Severe and Complex Neurological Disability: Management of the Physical Condition

This book is dedicated to all those people who struggle with severe and complex disabilities and to the people who care...

Author: Pauline M. Pope FCSP BA MSc SRP

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This book is dedicated to all those people who struggle with severe and complex disabilities and to the people who care for them.

For Elsevier: Publisher: Heidi Harrison Associate Editor: Siobhan Campbell Production Manager: Joannah Duncan Illustration Manager: Gillian Murray Design: Andy Chapman Illustrator: Ian Ramsden

BUTTERWORTH-HEINEMANN An imprint of Elsevier Limited © 2007, Elsevier Ltd

No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the Publishers. Permissions may be sought directly from Elsevier’s Health Sciences Rights Department, 1600 John F. Kennedy Boulevard, Suite 1800, Philadelphia, PA 19103-2899, USA: phone: (+1) 215 239 3804; fax: (+1) 215 239 3805; or e-mail: [email protected]. You may also complete your request on-line via the Elsevier homepage (http://www.elsevier.com), by selecting ‘Support and contact’ and then ‘Copyright and Permission’. ISBN 0 7506 8825 4 ISBN-13 978 0 750 68825 3 British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. Library of Congress Cataloging in Publication Data A catalog record for this book is available from the Library of Congress. Note Neither the Publisher nor the Authors assume any responsibility for any loss or injury and/or damage to persons or property arising out of or related to any use of the material contained in this book. It is the responsibility of the treating practitioner, relying on independent expertise and knowledge of the patient, to determine the best treatment and method of application for the patient.

Printed in China

vii

Contributors

Christine Bowes MCSP SRP Neuro-physiotherapist Course co-coordinator, ‘The Horse in Rehabilitation’ Association of Chartered Physiotherapists in Therapeutic Riding Volunteer physiotherapist: Diamond Riding Centre for Disabled Riders, Carshalton; Epsom Riding for the Disabled Association, UK Formerly: Senior Physiotherapist, Royal Hospital and Home Putney (now Royal Hospital for NeuroDisability) London, UK Barbara Cook MCSP Cert Ed SRP Senior Neuro-physiotherapist Richmond Community Neuro-rehabilitation Service, Teddington Memorial Hospital, Middlesex, UK Vocational Assessor (A1) Formerly: Superintendent Physiotherapist, Royal Hospital for Neuro-Disability, London, UK

Wendy Murphy MSc MCSP Cert Ed. SRP Therapy Education Coordinator Oxford Centre for Enablement, (previously Mary Marlborough Centre) Nuffield Orthopaedic Hospital, Oxford, UK Clinical Specialist Physiotherapist in private practice Formerly: Senior Physiotherapist, Ormerod School for children with special needs, Headington, Oxford, UK

ix

Foreword

Formative moments which lead to a major change of direction happen on perhaps a handful of occasions in a life-time career. For me, one of those formative moments occurred when, as a senior registrar in rheumatology, I attended a course at what was then called ‘The Royal Hospital and Home for Incurables’ (now Royal Hospital for Neuro-disability). The course was run by Pauline Pope and was entitled ‘Special seating for postural instability’. Ranging well beyond the area suggested by its title, the course effectively offered a holistic approach to management of severecomplex neurological disability. Over that 2-day period, Pauline and her colleagues brought structure and clarity to an area which until then had seemed utterly incomprehensible to me, and it led me down the career path I have followed ever since. It, therefore, gives me particular pleasure to be asked to write the foreword to this remarkable book, which is a critically important contribution to rehabilitation literature. Severe Complex Neurological Disability provides a comprehensive exploration of the problems of profound neurological disturbance and its musculoskeletal consequences. Starting from the basic principles of gravitational and biomechanical forces

and their effect on body structures, the book builds an approach to postural management as the key to unmasking functional ability. It offers a unique combination of reasoned argument and practical advice based on extensive clinical experience. From passive support in lying or sitting, to active postural challenge in water or on horseback, a theme which runs clearly through the book is the need for careful attention to detail and a personalised approach which capitalises on an individual’s strengths and abilities. Recognition that postural abnormality may be an individual’s only means of expression or function will often require an innovative approach, to guard against long term deterioration, whilst at the same time permitting that critical level of function. Pauline Pope has been a true champion and advocate for patients who would previously have been considered ‘beyond help’. Her book bears witness to the achievement of impossibility in this context. It is essential reading for all professionals involved in the care of people with long-term neurological conditions. Lynne Turner-Stokes 2007

xi

Preface

This book is about ‘management’. The word has a number of different meanings but in the context of this book, the verb ‘to manage’, signifying ‘to bring or keep under control’ is apt, (The Cassell Concise English Dictionary). It is this philosophy that underpins the book, which is about the management, or bringing under control, of the physical condition in people with severe, complex and sometimes deteriorating conditions. The plight of people in these circumstances is well known, indicating that unless those with the more severe conditions are managed appropriately, complications secondary to the inability to move are inevitable. These complications worsen the original condition itself and reduce quality of life still further. Treatment, with the aim of recovery, is not appropriate in most cases. Instead, the aim should be to optimize the overall physical status of the disabled person by facilitating remaining ability and minimizing the complications associated with impairment. In order to achieve these aims the whole lifestyle of the individual, including the needs of the care provider(s) must be taken into account. In this way the physical condition of the disabled person will be successfully ‘managed’ and those caring for him will receive the assistance they need. The population whose physical wellbeing is at stake, are the people who have complex disabilities arising from severe and profound impairment. These impairments are usually of neurological origin. They arise from trauma or disease such as anoxic or traumatic brain damage, birth injury,

spinal lesions and malformations such as spina bifida; Parkinson’s disease, multiple sclerosis and motor neurone disease. They also arise as a result of other conditions such as metabolic or genetic malfunction such as Lissencephaly, Rett syndrome, Huntington’s disease and the muscular atrophies and dystrophies. The prevalence of these conditions in the population is difficult to determine, but the incidence of people with severe and sometimes profound disability is believed to be increasing as a result of the increased longevity in the population in general and the increased survival of those who would, at an earlier date, have died. Although the severely disabled group of people constitutes a small proportion of the whole population, it consumes a relatively large proportion of any Health Service budget. It is therefore essential that these resources be used appropriately and effectively. The particular professionals for whom this book is written are the therapists (physical, occupational, speech and language), nurses and doctors working in this relatively new specialist field. The purpose is to assist them in effective management of the physical condition of the disabled person. It is anticipated that the topics covered will be of interest to many others in areas peripheral to the direct ‘management’ of the disabled person, for example, rehabilitation engineers, equipment manufacturers and providers, and even resource managers. In addition, it is hoped that the book will assist not

xii

PREFACE

only paid care workers but also those numerous and generally undervalued people who care voluntarily for a disabled person, giving them some insight and help with what is often an extremely difficult and seemingly interminable job. The book is essentially practical. Procedures are described in some detail in order to facilitate application not only by the healthcare profes-

sionals (HCPs) but also by the care provider(s) at the ‘coal face’. Throughout this book both female and male genders are referred to as ‘he’ in order to avoid the clumsiness of ‘he/she’. The term ‘care provider’ refers to both paid and unpaid people who look after the needs of the disabled person, unless otherwise specified.

xiii

Acknowledgements

In preparing this book I am indebted to so many people for their help, encouragement and valuable advice that it would increase the number of pages were I to name them! They will know who they are. There are those colleagues who freely gave of their time, knowledge and experience in reviewing the various chapters and provided me with constructive feedback. Special mention is made of Janet Wells, whose clarity of thought was enormously helpful in the actual writing of the book. If there are gaps or errors in content or lack of clarity with respect to description, the fault is mine alone. I am deeply indebted to the contributors, who have sacrificed so much of their time in the preparation of their chapters. The additional material provided by them has added a depth and range that greatly enhances the value of this book.

I greatly appreciate the agreement of Lynne Turner-Stokes, as an eminent physician in the field of neurological disability, to write the foreword to this book. I acknowledge the help given to me by Elsevier, in particular that given to me by Heidi Harrison, Siobhan Cambell, Joannah Duncan and Ruth Noble whose patience must have been stretched to the limit at times. Perhaps, most of all, I owe a great debt of gratitude to the people with severe and complex disabilities, and in many cases to their care providers, who have taught me so much and who it has been my privilege to meet. Finally and not least, without the on-going encouragement and tolerance of my family and good friends this book may not have come to fruition.

xiv

Introduction

There are a number of excellent textbooks that address the treatment (as opposed to management), and rehabilitation of the disabled person with neurological impairment. Some are specific to a particular population, for example ‘Management of Motor Disorders in Children with Epilepsy’, (Scrutton et al 2004). Some approach rehabilitation largely by pathology such as ‘Physical Management in Neurological Rehabilitation’ (Stokes & Ashburn 2004), while others, for example those to do with rehabilitation medicine (Barnes & Ward 2000, Carr & Shepherd 2003, Edwards 2002), take a more general or symptomatic approach to neurological rehabilitation. Sue Edwards in ‘Neurological Physiotherapy’ (2002) has introduced the topic of the long-term management of some conditions. In spite of the literature available there remains a lack of knowledge and information relating to the problems facing the disabled person, his care provider and the healthcare professional (HCP) who are confronted with severe and sometimes profound complex disability. To date there are few publications that address this topic in any detail. The existing lack of knowledge and skill in the field of severe and complex disability is hardly surprising since, until the late twentieth century, little attention was paid to the relatively few survivors of the more severe pathologies. People with static and deteriorating pathologies were termed ‘incurables’, most were housed in institutions and almost all became bedfast and died eventually, from suppurating ‘pressure sores’ or

pneumonia. It was not until the middle of the last century that reports revealed the miserable condition in which the few survivors existed, for example, Asher (1947) and Thomson et al (1951). These conditions persisted in many places to the end of the twentieth century and have been compounded on occasion by the perception that treating people with such pathologies was ‘a waste of time’. Even today, people with severe conditions, including children, continue to be treated rather than managed, with the result that their physical condition (as opposed to the pathology) deteriorates in spite of much therapeutic intervention. Condie (1991), carried out a survey of physiotherapy input to people with severe disability such as stroke and multiple sclerosis (MS), more than a decade ago. She concluded that therapists focused attention on treating the impairment – while allowing the physical condition of the person to deteriorate. Enlightenment has not been the only cause of the development of a new specialist field. Recent years have seen an exponential advance in medical knowledge and technology that has resulted in an increase in those surviving severe disease, trauma and ever more premature birth (Colantonio et al 2004, National Population Projections 2002, National Statistics 2004) as well as increasing longevity in survivors (Rapp & Torres 2000). In addition the population generally is living longer, with an increased likelihood of disability (National Population Projections 2002). For people with deteriorating conditions such as MS, increased survival and longevity, reported for example by

Introduction

Barnett et al (2003), Edan & Coustans (1999), Finlayson et al (2004) and McDonnell & Hawkins (1998) has not, unfortunately, been accompanied by an arrest in the progression of the disease. As a result the disability increases with the longevity, creating mounting dependency and higher risk of secondary complications. Even those with ‘static pathologies’ such as brain injury and cerebral palsy are not exempt from deterioration over time, e.g. Ando & Ueda (2000) and Bax et al (1988). The effects of advancing years on polio victims and people with spinal cord injury are increasingly recognized (Charliefue 2005, Nollet & de Visser 2003). There are indications that even relatively localized disability such as that following obstetric brachial plexus lesions gives rise to increasing disability in later life (Partridge & Edwards 2005). It is the improvement of the physical wellbeing arising from these varied conditions that currently challenges the HCP and those caring for the patient. To meet the challenge a new specialist field is developing. Traditionally, medicine in general and therapy in particular has concentrated almost exclusively on improving the motor and functional ability of the disabled person. While this is desirable and appropriate in those cases with potential to improve, it is less appropriate in those with static or deteriorating conditions. For such people this approach usually leads to frustration, dissatisfaction and an eventual lack of trust all round. Indeed, a therapist may feel he has ‘failed’ when unable to see ‘recovery’. A different management approach, which addresses the specific needs of adults with significant disability, was first advocated in the 1980s by Pope (1985, 1988). Since that time it has developed, covering children as well as adults, culminating in specific postgraduate training of HCPs, which is furthering and encouraging essential research in the field. This management approach has two aims. The first is to maximize remaining functional ability, using assistive technology devices as and when indicated. The second is to minimize the secondary complications associated with the original impairment, which are virtually inevitable unless positive action is undertaken to prevent them. The emphasis of the approach is on advising, training and supporting the disabled person and/or care provider(s). Procedures are used, to

minimize the deleterious effects of an inability to move or change position, which are incorporated into the lifestyle of the individual as much as possible. Therapeutic leisure activities such as swimming and riding are seen as important adjuncts to any management regime. Indeed these activities may play the major therapeutic role, especially where circumstances preclude other more conventional procedures. Management of complex disabilities does not exclude treatment. Treatment and management are complementary approaches. It is, however, possible to have management without treatment but not treatment without management. Management should form the basis of any rehabilitation regime that involves severe disability. It should be ongoing while the disability lasts, if necessary for the rest of the disabled person’s life. Further, the impact on available resources, of managing this particular and apparently increasing population, should not be forgotten. In addition to the needs of the disabled person, the approach takes into account the needs of the care provider(s) without whose cooperation management of the disabled person’s condition is difficult, if not impossible, to achieve. Compromise is an inevitable fact of life, particularly so in the field of severe and complex disability. However, it is only when those caring for the disabled person, both HCPs and care providers, have sufficient knowledge and skill to appreciate an ‘ideal’ solution, that the best compromise can be made. In the context of compromise, one of the most important tenets for the HCP to recognize is that the priorities of the disabled person, or care provider, do not always correspond and frequently conflict, with those of the professional. It is equally important that the HCP is not made to feel a failure when the disabled person’s condition continues to deteriorate due to circumstances beyond the HCP’s ability to control them. Successful management of the disabled person is dependent upon the HCP feeling confident and empowered through the acquisition of sufficient knowledge and skill to be able to answer the following questions: • Is there a problem? • If so, what is it?

xv

xvi

INTRODUCTION

• What can be done to correct it? • How will I know if I have been successful? The first question demands knowledge of what is ‘right’, that is, the range of ‘normal’ values. The second question can be answered only through comprehensive assessment of the disabled person (see Ch. 5). The third question depends upon the knowledge and experience of the professional concerned. The fourth question has, currently, a high profile. Outcome is the focus of much debate and discussion especially in this most challenging field. Outcome measures are vital in the management of the disabled person with severe disability and go hand in hand with assessment. It is intended that, having studied the contents of this book, the reader will feel better enabled to answer these questions when confronted with the severe and perhaps profoundly disabled person. A ‘well-managed’ disabled person will, hopefully, be

the result. When this is not achieved, there will at least be a better understanding of the reasons why it was not achieved. An holistic approach to the physical management of the disabled person is emphasized. Just as for the non-disabled individual, the physical and psychological states are related and interdependent. Finally, the reader is reminded that there is a dearth of robust evidence to support interventions in the field of severe and complex disability, although this situation is finally being addressed. We know what happens to people with severe and profound disability who do not receive appropriate management but we have yet to demonstrate conclusively, the effectiveness for those who do receive it. The contributors to this book hope that readers interested in this challenging but immensely satisfying specialist field of severe and complex disability will feel inspired to carry out the research so urgently needed.

REFERENCES Ando N, Ueda S 2000 Functional deterioration in adults with cerebral palsy. Clinical rehabilitation 14: 300–306 Asher R 1947 The dangers of going to bed. British Medical Journal 12(13): 967–968 Barnes MP, Ward AB (eds) 2000 Textbook of Rehabilitation Medicine. Oxford University Press, Oxford Barnet MH, Williams DB, Day S 2003 Progressive increase in incidence and prevalence of multiple sclerosis in Newcastle Australia: a 35 year study. Journal of Neuro Sciences 213 (1–2): 1–6 Bax M, Smyth D, Thomas A 1988 Health care of physically handicapped young adults. British Medical Journal 296: 153–1155 Carr J, Shepherd R 2003 Neurological rehabilitation: optimising motor performance, 7th edn. Butterworth Heinemann, Edinburgh Charliefue S 2005 Life after SCI – Age at injury vs. ageing issues. Presentation, International Conference on posture and wheeled mobility, Exeter, April 12–15 Colantonio A, Ratcliff G, Chase S et al 2004 Aging with traumatic brain injury: long term health conditions. International Journal of Rehabilitation Research 27(3): 209–214 Condie E, 1991 A therapeutic approach to physical disability. Physiotherapy 77(2): 72–77 Edan G, Coustans M 1999 Evolution and surveillance of multiple sclerosis. La Revue du Practicien 49(17): 1866–1871 Edwards S, (ed) 2002 Neurological physiotherapy, 2nd edn. Churchill Livingstone, Edinburgh

Finlayson M, Van Denend T, Hudson E 2004 Aging with multiple sclerosis. Journal of Neuroscience Nursing 36(5): 245–251, 259 McDonnell GV, Hawkins SA 1998 An epidemiological study of multiple sclerosis in Ireland. Neurology 50(2): 423–428 National Population Projections 2002, Central Statistical Office National Statistics 2004 Number 140 UK Nollett F, de Visser M 2003 Post polio syndrome. Archives of Neurology 61(7): 1142–1144 Partridge C, Edwards S 2005 Obstetric brachial plexus palsy. Physiotherapy Research International 9(4): 157–163 Pope PM 1985 Physical management in long-term disability. Published by the Royal Hospital and Home for Incurables, London. Booklet 1/85 Pope PM 1988 A model for evaluation of input in relation to severely brain damaged patients. Physiotherapy 74(12): 647–650 Rapp CE, Torres MM 2000 The adult with cerebral palsy. Archives of Family Medicine 9(5): 466–472 Scrutton D, Damiano D, Mayston M (eds) 2004 Management of motor disorders in children with cerebral palsy, 2nd edn. MacKeith Press, Cambridge Stokes M, Ashburn A (eds) 2004 Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, London Thomson AP, Lowe CR, McKeown T 1951 The care of the aged and chronic sick. E & S Livingston, London

1

Chapter

1

Biomechanics and body structure

RELEVANT AND APPLIED BASIC BIOMECHANICS

CHAPTER CONTENTS Relevant and applied basic biomechanics 1 Newton’s laws of motion

2

Forces and their effects

2

Properties of matter

6

Strength and behaviour of materials Body structure

11

The segments

11

The linkages

13

Stabilizing mechanisms Summary References

18 18

16

8

(In this chapter the term ‘body’ refers to any object, including the human body, unless otherwise specified). Mechanics is a branch of applied mathematics that deals with forces acting on an object. Biomechanics refers to the mechanics of movement in living things. An analytical approach to posture, movement and function therefore demands an understanding of basic mechanical principles. Primarily, the interdependency of the environment (gravitational forces) with the functioning of all body systems in the non-disabled person is acknowledged. The ability to organize posture and to move about develops within environmental constraints. The young child learns to manipulate and counter the force of gravity, ultimately achieving a high level of functional efficiency. What then is the situation facing the disabled person where posture control and movement are impaired, when stresses produced in the tissues cannot be relieved by a change of position? These unrelieved stresses on body tissues are a major factor in the development of the secondary complications associated with posture/ movement impairment. It is important therefore that we understand a little more about forces and their effects. Biomechanics, human body movement and structure are subjects well covered in numerous

2

BIOMECHANICS AND BODY STRUCTURE

textbooks, e.g. Low & Reed (1996), Trew & Everett (2005). It is not the intention here to cover the topics in any detail but only to highlight important principles and concepts as they relate to posture and motor impairment. Without some understanding of these principles and concepts it is not possible to undertake the management of the physical condition of the more severely disabled person. The reader wishing to explore the subject of biomechanics and of body structure in more detail is referred to the two textbooks already noted.

Newton’s laws of motion Newton’s three laws are fundamental to any understanding of mechanics. Law of inertia. Stationary bodies will remain at rest and bodies in motion will continue in motion at constant speed and direction, unless acted on by an external force. When a car starts moving the passenger tends to remain stationary, when the car stops the passenger tends to continue to move forwards. Law of acceleration. A body acted upon by a constant force will move with constant acceleration in the direction of the force. The amount of acceleration is directly proportional to the acting force and inversely proportional to the mass of the body. Put simply, if the force applied to a body remains the same, the acceleration and direction also remains the same. If the force is doubled, the acceleration is doubled, but if the weight of the body were doubled the acceleration would be halved.

Unloaded

a)

b)

Law of action and reaction. Every action has an equal and opposite reaction. Therefore, it is not possible to exert a force on a body without producing a force in the opposite direction on some other body or bodies. While this is true in all situations it is most evident in, for example, the recoil of a gun when it is fired or the recoil of the trampoline when jumped upon.

Forces and their effects A force is a push or pull that alters or tends to alter the state of motion of a body. A force can be described in terms of magnitude, direction, line of action, and point of application. There are a number of different types of force that are familiar in everyday life.

Tension Tension is a force pulling in opposite directions, at either end of an object tending to pull it apart (Fig. 1.1(a)). A tensile force is used, e.g., in the passive stretch of tissues when applied to prevent shortening (contracture).

Compression Compression is a force pushing the boundaries of a body together (Fig. 1.1(b)). Compression of bone and cartilage occurs when these tissues are weight bearing and during static muscle contraction, especially when muscles work synchronously to stabilize joints. Compression of all body tissues equally is experienced in deep-sea diving.

c)

d)

e)

Figure 1.1 Examples of linear forces: (a) tension, (b) compression, (c) shear, and rotational forces: (d) bending, (e) torsion. (Adapted from Trew & Everett, 2005.)

Relevant and Applied Basic Biomechanics

Intermittent compression is essential for the development of the strength of bone. It contributes to the shaping of bone, for example, the development of the pelvic acetabulum is dependent not only upon the compressive force of weight bearing but also on the direction in which that force is applied (McCarthy & MacEwen 2003). However while intermittent loading (compression) of bone stimulates growth, excessive and prolonged compression is known to retard growth. This is of significance in the development of deformity in people who are unable to change position. It is particularly relevant to the development of scoliosis, especially during the rapid growth period at adolescence when relatively mild curvatures dramatically increase in magnitude. There are many publications on the relationship between loading and bone growth, e.g. Daly et al (1999), Lupparelli et al (2002), Marchigiano 1997, Shefelbine et al (2002), Sumner & Andriacchi (1996). Goswami et al (1987) found significant differences in lower limb anthropometric measures between ambulant and non-ambulant men.

Shear Shear forces tend to move sections of a body acting in the same plane in opposing directions but not in the same line of action (Fig. 1.1(c)). Shear forces are instrumental in the development of decubiti or pressure ulcers, where the posture of the body creates a tendency to slide, as in bed propped up on pillows. Friction prevents sliding but the underlying tissue layers move relative to each other in the same plane, with resultant intrinsic damage especially to the blood vessels (Ch. 3, section on pressure ulcers).

Friction Friction is the resistance to movement of one surface across another; the rougher the surface, the greater the friction and hence the higher resistance to movement. Friction is also the resistance to rolling an object such as a wheel across a surface or the drag effect of moving in air or water. Friction plays an important role in both facilitating and impeding functional activities, e.g., a certain level of friction is required to enable us to walk without slipping and sliding; while the

increased friction significantly increases the difficulty encountered when propelling a wheelchair across a carpet as opposed to a wooden floor. Similarly, walking in water is difficult as the frictional resistance is greater than when walking in air. Frictional resistance can cause damage; skin abrasion may result from sliding the disabled person across a surface. Reducing friction is the principle underpinning use of slide sheets for moving and handling the disabled person. The smooth surface reduces the friction and so facilitates the move. The reverse principle, that of increasing friction by using a rough surface in an attempt to stop the person sliding down the bed or wheelchair is ill advised, as it creates high shear forces within the tissue layers, predisposing to internal tissue damage. Instead, the cause of the sliding should be addressed.

Bending Bending, as shown in Figure 1.1(d), is a combination of tension on the convex side and compression on the concave side.

Torsion Torsion occurs when forces act on a body to rotate sections in opposing directions (Fig. 1.1(e)). Torsion is in fact a combination of tensile, compressive and shear forces. Twisting a dishcloth, for example, subjects the material to this combination of forces, maximizing the extrusion of liquid. In the healthy body, the tissues are adapted to tolerate the particular forces that are dominant in a given tissue’s functional role, e.g., tendon is tolerant of tension, bone tolerates compression and cartilage resists compression (Houlbrooke et al 1990). In general, the tissues are least tolerant of torsion as seen in bone fractures (Turner et al 2001) and damage to the intervertebral disc (Koreska 1977). It is therefore important that the circumstances for ‘managing’ the disabled person are organized so as to minimize deleterious forces, bearing in mind that prolonged application of any force to a localized area is deleterious.

3

4


F2

F1 d

d

Pivot

Figure 1.2 Balance of moments: the lighter child placed further from the fulcrum to balance the heavier child placed nearer to the fulcrum. Moment = F x d (Force x distance)

Moments A moment (or torque) is a force acting on a body at a distance from a pivot point or fulcrum, tending to bend it or cause it to rotate. The magnitude of force required to generate a given bending, rotating or turning moment is inversely proportional to the distance from the fulcrum or pivot point. A commonplace application of this principle is seen when two children of different weights use a seesaw, the heavier one being placed nearer to the pivot in order to balance the moments (Fig. 1.2). An example of a turning moment is seen in the position of a door handle situated at the greatest distance from the hinge in order to reduce the effort in opening and closing the door. The same principle is used when applying support in sitting to prevent a rotation of the pelvis. For best effect, the support should be applied at the greatest possible distance from the pivot (hip joint), i.e. at the top of the sacrum to control backward rotation and at the level of the anterior superior iliac spine to control forward rotation. Knee blocks applied to a person in sitting when the femur is deviated, i.e. adducted or abducted relative to midline, will create a turning moment about the hip joint, compounding any existing deviation (‘windsweeping’) or even inducing such deviation (Fig. 1.3). Efficient movement of a segment of the body such as flexion of the forearm is achieved by the application of a force (biceps muscle contraction), acting at a distance from a pivot point (the elbow joint). Joint stability, on the other hand, in which movement is prevented, is secured when muscles

Figure 1.3 Turning moments: blocking the knee when the thighs are deviated relative to the pelvis applies a rotational force in the same direction as the deviation, compounding the malalignment.

act together, as close to the joint as possible and with equal force on all sides. This can be seen in the muscles that give the greatest support to the spine where they are short and close to the vertebrae. A bending moment occurs when two forces of similar magnitude are applied at opposite ends of an object and in opposing directions (clockwise and anti-clockwise) at a distance from a fixed point. A bending moment is commonly seen when a plank of wood, supported at either end, tends to bend with the force of gravity and more quickly if weight is placed upon it (Fig. 1.4). In bending, the concave side is compressed and the convex side is under tension. In general, this strengthens the concavity of the structure and weakens the convexity. The bending effect may also be seen in the person who has difficulty in maintaining an erect posture in sitting. When the head falls forwards, the weight of the head, the arms and shoulders create a bending moment in the spine causing stress within the spinal tissues, with maximum stress occurring usually in the mid-thoracic region (Pope 1985). In sitting, the stress is increased when


in principle, be applied in the opposite direction, in this case backwards. Although rather more complex, this principle is applied when stabilizing posture and is dealt with in Chapter 6.

F3

d

d

Equilibrium F1

Equilibrium is the state in which all forces acting on a body are equal, causing it to remain static. The force of an object placed on a table is opposed by an equal and opposite force, the ground reaction force. Moments are in equilibrium when opposing moments acting on a body are equal, as when children balance on a seesaw or when muscles contract synchronously to maintain the erect posture. Stability of an object relates to the ease with which it can be unbalanced, i.e. the amount of energy needed to induce the line of gravity to fall outside the base area. The characteristics of a stable body are:

F2

Figure 1.4 Bending moments: forces acting in opposing directions at a distance from each other will tend to cause bending.

the pelvis is tilted backwards, increasing the bending moment caused by the reactive force of the seat, in the opposite direction (Fig. 1.5). Understanding the direction of bending and rotation of body segments relative to each other and to the supporting surface is fundamental to analysis of posture in the disabled person. Only from correct analysis can the most effective support be identified and applied. For example, if the disabled person is sitting with a flexed spine, that is, bending in a forward direction, support should,

a)

Figure 1.5

• A wide base of support. • Low centre of gravity. • Large mass.

b)

Bending moments acting on the spine: upper and lower parts of the body bending in opposite directions.

5

6


a

Figure 1.6 (a) A stable configuration. (b) Unstable configuration. (Reproduced from Edwards 2002)

In Figure 1.6(a) the stable condition is seen in structure and shape of the body configuration while the unstable condition, Figure 1.6(b), is seen in the configuration of the person sitting on a stool.

Properties of matter Mass b

Although mass and weight are frequently used interchangeably, they are not the same. Mass defines the amount of matter/substance in a body, i.e., the number of molecules in the body. Mass remains the same irrespective of where an object/body is in space. There is considerable variation in mass between individuals and across populations. At times the variation in distribution of mass becomes significant, e.g., the newborn baby is ‘topheavy’ with the centre of mass (CM) around the 10th–11th thoracic vertebrae descending to the adult level, around the 5th lumbar vertebra, in adolescence (Maekawa et al 1987). Muscle tissue accounts for approximately 40% of body mass in the nondisabled adult, thus the non-ambulant person is likely to have a higher CM when compared with an ambulant person. Consequently, balance will be

more difficult, as a greater proportion of body mass is found in the upper part of the body. Amputation of a limb will change the distribution of mass and will affect balance, posture and movement. The effect of amputation on posture and balance of a lower limb is obvious, however, it is less obvious but equally significant with the loss of an arm.

Weight Weight is the force exerted on an object as a result of being in a gravitational field, i.e., mass multiplied by the force of gravity. In a constant gravitational field the force varies in proportion to the mass. It is the


weight of the body that is of concern here rather than the mass of an object.

Gravity

Centre of mass and centre of gravity These terms also tend to be used interchangeably. This is not strictly true as the centre of mass (CM) is the point within an object/body that has an equal distribution of mass all around. The centre of gravity (CG) is that point where the pull of gravity is equal all around and need not be within the body itself, e.g., the CG of a ring is in the central space. However, within the context of this book the term CG will be used unless otherwise stated. The CG of a static object remains the same wherever it is placed on the earth, but in an object that changes shape, e.g. the body, the CG varies according to the arrangement of body segments. For example, if the arms are raised above the head, the CG will move upwards. Similarly, in amputation of a lower limb the CG will shift upwards and to the contralateral side. In the non-disabled adult standing in the anatomical position the CG is usually anterior to and around the level of the second sacral vertebra. Control of the CG correlates with freedom of movement of the peripheral body segments. The ballet dancer and gymnast demonstrate ultimate control of the CG with resultant extensive flexibility and wide range of movements. Conversely, functional use of the peripheral body segments is constrained when an individual is using his whole body to maintain equilibrium. This principle is readily appreciated when we walk on a slippery surface. All parts of the body, including the limbs, are used to prevent falling. So too, when balance is precarious, the elderly and/or disabled person struggles to prevent falling by using the whole of his body to maintain balance.

Line of gravity and centre of pressure The line of gravity (LG) is defined as the projection of a line through the CG to the ground (Fig. 1.7). The centre of pressure (CP) is the point of application of the ground reaction force, that is, the equal force opposing the pull of gravity on the body (the weight of the body). In quiet standing with equal weight distributed to both feet the CP is located between the feet (Fig. 1.7).

Centre of gravity

Line of gravity

Centre of pressure Ground reaction force

Figure 1.7 The line of gravity: in a person standing erect the projected line passes through the centre of gravity to the floor. The centre of pressure lies well within the base of support.

Inertia Inertia is a fundamental property of matter and exemplifies Newton’s first law, that is, the tendency of a body to stay at rest if it is at rest or if moving, to continue to move in the same direction and at the same speed. In effect, inertia resists changes in speed and direction and is related to the mass and the acceleration of a body. The increase in inertia is a consideration when applying additional weight to a limb, for example in splinting, where the effect of a splint on movement of a weak limb would increase the difficulty not only in initiating but also in stopping movement. The effects of inertia are of considerable importance in ensuring safe transport in a motor vehicle, particularly of a disabled person.

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Momentum Momentum is related to the mass of a body and to its velocity (velocity being the speed and direction of displacement). Momentum is used to overcome inertia and is particularly important in reducing the energy cost in walking and generally moving about. For example, the disabled person will find it easier to continue to keep the wheelchair moving than it is to overcome the inertia of constantly stopping and starting it rolling, which is why shopping is tiring for both the disabled and non-disabled person alike.

Strength and behaviour of materials This section gives an overview of the manner in which materials (tissues) behave when forces are applied to them. Some examples follow of the relevance of this behaviour to the human body system in general and to physical management of the disabled person in particular.

Elasticity Elasticity is the ability of a solid material to return to its original form after deformation, as when a rubber band is stretched and released. Elastic fibres are present in most tissues to a greater or lesser degree, allowing a certain amount of stretch without causing deformation. Elasticity is greater in the tissues around the more mobile joints, for example the hip joint, and less in tissues surrounding less mobile joints such as the sacroilliac joint.

Viscosity Viscosity is the property of a fluid that enables it to resist flowing when shear stresses are applied to it, for example treacle flows more slowly than water, demonstrating a higher viscosity. The blood has a specific viscosity that is essential in allowing an easy flow through the blood vessels. In cases of increased viscosity heparin is used to ‘thin the blood’ and ease the flow.

Viscoelasticity Viscoelasticity signifies a material that exhibits a mixture of elastic and viscous properties. As a result of these combined properties distortion is not only

dependent upon the force applied but also on the rate at which it is applied. Viscoelasticity allows the material to stretch if a force is applied slowly but it will resist force applied quickly. Such behaviour is experienced when attempting to pull shut a door with a ‘damper’, it will resist a rapid pull but will gradually move with a slow pull. The behaviour of virtually all body tissues is to a greater or lesser extent viscoelastic. The proportion of elastic to viscous properties depends upon the function of the tissue. Ligaments are more elastic than viscous where stretch as well as strength is required, while cartilage is more viscous than elastic where resistance to compression and load dispersion are the priority. Recognition of this behaviour is extremely important when performing passive stretches to maintain tissue length in people who are immobile. The force must be applied sufficiently slowly to allow time for tissues to stretch which, at the microscopic level, means loosening the tight force that binds the molecules together. If applied too quickly the force is resisted and may cause damage, much as chewing gum can be stretched if pulled slowly, but will break if pulled rapidly.

Stress Stress is defined as the force, usually tensile or compressive, per unit cross-sectional area and is inversely proportional to that area. For example, a thin tendon when stretched with the same force as a thicker tendon will experience greater stress. Thus when performing passive movements to maintain range of motion in a disabled person, it is important that the person applying the stretch has some knowledge of the anatomy and behaviour of the tissues being stretched.

Strain Strain is the term used to describe distortion, or change in size and/or shape that occurs in a body as a result of the stress applied. It will stretch (Fig. 1.8(b)), compress (Fig. 1.8(c)) or distort (Fig. 1.8(d)), depending on the kind of force applied. The degree of distortion in an object produced by a given force depends upon its elasticity, i.e. the stiffness of the material of which the body is


Unloaded

a)

Unloaded Elastic limit

Area of necking

Stress

X Failure of material

L0 Tension

b)

Elastic region

L -L Strain = 1 0 L0 L1 Compression

c)

L -L Strain = 2 0 L0 L2 Shear d) d Strain = 0 =

h

d h

0

Figure 1.8 Strain occurs under stress: (b) tension will tend to elongate a body, (c) compression will tend to reduce the length, (d) shear will tend to cause distortion. (Adapted from Trew & Everett, 2005.)

made. Less stiff materials are more elastic than stiffer materials. A rubber band, and similarly skin, is very elastic and deforms readily whereas an iron bar or bone will require the application of considerable force over time to cause deformation (as opposed to fracture).

Stress/strain relationship

The concepts of stress and strain assist in understanding the behaviour of different materials. The relationship of stress to strain is illustrated in the stress/strain curve (Fig. 1.9). This curve demonstrates how a particular material responds to an applied force and the degree of deformation produced by that force. An understanding of how deformation occurs is essential to an appreciation of the effect of sustained forces applied to the tissues of an immobile person. All materials have their elastic limit, which varies with the material. It is the point at which the material, when the particular force producing the

Toe region

Plastic region

Region of flow

Strain

Figure 1.9 Typical stress/strain curve for a biological material showing the point at which deformation occurs, the elastic limit, and the yield point at which deformation continues without any increase in stress. (Adapted from Trew & Everett, 2005).

strain is removed, will not return to its original shape. It has become permanently deformed. Up to the yield point the material will exhibit some elasticity but beyond that point strain continues without increase in stress, i.e. plastic flow occurs until complete failure/fracture occurs. All the tissues of the body are subject to varying amounts of stress at different times, the magnitude depending upon the prevailing circumstances. Damage occurs when stress is applied too quickly or over extended periods of time. In the non-disabled person damage is avoided by sensors within the tissues that alert the individual to high stress levels and precipitate action to relieve that stress, usually by change of position. It is by managing/controlling both the magnitude of forces and the time for which they are applied to the tissues of the disabled person that stress can be kept within tolerable limits, that is, damage is avoided. In this way, the secondary complications associated with impairment of posture and movement may be minimized.

Plasticity In mechanical terms plasticity signifies the point at which the material has been stressed beyond the elastic limit, that is, it will not return to its original shape or length. The material has become distorted/deformed; in fact the structure has become damaged. Plasticity in physiological terms is rather more complex (Devor 1994). It may be defined as the ability of a tissue or organ to adapt to circumstance

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or the demands made upon it. The stimulus may be mechanical, e.g. bone or muscle lengthening if held stretched, or physiological, when a particular system is pushed to the limit of its ability to function adequately. In both cases if stress persists the system responds by adapting anatomically and physiologically to meet the additional demand. This process is seen in the adaptive changes that occur to meet the demands for exercise tolerance as in the marathon athlete or the increased haemoglobin response of the red blood cells to living in a rarefied, low oxygen, atmosphere. We might say that the body system does not like stress and will take action to relieve the stress. Other forms of plasticity are seen in situations where part of an organ, e.g. the brain, is damaged. Reorganization of neural circuits can occur with unmasking of previously unused pathways and formation of new synapses (Kolb 1995); the activity of the damaged area is sometimes taken over to a greater or lesser extent by neighbouring intact areas (Lawes 2004, Nudo & Friel 1999). The mechanisms by which changes occur are not yet fully understood. The fact that the brain attempts to respond to the demands made upon it is the principle upon which the training and retraining of brain-damaged people is based (Lebeer 1998). Numerous studies (e.g. Howe et al 1992, Kernell 1998), reviewed in historical perspective by Pette (2001), have shown that muscle is an extremely adaptable tissue. While the component elements of the muscle tissue are present in the neonate, the ultimate composition of muscle fibre type and the proportion of slow to fast fibres in a given muscle is dependent on the neural input and the way in which the muscle is used. Many nerve crossover studies in animals since the original work of Buller et al (1960) have demonstrated that slow-contracting fibres can be induced to become fast-acting fibres and vice versa (e.g. Pette 2001, Vrbova et al 1985). On the other hand, change in muscle phenotype can be driven by the way in which it is made to perform (Pette 2001), e.g. aerobic endurance training leads to an increase in type I (fatigue resistant) muscle fibres at the expense of type II fibres in skeletal muscle composition (Thayer et al 2000). Loading appears to be essential for the maintenance of type I fibres in antigravity muscles (Anderson et al 1999, Burnham

et al 1997). Walters et al (2000) found that on denervation, fast-acting muscle fibres become slow and slow-acting fibres become fast, change being more rapid in the former than the latter. In rehabilitation, the extraordinary adaptability of muscle tissue to a change in circumstance can be exploited in two ways, using electrical stimulation to alter the frequency of neural input or altering the way in which the muscle is made to perform, by exercise training with a specific purpose, e.g. to increase tolerance. Bone requires loading (stress) in order to grow; the direction of the loading is also important (Klein et al 2002). In addition, the action of the muscles stimulates bone growth (O’Dwyer et al 1989, Shields 2004). (For further detail of bone physiology and the relationship of muscle action to bone growth, together with its clinical implications, the reader is referred to a review by Frost (2001).) The final shape and strength of the bony skeleton is determined by the way it is used, that is, the direction in which the forces, both internal and external, have been applied during growth. Therefore corrective surgery to alter bony alignment needs very careful consideration. Following surgery, time to physiologically adjust (remodel) to the change in direction and magnitude of forces is required. Empirical evidence indicates that until this occurs some discomfort, even pain, may be experienced for quite some time postoperatively. Marchigiano (1997), referring to bone, states that it is never metabolically at rest; it is constantly being remodelled along the lines of mechanical stress. This constant remodelling applies equally to other tissues. The important point in rehabilitation is the need to allow time for the remodelling to occur. Plasticity is fundamental to healthy functioning of the body, allowing it to adjust to varying circumstances and to the demands made upon it. It is precisely this ability of the body system to adapt to these demands that underpins many of the techniques used in rehabilitation. However, not all plasticity is beneficial, such as the neural misconnections following nerve lesions (Lawes 2004). In a wider sense, the adaptation of tissues to immobility results in the development of contractures, overstretched or elongated tissue,

Body Structure

or bony malformations. These changes occur as a result of too much stress in some tissues, not enough in others, while asymmetry of stress produces deformity.

BODY STRUCTURE In order to understand the development of particular postures in people with severe postural impairment, knowledge of the underlying structure and the mechanisms that provide stability in the non-disabled person is essential. The basic elements of this knowledge follow. For further detail the reader is referred to Trew & Everett (2005). The body structure is inherently unstable. Without the usual stabilizing mechanisms the system will collapse, much as the links of a chain will when it is dropped. In addition, if one posture is sustained over long periods of time, the tissues gradually accommodate to the shape of the support, behaving in a similar way to a very viscous gel that gradually flows to take up the shape of the support (Fig. 1.10). Even bone will adapt in this way albeit at a very slow rate. The effect of gravity is readily apparent in the individual who takes on a ‘trouser pressed look’ or becomes the ‘filling in the Human Sandwich’ as described by Hare (1987) and is dramatically seen in cases where an immobile person has maintained the same posture for many months or years (Fig. 1.11). The author Richard Bach (1977) graphically refers to such an individual as being ‘smashed down and twisted … as if by some high gravity force’. The body structure is multi-segmental and highly flexible. It is just these features that allow a person to adopt the wide variety of postures necessary for maximum interaction with the environment but with the disadvantage that the structure is simultaneously very vulnerable to damage. Stability of the body structure is achieved through sophisticated design of the structure itself and the development of an integrated, coordinated and highly specialized system of neuromuscular control. It is enormously complex. A simple but useful means, for our purpose, of reducing a very complex system to manageable proportions is to consider the body structure as a

Figure 1.10 The effect of gravity on sitting posture. The person illustrated is accommodating to the shape of the wheelchair.

system of segments and linkages (Pope 2002, Pope et al 1988) while recognizing the limitations of this interpretation (Fig. 1.12).

The segments The segments considered are the head, thorax, pelvis, thighs, lower legs, feet and upper limbs (including the shoulder girdle). The upper limbs are considered here as one segment as the arms are generally non-weight bearing. These structures have variable stiffness, some being more vulnerable to deformation than others under sustained stress. The

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a)

Figure 1.12 Diagrammatic representation of body segments and linkages. (Adapted from Edwards, 2002).

person unable to hold his head up is such a challenge for the health care professional (HCP)!

The thorax Figure 1.11 The effect of gravity and the reaction of the supporting surface on a person who has been supine for a long time are well illustrated in this photograph.

head, pelvis and long bones are relatively rigid (stiff) when compared with the multisegmental thorax and foot.

The head The underlying skull is formed by fusion (in the adult) of the component bones into a rigid, almost completely enclosed box in which the brain is protected. It is relatively heavy, comprising approximately 10% of total body weight (Moore & Petty 2001) and is supported on the highly mobile cervical spine. In the erect posture the head is at the furthest distance from the base of support. It is no surprise that provision of effective support for the head of the

The thorax is formed of multiple components, the thoracic vertebrae, ribs and sternum creating a cagelike structure that protects the lungs and heart. The bones are connected by mainly cartilaginous, but some ligamentous, attachments. The cage is enclosed by muscles that play a major role in respiration. Of the segments, the thorax is particularly vulnerable to deformation under stress (Fig. 1.13) as is evident in scoliosis. The cage-like structure does, however, restrict movement within the thoracic region of the spine, thereby reducing, to some extent, the vulnerability of that region to deformation.

The pelvis The pelvis is comprised of the two illia and the sacrum, which together form a relatively rigid structure held tightly together by short broad ligaments. These short broad ligaments are very

Body Structure

when load is persistently applied at an angle to the long axis of the bone, as is evident in the serious deformities seen in long-standing conditions.

The feet The feet, being multi-segmental and highly flexible, are very vulnerable to deviation. The neutral position of the foot with tissues relaxed is reported to be in approximately 14 degrees of plantarflexion (Lestienne & Gurfinkel 1988). This being so, a force is required to achieve a plantigrade position, (90 degrees to the lower leg). In the erect standing position and in sitting, the ground reaction force achieves this position while the muscles control alignment of the foot relative to the lower leg. Where muscle control is imbalanced or lacking, this control of alignment of the foot presents the HCP with another challenge.

The upper limbs and shoulder girdle Figure 1.13 Deformation of the thoracic cage under prolonged stress.

strong and permit little movement, which increases the stiffness of the structure. The small movements permitted are necessary for mobility during weight bearing. The circular structure and rigidity of the pelvis make it well suited for the transmission of the load between the trunk and lower limbs (Moore & Petty 2001). Nevertheless, even the pelvis will deform if sufficient force is applied for long enough.

The long bones The long bones of the lower limbs in the ambulant person are developed for load bearing. The strength of the bone structure develops according to the stresses and strains applied to it during growth, not only through load bearing but also by the pull of the muscle attachments. The importance of the magnitude and direction of the applied forces, mentioned earlier in this chapter, is particularly relevant in the management of the disabled child as correct alignment is crucial for the normal formation of the bone structure (Cornell 1995). In the non-disabled person the long bones are strong in compression and vulnerable to torsion (Niebur et al 2001, Turner et al 2001). Although relatively rigid, the long bones will deform over time

The upper limbs and shoulder girdle, although nonweight bearing, impact on balance and stability, especially in the erect posture. In the anatomical position the arms are by the side and in the line of gravity. Any movement away from this position affects balance. In general and for most activities, the arms are forward of the trunk creating a pull in that direction. This pull must be countered by active extension of the spine. It is not surprising then, that where fatigue and/or weakness is prevalent, as in many neurological conditions such as multiple sclerosis (MS), the disabled person is seen to sit with head and shoulders flexed (Pope 1985, Pope et al 2000 (unpublished pilot study, Fig. 1.14)). In addition to their direct functional role, the upper limbs play an important part in improving the efficiency of general mobility. This alternative role is immediately obvious in the posture and movement of the person with a paralysed or partially paralysed arm, as in brachial plexus lesions, e.g. Erb’s palsy, when walking, running, etc. These body segments are linked together by joints of varying mobility.

The linkages The main linkages concerned with postural stability are the load–bearing linkages of spine and joints of the lower limb. However, the structure of the

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top to bottom in descending order, indicating the increasing load bearing of the lower sections.

The intervertebral discs

The intervertebral discs are as complex in structure as the vertebral bodies. They are designed not only to increase flexibility but also to control movement, to transmit and disperse load, and to contribute to the curvatures in the spine. The discs have high water content: 85% in the young adult diminishing to approximately 70% in later years (Moore & Petty 2001). The importance of the intervertebral discs in overall function of the spine should not be underestimated.

The vertebral arches

These arches continue the bony protection around the spinal cord, completing the spinal canal. The spinous and transverse processes increase the area for attachment of ligaments and for muscles, increasing the leverage of the latter.

Figure 1.14 Slumped posture typical of weakness or fatigue showing strain in the mid thoracic spinal region.

shoulder joint is also considered, as the arms contribute to postural attitude, are essential to functional activity and influence overall management of the person with a severe disability.

The spine The spine forms the linkage within the trunk and to the head. It is a very sophisticated compromise between stability and flexibility (Putz & MullerGerbl 1996). In addition, the spine acts as a shock absorber by virtue of its shape and structure and it is well designed to transmit load. The lumbar spine carries the greater load as indicated by the bigger and thicker vertebrae and intervertebral discs. The spine also acts as a point of fixation for numerous muscles and for movements of the head and limbs, as well as providing the protective cover for the spinal cord.

The vertebral bodies

Throughout the length of the spine the vertebral bodies are a complex arrangement of bony tissue designed to resist compression, torsion and the tension produced by muscular contraction and movement (Bogduk 1997). The vertebral bodies vary in shape and size reflecting their particular role. Size increases from

The apophyseal joints

The apophyseal joints form articular connections between the vertebral arches, the inferior facet of one vertebra articulating with the superior facet of the vertebra below. These joints are very important in permitting but also restricting movement and in distributing load.

Movements of the spine The movements possible within the spine are extremely complex, combining flexion, extension, rotation and gliding, all of which contribute to the multi-planar movement of the whole spine (Bogduk 1997, Putz and Muller-Gerbl 1996, Shirazi-Adl et al 1986). The exact degree and specific movement of the spine varies with the particular segment, being governed, in the main, by the shape of the vertebrae themselves and the thickness of the intervertebral discs. Although the degree of movement permitted in any one section is limited, the composite movement within the spine is extensive. The two most flexible sections are the cervical and the lumbar spine. The combination of lateral flexion with rotation in spinal movement is of particular significance where postural deficit exists. A lateral bend is accompanied by rotation between the vertebrae, especially pronounced in the lumbar region (Moore & Petty 2001). Ligamentous and intervertebral disc damage occurs if the eccentric loading produced by this combined bending and rotation is sustained (Koreska 1977). These conditions are frequently

Body Structure

encountered in the person who is unable to maintain an erect posture and predispose to the development of a scoliotic curve. In the cervical region the intervertebral discs account for a fifth of the overall length of the spine. They contribute greatly to the flexibility in that region. The greatest mobility is in the upper cervical vertebrae but it is very flexible throughout its length. The lumbar region is less flexible than the cervical region but it does nevertheless have significant flexibility. The lumbar spine is most stable in extension as, in that position, rotation is restricted. It is most vulnerable to damage when rotation is combined with flexion as stability is reduced. Thus lifting and manoeuvring objects with the lumbar spine flexed and rotated is particularly hazardous (Miller et al 1986). The thoracic region is the least flexible region of the spine. The cage-like structure of the ribs greatly restricts movement. Nevertheless, this region of the spine will bend and buckle under sustained stress resulting in bending and twisting within the ribcage. The twisting is manifest in rotation of the vertebrae with distortion of the thorax creating a convexity on one side and a concavity on the other side. Movements of the spine facilitate fluid exchange and supply of nutrients to the intervertebral discs while the static condition reduces the fluid component of the disc. Thus lack of mobility predisposes to inadequate nutrition with resultant disc degeneration (Adams & Hutton 1986, Ghosh 1990, Houlbrooke 1990) and reduced flexibility. Other studies have found that the sitting posture imposes the greatest stress on the lumbar discs (Nachemson 1976). These points are of particular relevance to the management of the sedentary disabled person or indeed to anyone who leads a predominantly sedentary lifestyle.

The shoulder and hip joints These joints form the linkage of the limbs to the trunk. Both are ball and socket joints and in consequence they are multi-planar and highly mobile. There is virtually no bony limitation to movement in either joint.

The shoulder joint

The socket of the shoulder joint is shallow, the head of the humerus being relatively easily displaced. The tissues surrounding

the joint are particularly vulnerable to damage when passively moving the arms of the person who may lack the normal protective muscle action, a point with implications when assistance is needed with care activities.

The hip joint

In the hip joint, the deeper socket of the acetabulum provides greater coverage to the head of the femur. However, the development of both acetabulum and head of the femur depends upon normal gait and weight bearing. Even in the previously ambulant person, in longstanding paralysis, it is not unknown for the hip to dislocate. The hip joint in the non-ambulant child is extremely vulnerable to dislocation as the normal weight–bearing forces are lacking or misdirected with the result that the joint remains underdeveloped and/or malformed. Subluxation and dislocation are then frequent complications (Cornell 1995), many requiring corrective surgery. Pain is a frequent later accompaniment to dislocation, often requiring surgical intervention (Root et al 1995). In non-ambulant children where deviation (windsweeping) of the lower limbs is also present, the hip joint of the adducted, internally rotated leg appears to be the most vulnerable to dislocation (Pope 1997, Porter 2004). Hence the importance of preventative action from a very early age (Pountney & Green 2004) with the objective of maintaining alignment of the lower limbs with the trunk.

Knee and ankle joints The knee and ankle joints are primarily hinge joints although significant rotation occurs in the knee at the end of extension in order to lock and stabilize the joint for weight bearing. In the flexed position the lower leg can easily be rotated passively relative to the thigh. This point should be borne in mind when fixing the feet of a disabled person to the foot support of a wheelchair without ensuring correct alignment with the knee. Twisting at the knee joint predisposes to damage of the ligaments and is highly likely to cause discomfort, if not pain (Fig. 1.15). A feature of a hinge joint is its inability to create torque about the joint and therefore to carry or transmit load. In the non-disabled person the

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the muscles is clearly demonstrated when attempting to lift an unconscious or paralysed person; they appear to be extremely elastic and difficult to hold together. The ligaments attach the bones together. The shorter ligaments surrounding the joints assist in stabilizing the joint, but they are of limited use as stabilizers without the additional support of muscular control. The effectiveness of ligaments as stabilizers is inversely proportional to the length of the ligament and the mobility of the joint. For example, the capsule of the shoulder joint is relatively loose, in order to permit the wide range of movement, but it readily subluxates when muscular control is lacking, as frequently seen in hemiplegia. Conversely, the thick broad ligaments of the sacroilliac joint are very effective stabilizers but permit little movement. Stabilizing mechanisms are considered in relation to the linkages (Fig. 1.16).

Figure 1.15 Rotation of the lower leg relative to the thigh, not passively correctable.

muscles across these joints contract to stabilize the joint and permit the transmission of load. This ability to transmit load is reduced or lost in weakened or paralysed lower limbs.

Stabilizing mechanisms Having considered, albeit briefly, the structure and the flexibility of the body system, it is time to consider the mechanisms that provide stability. These are necessarily, in light of the degree of inherent instability, complex, highly sophisticated and integrated mechanisms. An overview only follows here, for further detail refer to Trew & Everett (2005). Muscular contraction provides the main source of stability to the multi-joint body structure; without this there is little or no stiffness in the system. The degree to which stability is reliant on

Figure 1.16 Diagrammatic representation of stabilized body posture.

Body Structure

The spine The vertebrae The bones of the spine, together with the intervertebral discs and apophyseal joints, afford a degree of stability (Oda et al 1996, Putz and Muller-Gerbl 1996, Onan et al 1998). This stability is reduced in the more mobile sections of the spine, that is, the cervical and lumbar regions, especially during flexion and rotation. The intervertebral ligaments The vertebral ligaments, especially the short fibre connections between the individual vertebrae, provide the second line of stability. It is worth noting here that the very elastic ligamentum flavum connecting adjacent spinal laminae seems to play a role more in controlling movement than in resisting it. It is thought to assist the back extensor muscles in recovery from a flexed to an erect position, thus conserving energy (Oliver & Middleditch 1991). It is probable that this feature accounts for the tendency of the isolated cadaveric spine to extend when held in the normal orientation at the base, a feature found by Deane (personal communication) during his investigations into idiopathic scoliosis. Thus the ligamentum flavum may be the ‘trigger’ in the development of the extended postures frequently found in the more severe conditions, for example, late stage multiple sclerosis and profound brain injury. The action of this ligament highlights the need for, and importance of, the abdominal muscles in developing forward flexion of the trunk and countering any tendency towards extension. Forward flexion is essential for the performance of functional activities as most activities are performed in front of the body. The severe limitation in functional performance seen on occasion in people with severe cerebral palsy and following profound brain injury is a probable consequence, at least in part, of this inability to flex forwards (see p. 35, Fig. 2.9(a)). Muscular stabilization The deep short muscles spanning adjacent, or at most four, vertebrae are responsible for a large proportion of spinal stability (Moore & Petty 2001, Quint et al 1998). To be effective these muscles must work together and equally to compress the vertebral bodies together. The longer muscles, such as erector spinae and the

abdominal muscles when working synchronously and statically, provide further stability to the trunk as a whole (Zacharkow 1988). Asymmetry of action in these stabilizing muscles will disturb alignment and will initiate a bend in the spine in the direction of the muscle contraction. In the erect position, once a bend is initiated the original muscle activity plays no further part in any bending as gravity takes over. This is of particular relevance in the analysis of body posture (see p. 40, Fig. 2.14) in identifying cause and effect of a particular bend. For example, the ipsilateral muscles may initiate a bend of the trunk to one side, but the problem lies in the inability of the muscles on the contralateral side to oppose the bend, an effect similar to cutting one guy rope holding a mast erect. It is the lack of controlling action that must be addressed.

Intra-abdominal pressure Studies have shown that pressure within the abdomen contributes significantly to the support and protection of the lumbar spine (e.g. Bartelink 1957, Morris et al 1961) although the significance is disputed by Bogduk (1997). Intra-abdominal pressure is increased by abdominal muscle contraction, which provides a bracing effect to the lumbar spine and disperses otherwise damaging forces. The abdominal muscles are active even in quiet standing according to DeTroyer (1983). Thus lack of adequate abdominal muscle strength in the disabled person is likely to reduce both the support and the protection of the lumbar spine. In addition, it is highly probable that weak abdominal muscles contribute to the excessive lordosis found in some disabled people.

Shoulder, hip, knee and ankle joints Stability at the shoulder joint depends largely on muscle control, the ligaments being very lax as mentioned earlier. Control of the pelvis about the hip joint relies almost exclusively on the synchronous action of the abdominal and erector spinae muscles (Zacharkow 1988). Without this control the pelvis is free to ‘float’ (Pope 1988), that is to tilt forwards or backwards depending upon the forces acting upon it, e.g., tight hip flexors may pull the pelvis forwards, whereas tight hamstrings will tend to tilt the pelvis backwards.

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A complex arrangement of ligamentous attachments contributes significantly to stability of the knee, the cruciate ligaments being very important in this respect. Damage of the latter severely compromises knee joint stability. However, the large and powerful muscles acting on this joint add greatly to stability and are responsible for controlling alignment and enabling transmission of load across the joint. Lateral movement of the ankle joint is constrained by the malleoli and very strong ligaments while antero-posterior stability is dependent largely on the muscles. Albeit that quite strong ligaments attach the bones together, alignment and stability of the multisegmental foot, relative to the lower leg, is largely the responsibility of the long muscles controlling the ankle joint and the joints of the foot. Son et al (1988), using biomechanical modelling, found that the lower extremities played an important role in stabilizing the trunk in the seated posture, however this effect is reduced where there is weakness or paralysis of the legs, and forward reaching tasks are affected (JanssenPotten et al 2002).

SUMMARY In this chapter the meaning of a number of mechanical terms, relevant to the physical condition of the person with severe and complex disability and to their problems, has been explained. Examples have been given of the application of the terms and concepts to people with and without disability. The importance of plasticity and of the interdependency of form and function, in the treatment and management of people with severe disability, has been emphasized. Training can provoke change, which is the key justification for rehabilitation but to be effective the training must be appropriate to the condition, which in turn depends upon comprehensive assessment and analysis (see Ch. 5). An overview of the body structure and the main stabilizing mechanisms operating in the non-disabled person has been given, together with the effect of impairment of these mechanisms. An understanding of the main points in this chapter is essential if the physical condition of a disabled person is to be managed effectively.

REFERENCES Adams MA, Hutton WC 1986 The effects of posture on diffusion into lumbar intervertebral discs. Journal of Anatomy 147: 121–134 Anderson J, Almeida–Silveira MI, Perot C 1999 Reflex and muscular adaptations in rat soleus muscle after hindlimb suspension. Journal of Experimental Biology 202(Pt19): 2701–2717 Bach R 1977 Illusions: The adventures of a reluctant messiah. William Heinemann, p 60 Bartelink DL 1957 The role of abdominal pressure in relieving the pressure on the lumbar intervertebral disc. Journal of Bone and Joint Surgery 39B: 718–725 Bogduk N 1997 Clinical anatomy of the lumbar spine, 3rd edn. Churchill Livingstone, Edinburgh Buller AJ, Eccles JC, Eccles RM 1960 Interactions between motorneurones and muscles in respect of the characteristic speeds of their response. Journal of Physiology 150: 417–439 Burnham R, Martin T, Stein R et al 1997 Skeletal muscle fibre type transformation following spinal cord injury. Spinal Cord 35(2): 86–91 Cornell MS 1995 The hip in cerebral palsy. Developmental Medicine and Child Neurology 37: 3–18

Daly RM, Rich PA, Klein R et al 1999 Effects of high–impact exercise on ultrasonic and biochemical indices of skeletal status: A prospective study in young male gymnasts. Journal of Bone and Mineral Research 14(7): 1222–1230 DeTroyer 1983 Mechanical role of the abdominal muscles in relation to posture. Respiratory Physiology 53(3): 341–353 Devor M 1994 Plasticity in the neonatal and adult nervous system. In: Illis LS (ed) Neurological rehabilitation (2nd edn). Blackwells Scientific Publications, London, p 59–81 Edwards S (ed) 2002 Neurological physiotherapy, 2nd edn. Churchill Livingstone, Edinburgh Frost HM 2001 From Wolff’s law to the Utah paradigm: insights about bone physiology and its clinical implications. The Anatomical Record 262(4): 398–419 Ghosh P 1990 The role of mechanical and genetic factors in degeneration of the disc. Journal of Manual Medicine 5: 62–65 Goswami A, Ganguli S, Chatterjee BB 1987 Anthropometric characteristics of disabled and normal Indian men. Ergonomics 30(5): 817–823 Hare N 1987 The Human sandwich factor. Congress Lecture. Chartered Society of Physiotherapy, Oxford

References

Houlbrooke K, Vause K, Merilees MJ 1990 Effects of movement and weight bearing on the glycosaminoglycan content of sheep articular cartilage. Australian Physiotherapy 36(2): 88–91 Howe T, Petterson T, Oldham J et al 1992 Making muscles grow as they are told. Physiotherapy 78(10): 745–746 Janssen–Potten YJ, Seelen HA, Drukker J et al 2002 The effect of footrests on sitting balance in paraplegic subjects. Archives of Physical Medicine 83(5): 642–648 Kernell D 1998 The final common pathway in postural control — developmental perspective. Neuroscience and Biobehavioral Reviews 22(4): 479–484 Klein NJ, Sterck JG, Seimeins CM et al 2002 Donor age and mechanosensitivity of human bone cells. Osteoporosis International 13(2): 137–146 Kolb B 1995 Brain plasticity and behaviour. Lawrence Erlbaum Associates, Mahwah, New Jersey Koreska J, Robertson D, Mills RH et al 1977 Biomechanics of the lumbar spine and its clinical significance. Orthopaedic Clinics of North America 8(1): 121–133 Lawes N 2004 Neuroplasticity. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 57–72 Lebeer J 1998 How much brain does a mind need? Scientific, clinical and educational implications of ecological plasticity. Developmental Medicine and Child Neurology 40: 352–357 Lestienne FG, Gurfinkel VS 1988 Postural control in weightlessness. Trends in Neuroscience 11(8): 359–366 Low J, Reed A 1996 Basic biomechanics explained. Butterworth Heinemann, Oxford Luparelli S, Pola E, Pitta L et al 2002 Biomechanical factors affecting progression of structural scoliotic curves of the spine. Studies in Health Technology and Informatics 91: 81–85 McCarthy JJ, MacEwen GD 2003 Development of hip dysplasia in a child with perinatal contralateral above knee amputation. Journal of Pediatric Orthopaedics Part B 12(3): 103–105 Maekawa K, Soeda A, Yamada N et al 1987 The gravity center of children in supine and upright position. Jikeikai Medical Journal 34: 383–391 Marchigiano G 1997 Osteoporosis: primary prevention and intervention strategies for women at risk. Home Care Provider 2(2): 76–81 Miller JA, Schultz AB, Warwick DN et al 1986 Mechanical properties of lumbar spine motion segments under large loads. Journal of Biomechanics 19(1): 79–84 Moore A, Petty NJ 2001 Function of the spine. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 203–224 Morris JM, Lucas DB, Bresler B 1961 Role of the trunk in stability of the spine. Journal of Bone and Joint Surgery 43A: 327–351 Nachemson AL 1976 The lumbar spine: an orthopaedic challenge. Spine 1: 59–71 Niebur GL, Yuen JC, Burghardt AJ et al 2001 Sensitivity of damage prediction to tissue level yield properties and

apparent loading conditions. Journal of Biomechanics 34(5): 699–706 Norris CM 1995 Spinal stabilisation. Physiotherapy 81(2): 64–79 Nudo R, Friel KM 1999 Cortical plasticity after stroke: implications for rehabilitation. Review Neurology (Paris) 155(9): 713–717 Oda I, Abani K, Lu D et al 1996 Biomechanical role of posterior elements of the costovertebral joints and rib cage in the stability of the thoracic spine. Spine 21(12): 1423–1429 O’Dwyer NJ, Neilson PD, Nash J 1989 Mechanisms of muscle growth related to muscle contracture in cerebral palsy. Developmental Medicine and Child Neurology 31: 543–552 Oliver J, Middleditch A 1991 Functional anatomy of the spine. Butterworth Heinemann, Oxford Onan OA, Heggeness M H, Hip JA 1998 A motion analysis of cervical facet joints. Spine 23(4): 430–439 Pette D 2001 Historic perspectives: Plasticity of mammalian skeletal muscle. Journal of Applied Physiology 90(3): 1119–1124 Pope PM 1985 A study of postural instability in relation to posture in the wheelchair. Physiotherapy 71(3): 127–129 Pope PM 1997 Analysis of body configuration in people with cerebral palsy: Direction of scoliotic curves and possible predisposing factors. Presentation, Dundee ’97 Pope PM, Booth E, Gosling 1988 The development of alternative seating and mobility systems. Physiotherapy Practice 4: 78–93 Pope PM, Ainsworth K, Wade D 2000 Control of position in supine lying: the effect on loading and posture in multiple sclerosis subjects with spasticity. Poster presentation, Conference MS 2000 ‘The challenge of service provision’ Harrogate, 12–14th November Pope PM 2002 Posture management and special seating. In: Edwards S (ed) Neurological physiotherapy, 2nd edn. Churchill Livingstone, Edinburgh, p 189–217 Porter D 2004 Development of deformity in children with cerebral palsy. PhD thesis held by the Department of Biomedical Engineering, University of Dundee, Scotland Pountney T, Green E 2004 The cerebral palsies and motor learning disorders. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 313–332 Putz RL, Muller–Gerbl M 1996 The vertebral column – a phylogenetic failure? A theory explaining the function and vulnerability of the human spine. Clinical Anatomy 9(3): 205–212 Quint U, Wilke HJ, Shirazi–Adl A et al 1998 Importance of the intersegmental trunk muscles in the stability of the lumbar spine. A biomechanical study in vitro. Spine 23(18): 1937–1945 Root L, Laplaza FJ, Brourman SN et al 1995 The severely disabled hip in cerebral palsy. Journal of Bone and Joint Surgery 77A(5): 703–712 Shefelbine SJ, Tardieu C, Carter DR 2002 Development of femoral bicondylar angle in hominid bipedalism. Bone 30(5): 765–770

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Shields R 2004 Neuromusculoskeletal plasticity following spinal cord injury: A paradigm shift? Presentation, 2nd Nordic Seating Symposium, Oslo April 28th–30th Shirazi–Adl A, Ahmed AM, Shrivastava SC 1986 Mechanical response of a lumbar motion segment in axial torque alone and combined with compression. Spine 11(9): 914–927 Son K, Miller JA, Schultz AB 1988 The mechanical role of the trunk and lower extremities in a seated weight moving task in the sagittal plane. Journal of Biomechanical Engineering 110(2): 97–103 Sumner DR, Andriacchi TP 1996 Adaptation to differential loading: comparison of growth related changes in cross sectional properties of the human femur and humerus. Bone 19(2): 121–126 Thayer R, Collins J, Noble EG et al 2000 A decade of aerobic training: histological evidence for fibre type transformation. Journal of Sports Medicine and Physical Fitness 40(4): 284–289

Trew M & Everett T (eds) 2005 Human movement, 5th edn. Churchill Livingstone, Edinburgh Turner CH, Wang T, Burr DB 2001 Shear strength and fatigue properties of human cortical bone determined from pure shear tests. Calcified Tissue International 69(6): 373–378 Vrbova G, Navarrete R, Lowrie M 1985 Matching of muscle properties and motorneurone firing patterns during early stages of development. Journal of Experimental Biology 115: 113–123 Walters EH, Stickland NC, Lougha PT 2000 Expression of myogenic regulatory factors in denervated and normal muscle of different phenotype. Journal of Muscle Research and Cell Motility 21(7): 647–653 Zacharkow DJ 1988 Posture sitting and standing: chair design and exercise. Charles C Thomas, Springfield, Illinois

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2

Chapter

Posture

Massion (1992) likens functional performance to an iceberg with only the tip, the movement, being evident whereas most of the activity, the postural, is not. Posture underpins functional performance and is the main topic of discussion in this chapter.

CHAPTER CONTENTS Definition

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Function of posture 1. Antigravity

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23

2. Interface with the outside world Development of postural control Postural synergies Equilibrium

24

DEFINITION

24

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Motor learning and acquisition of skill 29 The intrinsic neuromotor apparatus What is ‘normal’ movement?

32

Postural attitudes and energy saving strategies 33 Analysis of postural attitudes in the non-disabled population 33 Analysis of postural attitudes in the disabled population 35 Summary References

43 44

29

Put simply, posture is the attitude or configuration of the body. Posture was described by Whitman (1924) as a ‘constant struggle against the force of gravity’. While true, postural control being complex, requires a rather more specific definition (Pope 2002). It is defined as the ability to:

• Conform to the supporting surface. • Organize balance and stabilize body segments

relative to each other and to the supporting surface. • Adjust to disturbance within the body system itself or to an externally imposed one. • Adopt the most appropriate arrangement of body segments for performance of the task in hand. • Offload the body segments required for movement. • Secure a fixed point (fulcrum) about which the muscles can act. This control of posture is gradually acquired over many years (Massion 1998).

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a)

b)

Figure 2.1 Diagrammatic representation of the erect symmetrical posture in (a) sitting and (b) standing. (Adapted from Pope 2002.)

‘Good’ posture is generally perceived as one that is erect and symmetrically aligned. Indeed, in discussions concerning posture, participants tend to adjust their position and sit or stand up ‘straight’ (Fig. 2.1). It is frequently the case that a disabled person coming for assessment will adjust his own posture at the beginning of the interview if he is able, or the person accompanying him will attempt to do so, at the same time saying ‘He doesn’t always sit like this!’ The fact that anything is said at all confirms the general perception that only a symmetrical erect posture is acceptable. On the other hand, if a so-called ‘bad’ posture is customarily adopted, there must be a good reason for doing so. The reason an erect posture is not maintained is simply the effort involved in doing so. The brain is concerned with efficiency of functional performance in terms of energy cost and effectiveness, as opposed to posture and movement per se. A perfectly aligned erect posture uses relatively little energy but any

deviation from this involves complex muscle adjustments to maintain equilibrium and in consequence, has a high energy cost. Such a posture is therefore not practical or feasible for everyday functional activity. Furthermore, the symmetrically aligned posture is not the ideal base for most functional activity. Functional effectiveness is dependent not only on stability but upon a postural configuration that is appropriate for the task. Functional activities involve movement sequences that are developed around a variety of postures acquired through experiential learning. In addition to functional efficiency, posture can only be termed ‘good’ if it does not cause damage to the body system. There are many examples of damage resulting from a ‘bad’ posture, but perhaps the most frequently encountered is the damage to the spine when lifting or handling incorrectly. All postures, however, are potentially damaging to the body system if any one posture is adopted for a sustained period, as at all times some tissues are

Function of Posture

under stress. The non-disabled person avoids damage by altering posture and position on a regular and frequent basis in response to sensory input signalling that dangerous levels have been reached in the stressed tissues. It is this lack of ability to move in response to such signals, or when the signals themselves are weak or absent, that presents a problem for the disabled person. The postures adopted are often sustained for long periods; the stresses are not relieved and damage occurs, for example, pressure ulcers, overstretched or even torn tissues. Thus any posture can be defined as ‘good’ if it meets the following criteria:

• Facilitates effective functional performance. • Is energy efficient. • Does not cause damage to the body system. There is often little to differentiate the posture initially adopted by the disabled person from that of the non-disabled person, other than that it predisposes to damage.

FUNCTION OF POSTURE Posture serves two main functions both of which may be subdivided (Massion 1998).

Figure 2.2 The young girl uses her limbs as she struggles to balance on a stool. (Reproduced from Edwards 2002)

1 Antigravity To provide the rigidity necessary to maintain an erect posture against the force of gravity, achieved through synchronous and reciprocal muscular activity governed by higher centres in the brain. To maintain balance, i.e. ensuring that the line of gravity falls within the base of support. The stability of the body segments provides the fixed end points required for effective muscle contraction. The stability of the system as a whole provides the base that facilitates efficient interaction with the environment (Howe & Oldham 2001, Massion 1998, Wu-Q & Swain 2002). It is the stability of the particular postural configuration and not the configuration itself that is important for effective functional performance. The range and magnitude of movement of the peripheral body segments is related to the degree of

control of the centre of gravity (CG) (Massion & Gahery 1978), a point well demonstrated in the gymnast and ballet dancer. The reverse is the case when balance is threatened; the whole body becomes involved in the struggle to maintain equilibrium. The non-disabled person experiences this phenomenon in any situation where there is a risk of falling, e.g. when walking on ice. Under these conditions discrete peripheral movements become difficult if not impossible, demonstrating that postural stability takes precedence over functional activity. This point is highly relevant to the disabled person struggling to maintain balance. Figure 2.2 illustrates clearly the point that progress in functional performance cannot be expected until stability of posture is secured.

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2 Interface with the outside world To form a reference frame from which to organize and orientate body segments in relation to each other and to the external world. To create a reference for action calculating the position of objects in the environment relative to the particular body posture and for planning any interaction. This function of posture, as an interface with the outside world, is often considered of secondary importance to the primary function of balance and stability. It deserves to be considered at least of equal importance. Knowledge of one’s posture and position relative to the environment is crucial for interaction between the two, a view endorsed by Galea (2004). In summary, one aspect of posture is concerned with the organization of the stiffness, balance and stability required to maintain an erect posture within a gravitational environment. The other function of posture serves as the means of knowing ‘where one is as well as how one is’ in relation to the rest of the world.

DEVELOPMENT OF POSTURAL CONTROL The mechanisms providing stability in an inherently unstable multi-joint structure such as the human body are enormously complex (see Ch. 1). The planning, organization and execution of postural control is even more complex. Only the major points are considered here. For further detail the reader is referred to the relevant literature, for example Massion (1992, 1998). Posture control is achieved through learning, albeit that innate reflexes exist in the newborn baby, for example antigravity extension, tonic neck reflexes. These very soon become deconstructed, reconstructed and reorganized as a result of experience in being and moving within, a gravitational environment (Okamoto et al 2001). An infinite variety of body attitudes are thus gradually acquired in non-disabled children, which serve to facilitate functional activity. The immediate task for the newborn is learning to recognize and become familiar with the constraints imposed by gravitational forces. These constraints

were designated by Massion (1992) as intrinsic, pertaining to the body system and extrinsic, relating to the environment:

Intrinsic constraints:

• Body configuration. • Muscle forces produced by contraction. • Effects of inertia. Extrinsic constraints:

• Gravity force. • Reaction of the supporting surface. • External and imposed accelerations

and

obstacles.

Experience of these constraints contributes to the development in the brain of a representation, body schema, of one’s own body system and its relationship to the environment (Gurfinkel et al 1988, Massion 1998, Massion et al 1998). The newborn baby illustrates well the ability to adapt to a dramatically different environment. The neonate has a predominantly flexed posture as a result of the confined space in the womb (Maekawa et al 1986) and tends to roll onto his side. His first task is to become aware of weight (Massion 1998) and balance. At this stage the centre of gravity (CG) is relatively high, in the region of the 10th–12th thoracic vertebrae. It does not descend to the adult level until around 15 years of age (Maekawa et al 1987a). Within a few days the baby learns to adapt his body to the supporting surface. He is then able to lie balanced and stable in the supine and prone positions when placed. Ability increases enabling the organization of body segments relative to each other and to the supporting surface; stabilizing a position when placed; progressing to movement within and around the base while maintaining balance and stability of position; gradually adopting a variety of ever more complex postures suited to the performance of increasingly more complex tasks. In considering the development of functional movements/activity and increasing complexity, the notion that any task is composed of discrete units or elements should be avoided (Grimm 1983). Human functional movements are immensely

Development of Postural Control

Postural control

Orientation

Balance

Movement control Feedforward control of posture

Multisensory inputs Vision Labyrinthe Proprioception Cutaneous Graviceptors

Body schema incorporating: awareness of: Weight Inertia Verticality Geometry Support Relation to environment

Head Local feedback Postural networks

Trunk Local feedback Limbs Local feedback

Feedback control of posture

Figure 2.3 Diagrammatic representation of postural control and the separate but integrated control of movement. (Adapted from Massion, 1998.)

variable and adaptable according to the circumstances of the moment. A totally integrated system of postural control is not achieved until the age of about 15 years in the non-disabled child (Steindl et al 2004). The organization of posture is under the control of the central nervous system and is highly adaptable to changing conditions and circumstances (Galea 2004, Patron et al 2002, Vernazza et al 2000). The brain uses two reference mechanisms by which to establish the erect posture (Massion 1998, Massion et al 1998). The first relates to the alignment of body segments with respect to a vertical axis and relies on multisensory input, in which proprioception plays the major part (Fig. 2.3). The second relates to organization of body posture with respect to mass and ensures that the projection of the CG falls within the base of support. As an example, leaning forwards induces a tendency to fall forwards that is countered by backward displacement of hips and knees ensuring that the body is balanced and the projection of the CG remains within the base of support. Using both these mechanisms the brain controls the arrangement of body segments so that balance and stability are maintained. The evidence for these two separate but integrated mechanisms by which the erect posture is established comes from experiments in microgravity and makes for fascinating reading. Much

work is published on this topic. As an introduction readers wishing further information are referred to Massion (1998), Massion et al (1998) and Gurfinkel et al (1993). In the sequence of development of postural control, vision plays a crucial role. Head control is well advanced by the end of the first year of life (Woollacot et al 1996). It is postulated by Massion (1998) that the head acts as a reference for the rest of the body and its position with respect to the external world. The initial dominance of this ‘top down’ development indicates that the primary purpose of posture in the initial stage of life is perceptual rather than antigravity. This dominance diminishes with increasing ability to organize body segments, when a ‘bottom up’ development emerges as the child attains an upright posture, a process that continues for many years (Maekawa et al 1987b), Massion 1998, Pountney et al 1990). Proprioception is crucial to this development. There is evidence that in some children with cerebral palsy this reversal of a ‘top down’ development does not take place, the child continuing to utilize immature postural reactions in response to disturbance of equilibrium (Brogen et al 1996). It is important to recognize that these two stages in the development of postural control, ‘top down’ and ‘bottom up’, are not discrete or acquired in series but are separate elements in a highly integrated process.

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POSTURE

under which learning took place, highlighting the flexibility and adaptability of the neuromotor system (Galea 2004, MacPherson 1991, Vernazza et al 2000).

Equilibrium

Figure 2.4 Body mass adjustments to maintain equilibrium are seen in this child; a backward movement of the pelvis counters the forward bending of the trunk.

Functional movements are acquired in parallel with the development of a stable postural foundation. Although a separate central control of movement is evident from some studies (reviewed in Massion et al 1999), posture and movement control are closely integrated systems incorporating the higher brain centres, basal ganglia, the brainstem, cerebellum, sensory and motor mechanisms (Rothwell 2004).

Postural synergies Selection of the specific postural configuration for each performance of a particular task from the infinite range of possibilities provided by such a highly flexible body system would be enormously cumbersome. Synergies, or preset combinations of adjustments acting together as one, are used to reduce the range of possibilities or options, thereby increasing efficiency (Massion 1998). These synergies are gradually acquired and simplify activation of the appropriate postural adjustments in a given situation. In Figure 2.4 the CG is maintained within the base of support by the synergic action of forward bending of the trunk and backward movement of the lower part of the body. Postural synergies result from experiential learning, eventually becoming automatic within prescribed circumstances. They remain modifiable should the circumstances differ from the original

The nature of the inherently unstable body structure is indicative of both the ease with which equilibrium may be disturbed and the complexity and sophistication of the mechanisms required to stabilize it. A static posture, albeit a balanced and stable one, is of limited usefulness. Functional activity and interaction with the environment requires stability under dynamic and ever changing conditions. Disturbance of equilibrium/imbalance is caused by:

• Forces

produced internally by muscle contraction. • Change in body configuration (posture). • Change in the position of the centre of gravity. • Externally imposed forces such as movement of the supporting surface or obstacles. Dynamic control of posture is the ability to make adequate adjustments within the body to counter the destabilizing forces and the tendency to fall. Balance and stability are secured by adjustments in stiffness (muscle tone) and adjustment of body segment configuration, ensuring that the CG remains within the base of support. Stability under dynamic conditions is dependent upon a feedback mechanism, which is essentially corrective after an action has occurred; and a feed forward mechanism, which is predictive and greatly improves efficiency. Multisensory input plays a major role in both mechanisms.

Feedback As the name suggests feedback is a mechanism that operates after the action has taken place. Feedback evaluates the degree of effectiveness of the posture/movement/task undertaken and informs the brain of the degree of error that needs to be addressed. In addition, the error is registered by the brain and used for future reference, thus forming part of the learning process (Peterka & Loughlin 2004). Feedback is therefore essential for the acquisition of a skill and is the foundation of

Development of Postural Control

a mature feedforward mechanism of control. Debarere et al (2004) studied the changes in brain activation associated with skill acquisition initially involving sensory feedback and corrective action planning, proceeding to automatic performance and forward control. If dynamic posture relied only on feedback the body system would not be able to counter the initial disturbance and would be relatively slow in correcting error. Both these features would reduce effectiveness and increase the energy consumed in any activity.

Feedforward Feedforward is a mechanism that ensures postural adjustments take place prior to the onset of movement. They are learnt reactions that anticipate the degree of disturbance likely to occur as a result of internally or externally produced forces. These anticipatory postural reactions (APR) minimize the disturbance. In addition, they serve to provide additional force, assisting performance of the task in hand (Lee et al 1990). The APRs conserve energy and increase functional effectiveness. Although a basic response to disturbance has been observed in children as young as 4–5 months, APRs depend, in the main, upon experiential learning and take time to mature during childhood (Massion 1998, Van de Fits et al 1998). Feedback and feedforward mechanisms are illustrated in Figure 2.5. Lifting the right arm to the side precipitates a drag on the trunk and movement of the CG to the side of the moving arm, both of which tend to destabilize posture. If this activity relied solely on feedback, the delay involved in detecting and transmitting the error and activating a response to and from the brain would lead to an initial high degree of disturbance followed by correction. The time delay in correction would produce an oscillation of the body from side to side, gradually reducing in amplitude as shown in a recent study (Peterka & Loughlin 2004). Efficiency is increased by application of a feedforward system that anticipates the likely disturbance. In the example given above, the CG moves to the opposite side in advance of the arm movement to the left, and the appropriate muscles at the ankle, hip and trunk contralateral to the moving arm are simultaneously

Figure 2.5 The tendency to drag the body to the same side when raising the arm is resisted by anticipatory muscle action on the contralateral side limiting the disturbance.

activated. This anticipatory action minimizes disturbance and increases efficiency. The neural circuits mainly involved in the acquisition of APRs are the basal ganglia, supplementary motor area (SMA), pre-motor area (PA) and motor cortex (M1) (Massion at al 1999). The cerebellum is also thought to play a major part in the automatic implementation of APRs. The importance of experiential learning in the development of APRs should not be underestimated. It holds great significance for training in the child with postural and motor impairment as well as for re-training balance and stability in people who have lost that ability through trauma or disease. It is equally important to recognize that transference of APR from one situation to another is not automatic, highlighting the need for training in a wide variety of situations (Massion et al 1998). In addition, correct prediction of the appropriate anticipatory reaction is reliant on familiarity with the environment, e.g., the size, shape and weight of

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POSTURE

objects to be handled as well as their position relative to the body. Thus the importance of sensory stimuli in the development of a feedforward mechanism is emphasized.

Multisensory input The components of sensory input are vision, the vestibular system, tactile sensation and proprioception. The sensory input is a highly integrated system that works to reduce ambiguity, as in the example used by Jeka et al (2000); movement detected visually could be movement of the environment relative to the person or the person relative to the environment. The dilemma is resolved by the vestibular apparatus, which identifies whether the head is moving or not. Generally, the loss or absence of one sensory modality leads to an increase in sensitivity in the remaining modalities with expansion into those areas of the brain normally occupied by the absent or lost modality. An example of this brain reorganization, in the rat, is given by Rothwell (2004).

Visual and tactile inputs Vision and touch are important in orientating the head position in relation to the environment and adjusting the body accordingly (Woollacot et al 1996). The vestibular system

The vestibular system has two types of sensors, the semicircular canals and the otoliths. The semicircular canals are primarily concerned with monitoring head position and the erect posture relative to the environment. They enable activities such as walking in the dark. The otoliths regulate eye movements in order to stabilize the visual field (von Baumgarten & Thumler 1979). Children with reduced or absent vestibular function use other sensory input, such as vision, to compensate in posture control, but are severely disabled when this too is impaired (Shumway-Cook 1992).

Proprioceptive input Proprioception is the means by which the configuration of body segments with respect to the external world is monitored, and underpins stability of the erect posture. It is of interest that proprioception is highly developed by the age of 3–4 years in the non-disabled child while vision and vestibular input with respect to posture

reaches maturity only in adolescence (Steindl et al 2004). It is difficult to function without proprioception but as in a case reported by Ingram et al (2000) it is possible to learn to do so but it takes considerable time and attention to the task.

The timing of input A point of some significance for the normal maturation of the neuromotor system stems from animal experiments in which a critical period was found to exist when appropriate stimulation must be given. If deprived during this period the system fails to develop normally. Vrbova et al (1985) found that, in the rat, potential fast-acting muscle fibres, deprived of an increase in neural firing rate at a particular time postnatally, remained slow-acting despite appropriate stimulation being given at a later time. The concept of critical periods has been known for many years. Hubel & Wiesel (1963) found that kittens experiencing visual deprivation at a critical period failed to develop normal vision even though visual stimulus was restored later. While these findings have some implications for the child born with neuromotor impairment, the brain is extremely plastic especially in the developing child and has been found to accommodate damage to a remarkable degree in some cases (Lebeer 1998). While the developing brain tends to be most adaptable it is essential to recognize that, given appropriate training and environment, the potential to improve performance remains throughout life in the human being (Galea 2004, Lebeer 1998). In summary, the organization and control of posture is an ability acquired through experiential learning during childhood for the purpose of facilitating efficient functional activity. Where balance is threatened stability of posture takes precedence over functional activity. The priority of posture in the first months of life, indicated by the early development of head control, is to serve as a reference frame for position and interaction with the external world. With maturity the importance of the antigravity role of posture emerges, reversing the initial ‘top down’ development of posture control to a ‘bottom up’ development that continues well into childhood. The

Motor Learning and Acquisition of Skill

importance of sensory input to facilitate experiential learning in the development of dynamic control of posture has been emphasized. The timing of this input may have some significance.

Time 1

Time 2 (ii) Changes in strength of populations of synapse

(i)

MOTOR LEARNING AND ACQUISITION OF SKILL Time 1

A skill has been defined as an activity that is accurate, consistent and efficient (Higgins 1991). There are many theories relating to the means by which learning occurs, for example, the maturation theory of Gessell et al (1974) in which periods of instability during the learning stage alternate with periods of stability; or the perceptual cognitive approach of Bressan & Woollacott (1982) in which trial and error play an important part in learning. (For a review of differing theories the reader is referred to Galea 2004.) Edelman’s (1993) theory of neuronal group selection (TNGS) proposes that learning in the neonate is the result of initial random movements, reinforced when a ‘target’ is reached; the baby feels ‘rewarded’ and is encouraged to repeat the activity. This concept is represented diagrammatically in Figure 2.6. In Figure 2.6(a) all neural pathways are open, and firing along all paths is equally likely. When a random activity has proved ‘successful’ it is more likely to be repeated and the neural pathways utilized will be strengthened (Fig. 2.6(b)). In this way groups of neurones involved in the performance of the activity are strengthened while neural pathways not used will be weakened and are progressively less likely to be utilized. Gradually, neural networks form groups pertaining to particular movements or skills. With an increasingly large repertoire the selection of movement and combinations of them for a particular activity becomes ever more complex. Selection is facilitated by the formation of combinations of groups that interconnect within and between each group and combination of groups. The larger groups form the basis of postural synergies and learned set motor skills. They are used to simplify the complexity in control of posture and functional activity. It is emphasized, however, that these groups are not fixed combinations; they are readily modifiable according to circumstance.

a) Immature neural network with all pathways open

Time 2 b) Neural network illustrating (i) reinforced and (ii) weakened pathways

Figure 2.6 Diagrammatic representation of an immature neural network (a) showing all pathways are open. In (b) organisation of the network has occurred with selective use and strengthening of some neuronal pathways and weakening of those not utilized. (Adapted from Edelman, 1993, p 116, with permission from Elsevier.)

Edelman’s hypothesis of selection and (re)combination (TNGS) seeks to explain the great flexibility, adaptability and efficiency that is characteristic of animal and human movement. It provides a framework by which variations in motor development and behaviour are explained (Hadders-Algra 2000). Whatever the theory, all agree on the three basic requirements needed for learning of any kind to take place. These are an intact neuromotor apparatus, memory and repetition. In addition, there are other factors that facilitate learning such as the desire to learn, usefulness of the task being learnt and adequate time for the learning to become embedded. The dynamical systems approach, described by Galea (2004) takes these aspects into account in addition to the essential neurophysiological, biomechanical and psychological elements of the learning process.

The intrinsic neuromotor apparatus The basic neuromotor apparatus for the acquisition of posture and motor learning is present at birth in the neonate. Final shaping is dependent upon maturity and experience. With maturity and experience, changes occur at the micro/cellular level that are, ultimately, manifest at the macro/ organ level.

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Intrinsic Body shape Inertia forces Muscle contraction

Extrinsic Gravity Ground reaction Acceleration Obstructions

Molding of the intrinsic mechanism Morphology Physiology Biochemistry

Form

Function

Figure 2.7 The interdependent relationship between form and function is itself dependent on the specific characteristics of the individual and the environment.

Figure 2.7 represents the process of moulding the intrinsic neuromotor system within the specific constraints of the individual and his environment and highlights the interdependence between the body system (form) and the demands made upon it (function). An outline only of the system is given here for completeness. Basic knowledge of the neuromotor mechanisms involved is assumed. For more indepth study the reader is referred to the relevant textbooks and literature. The components involved in motor learning are:

• The

planning and executive centres, which include the pre-motor area of the brain, the supplementary area, and the motor cortex. • The regulatory, co-ordinating and automatic areas, which include the brainstem, basal ganglia and cerebellum. • Peripheral pathways both sensory and motor and their respective receptor and effector organs. In general, the cerebral cortex is involved with planning and executing voluntary movement while posture and equilibrium are controlled by the brainstem and spinal cord (Crow & Haas 2001). There is some debate related to the degree of involvement of the cortex in learning some basic skills. It has been argued that locomotion, for

example, while requiring an element of motivation, is not associated with higher cognition and is acquired at sub-cortical level (Defebvre & Kemoun 2001, Thelen 1983). The brainstem, basal ganglia and cerebellum are concerned with the quality of movement and appear to drive the central pattern generators (Contreras et al 1997, Defebvre & Kemoun 2001, Grillner et al 1995) that are involved with basic and gross activity such as locomotion. The cerebellum plays an important role in regulating and coordinating the automatic application of learnt postural synergies and the stereotypical movement patterns that increase efficiency. By taking on these roles, the cerebellum frees the cortex to concentrate on other things, as in listening to music or holding a conversation while driving a car. The performance of parallel activities such as this becomes impossible if the circumstances change, as in accident avoidance when driving a car. Control is then transferred back to the cortex for a considered response. Performance of parallel activities is often impaired following brain damage, the person so disabled can only concentrate on one thing at a time (Dault et al 2001, de Visser et al 2003, Haggard & Cockburn 1998), which compromises ability to function in the wider context of daily living. It is a useful indication of skill acquisition, when an individual is able to perform two things at the same time, for example, simple arithmetic while walking. Lesions in the areas of the brain involved primarily with posture control, as the basal ganglia in Parkinson’s and Huntington’s diseases and cerebella disease, result not only in postural deficit but also in diminished movement and functional performance, emphasizing the close relationship between posture and function.

Memory Learning a task requires retrieval, initially from short-term memory during the learning/training process but later from the established memory bank, i.e. long-term memory (Phillips 2001). A skill can truly be said to be learnt when it can be retrieved from long-term memory and applied at will with a consistency in performance.

Motor Learning and Acquisition of Skill

Repetition In order to reach a consistent level of performance the task requires considerable practice; the more complex the task the more practice is required. A child will take 2–3 years to reach a level of stability in locomotion; a violinist will need to practice for approximately 4500 hours to reach a professional level of competency (Phillips 2001). The greater part of skill acquisition is experiential, that is, actually carrying out the same task and repeating it over and over again until it reaches the stage where it becomes automatic. Most importantly, the task will need to be practised on a frequent and regular basis if a high level of skill is to be maintained. We are all familiar with the adage ‘use it or lose it’! It is possible however, to assist the learning process and to improve the level of competency, through means other than actually performing the skill (Jackson et al 2003, Sisto et al 2002). It has been shown and indeed is commonly recognized that watching a video of skilled performance, for example, helps to improve performance. Going over the task in one’s mind is also beneficial. However, Mulder et al (2004) demonstrated that healthy adults were unable to acquire a particular skill entirely without practice, a result that emphasizes the importance of experience in motor learning.

Facilitation of skill acquisition In addition to the fundamentals of an intact mechanism, memory and repetition, skill acquisition is facilitated by time, the relevance and usefulness of the task being learnt and the context in which the learning takes place. The developmental stage at which learning takes place may also be important (see p. 28 critical periods).

Time

While repetition ‘drives’ the reorganization of the neural networks, time is required for that reorganization to occur (Karni et al 1998, Kleim et al 2004). Training is practice over time. It is the sustained ‘stress’ on the system that strengthens the relevant neural networks and stimulates reorganization. The importance of sleep following training in a new skill is increasingly recognized. Sleep is believed to be important in the laying down of memory traces (Walker et al 2003).

The following example, in a non-disabled case, serves to illustrate the point that immediate improvement in performance will not result from changed, albeit improved, conditions: time for the neural system to adapt is necessary. A golfer reaches a level of play beyond which he seems unable to progress. He consults a professional and undertakes a series of lessons. Initially his performance may well deteriorate. He must apply and practise what he has been taught over a considerable period of time before his new technique improves his performance, which hopefully overtakes his previous best. This same principle applies to the learning and relearning in the disabled person. It is important that those caring for the disabled person also realize that time is needed to acquire a new or improved skill. On changing the posture and/or support of a disabled child in sitting, for example, the parent or care provider often expects immediate improvement in some aspect of the child’s ability. In fact the changed conditions are more likely to decrease performance initially but predispose to an improvement on previous performance with practice.

Context

The context in which learning takes place is also important. Training should, as far as possible, be applied in the situation in which it will be used (Galea 2004, Hesse & Werner 2003, Massion et al 1999, Mulder & Hochstenbach 2001). For example the ability to climb stairs in the hospital does not mean that the disabled person can do so at home or outdoors. A skill learnt in one situation is not directly transferable to another situation. Some degree of adaptation is almost always required. For example, a competent driver in one car will require a little time to familiarize himself with a different car, the automatic action in the one car is referred for cortical attention and adaptation in the other. Having learnt the skill in one situation the same postural synergies are tried and adapted to the new situation: a type of deconstruction of the original skill followed by a reconstruction under the different conditions takes place (Phillips 2001). This reconstruction may require considerable practice over time if the conditions differ significantly.

Relevance Acquisition or relearning of a skill is assisted if the task is useful to the disabled person,

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e.g., transferring to the toilet rather than moving along the plinth. If the task is something he cares passionately about the disabled person will strive very hard to achieve his objective in spite of a poor prognosis. Hochstenbach & Mulder (1999) stress the importance of the psychological aspects in learning or relearning a skill.

WHAT IS ‘NORMAL’ MOVEMENT? A stable configuration of body segments is the foundation upon which functional movements and skill are built. The precise manner in which a skill is performed will accord with the particular constraints, intrinsic and extrinsic (p. 24) under which learning took place, i.e., the particular conditions will determine the posture, which in turn will determine the movement behaviour. The postural synergies and functional movement patterns/strategies, used by people generally, are learnt under the same environmental (gravitational) conditions. Thus they are similar but they are not identical. Differences are evident in many familiar situations, e.g., it is possible to identify a person by their footsteps or by their writing, and they may differ in other activities such as the manner of tying shoelaces, etc. The differences are the result of the individual variations in body morphology and physiology found in a given individual (Alexandrov et al 1998). Thus postural and movement strategies develop that are best suited to the particular conditions pertaining to each individual. With this understanding, ‘normal’ movement may be defined as the skill, acquired through learning, for the purpose of achieving the most efficient movement or performance of a given activity in terms of energy, cost and effectiveness, and is unique to the individual. The reader will recognize the similarity with the definition of ‘good’ posture (p. 23). Efficiency is the objective of both posture and movement. The desire to move and interact with the environment is common to all individuals, disabled and non-disabled people alike. The disabled person seeks to function as efficiently as his body system will allow. He will endeavour to do so by developing movement strategies specific to his

condition or, as in the child with cerebral palsy, he will utilize immature movement patterns. The movement strategies that he uses should be recognized as ‘normal’ given the particular conditions under which they persist or are acquired (Brogen et al 1996, Latash & Anson 1996, Mulder et al 2002, Pope 2002). Different conditions lead to different motor/functional behaviour, which leads to different neural organization. The term abnormal when applied to this difference in motor/functional behaviour is, in this author’s opinion, inappropriate. An appreciation of the underlying reason for these so-called abnormal movement strategies is essential if they are to be correctly analysed, interpreted and, when appropriate, modified. The following example illustrates the point. The individual born with a paralysis or paresis of an upper limb as in Erb’s Palsy will develop different posture and movement strategies from the non-paralysed child, but they are efficient given his intrinsic constraints. When running, he will hold his weak arm close to his side and he tends to twist his trunk, the better to maintain balance and rhythm. Under conditions that were somewhat analogous to those of the child with Erb’s palsy, Donker et al (2002) demonstrated altered muscle activity and movement patterns when adding weights (mass) to an arm or a leg in non-disabled subjects. These researchers concluded that the changes occurred to maintain balance and rhythm. Similar adaptations to the intrinsic constraints or conditions are seen in the child born with cerebral palsy who will attempt to move in spite of his impairment. Such movements may be minimally effective but are the ‘best’ that he can achieve in the particular circumstances. This same interpretation may be applied to acquired conditions such as amputation of the whole or part of a limb, or paralysis following stroke. While accepting that such strategies lead to a measure of efficiency, they are less efficient, on the whole, than those used by the non-disabled person. Underlying the decrease in efficiency are the limited postural options or variations in configuration that he is able to adopt. When these less advantageous conditions persist, progression beyond a certain point is not possible, with the result that his whole repertoire of movement and function is limited.

Postural Attitudes and Energy Saving Strategies

Interestingly, Roby et al (2003), monitoring recovery following stroke, noted that functional improvements were due to recovery of ‘normal’ movement in some subjects and to increased efficiency in compensatory strategies in others. Not surprisingly, those patients using compensatory strategies were less efficient in their performance. Fortunately, the mechanical conditions are modifiable, and improvement in performance remains possible at all ages (Galea 2004). Altering base posture and position to something more mechanically advantageous should be the underlying principle in rehabilitation and ongoing physical management. It provides the foundation upon which to facilitate more efficient movement strategies in those who have never developed them or who have lost them. With training, new more efficient motor behaviour is encouraged with eventual plastic change in the neural circuitry (e.g. Kidd et al 1992, Personius & Balice-Gordon 2002, Woollacott et al 1996). It must also be recognized that pursuit of the ‘normal’ as perceived by the non-disabled person is not always appropriate, as illustrated by Paulsson (1995) in her study of the views of people affected by thalidomide. As adults many were angry and resentful of the attempts to make them appear ‘normal’. Nor perhaps is it valid when it is unlikely that training will improve upon a current ‘best’ performance. The challenge for the HCP is to determine at what point intervention is not in the best interest of the disabled person. Each case must be judged on its own merits. In summary, a stable posture is the foundation for movement and the movement pattern/behaviour is determined by the conditions that are imposed on the individual by the particular intrinsic and extrinsic constraints. Posture and movement are separate, centrally controlled systems that develop in parallel and are highly integrated. Efficient motor learning and skill acquisition require an intact neuromotor apparatus, memory and repetition. Learning is further facilitated by time, usefulness of the task to the individual and the context in which training is carried out. Although there may be a critical period for neural maturation in some respects, the ability to learn is

ongoing. There are occasions, however when the pursuit of normalcy is not appropriate.

POSTURAL ATTITUDES AND ENERGY SAVING STRATEGIES The postures adopted by non-disabled people are those that facilitate efficient performance of the task in hand. In order to understand how and why people with a disability adopt certain postures it is useful first to analyse and interpret those found in the nondisabled person.

Analysis of postural attitudes in the non-disabled population On page 22 it was noted that the erect symmetrically aligned posture is rarely adopted for any length of time, as it requires too much energy to maintain it. In the erect posture the greatest effort is directed towards maintaining stability of the pelvis about the highly mobile hip joint; in maintaining the spine erect; in balancing the head over the shoulder girdle and, additionally in standing, stabilizing the joints of the lower limbs. Instead of these highly ‘expensive’ postures the non-disabled person uses energy-saving strategies as illustrated diagrammatically in Figure 2.8 (a), (b) and (c) which means, in effect, controlling the mobility of the ‘linkages’ (Ch. 1, p. 13), in particular the pelvis about the hip joint, the lumbar and cervical regions of the spine, knees and the feet. The postures illustrated are interpreted as follows.

In sitting In Figure 2.8(a) the pelvis is tilted backwards and the person leans against the backrest. In this position the pelvis requires little, if any, effort to control its position; the ligaments of the lower spine now limit the degree of posterior tilt. The posteriorly tilted pelvis flattens the lumbar curve, the spine flexes forwards with the upper trunk virtually hanging on the ligaments; the vertebral bodies are compressed anteriorly, all of which reduces the muscular activity otherwise necessary to stabilize the spine. The CG is

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a)

b)

c)

Figure 2.8 Energy saving postures frequently seen in the non-disabled population are represented in (a) and (b) sitting and (c) standing. (Adapted from Pope 2002.)

lowered with the result that balance is easier. In addition, lowering the trunk and head brings work surfaces closer, reducing the distance of arm travel and therefore the effort in moving the arms. Every strategy has a ‘trade-off’. In this case:

• The

weight now falls behind the base area, introducing a horizontal force predisposing to sliding forwards on the seat (Pope 1985). This tendency may be countered by crossing one leg over the other; the weight of one leg on top of the other reduces the muscle action that would otherwise be required to prevent sliding (Zacharkow 1988). • With the spine flexed, the upper trunk rolls forward and balance of the head over the trunk is not possible. Greater muscle activity is required to hold the head erect and maintain a horizontal visual field. In Figure 2.8(b) The individual leans forwards onto a surface. The work of stabilizing the pelvis and spine is reduced as the table is taking much of the load. The body height is lowered and the trunk is

balanced over a wide base of support, therefore very stable. The arms act as props for the trunk and head. In this case the ’trade-offs’ are:

• The high pressure arising under the elbow as a result of supporting the upper trunk and relatively heavy head. • Arms that are used for support cannot be used for other activities.

In standing In Figure 2.8(c) energy is reduced by adopting a posture that uses the ligaments for support wherever possible. The effort of stabilizing the hip joint is reduced by allowing the pelvis to drop on the non-weight bearing side and to rotate anteriorly, thus relying more on the ligaments for stability. The thoracic ribcage, intervertebral discs and apophyseal joints provide a limited degree of stability, (p. 17). Lateral curvatures are introduced within the spine, compressing the intervertebral discs on the concave side and using the ligaments on the opposite side to stabilize each vertebral segment.


The postures described cause high levels of stress to build up in the tissues, mostly in the ligaments under tension and within the intervertebral discs and tissues under pressure. Sensors within the tissues signal discomfort and alert the brain of the need to change position if damage is to be avoided. The individual alters position and transfers the load to other tissues until they too ‘complain’. This method of conserving energy is repeated, with the non-disabled person constantly adjusting position to avoid damage to the tissues, usually without being aware that he is doing so.

a

Analysis of postural attitudes in the disabled population The disabled person has the same need to stabilize posture in order to make best use of any remaining ability. Some of the frequently encountered postures in lying, sitting and standing that are adopted by people with the more severe and complex conditions will be analysed and interpreted. Before doing so it is essential to emphasize that a stable posture is not synonymous with a symmetrical posture. A seriously bent and buckled posture can provide the stability required for function. Indeed the bending and buckling are likely to be the consequence of the strategies used to gain the stability required to function, rather than the cause, a point of significance when surgery is being considered to correct a deformity.

In lying Figure 2.9(a) illustrates a supine posture frequently encountered in the more severely impaired person, e.g. following catastrophic brain injury, or in severe quadriplegic cerebral palsy. If the posture is analysed it is found that:

• The spine is extended. • The head, shoulders at one end and the sacrum at the other are the main load bearing areas.

The ‘trade-offs’: The disabled person lying in this position will have difficulty in or be unable to:

• Lift

his head or shoulders as they are weight bearing. • Flex his trunk because the abdominal muscles are stretched and are therefore at a mechanical disadvantage.

b

Figure 2.9 Typical lying postures seen in people with severe postural impairment (a) in supine and (b) in prone.

• Transfer the weight to a central fixed point (the pelvis) about which to flex.

Thus any activity, voluntary or reflex, is only possible in extension. Unless these disadvantageous mechanical conditions are modified (Ch. 6, Section 1), the disabled person has no alternative other than to attempt to function or to express himself by extending his spine. Being unable to move otherwise, the movement pattern is persistently reinforced and the neural pathways serving the activity become organized accordingly and well established. Obviously, attempts to function in this way are largely ineffective and severely constrained. Similarly, Figure 2.9(b) illustrates a typical prone lying posture where the loading is at either end of the body, that is, head/shoulders and knees, with the result that the only movement possible in this position is flexion.

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a)

b)

Figure 2.10 (a) Diagrammatic representation of the forward flexed slumped posture adopted by many people when weakness and fatigue are a problem (b). (Reproduced from Edwards 2002)

In sitting The posture of the person in Figure 2.10 may be considered a caricature of that adopted by the nondisabled person in Figure 2.8(a). The overall shape is the same but the curves are greater indicating that the posture has been sustained over long periods of time. This posture is seen in people with differing neurological pathologies where weakness and/or fatigue predominate. It is then compounded by gravity. The development of such a posture is often gradual. In deteriorating conditions such as that found in people with multiple sclerosis (MS), the increasing weakness and/or fatigue, in sitting, causes the trunk to fall forwards. The disabled person himself or his care provider will overcome the problem instinctively, by deliberately sliding or pulling the hips forward. This action has the effect of tilting the pelvis posteriorly, lowering the occupant in his seat, throwing the weight against the back support, creating the posture shown in Figure 2.8(a) above. With continued use of the same posture the spinal ligaments stretch, the upper trunk rolls further forward, in some cases right over the base of support.

While this posture requires little energy, is relatively stable and enables a degree of functional activity, the ‘trade-off’ lies in the effort required to hold the head up. In practice, the disabled person reduces this activity to a minimum by lifting his head for a particular purpose only, e.g. to speak to another person, otherwise he will allow the head to hang down, putting further stress on spinal ligaments, especially those in the cervical region. In severe weakness, instead of raising his head to look forward, the person will rotate it, sometimes accompanied by twisting in the seat. Many people adopt the slumped posture in order to function, therefore great care must be taken to assess how a disabled person is functioning prior to advising any change. The posture illustrated in Figure 2.11 is rarely encountered in the non-disabled population to any significant degree. Where muscle control is inadequate the pelvis may tilt anteriorly instead of posteriorly. The anteriorly tilted pelvis is seen most frequently, but not exclusively, in the person with the more severe forms of cerebral palsy (CP); following severe brain damage; in muscular dystrophy and in MS. Factors observed to correlate with this posture are tight hip flexors, extensor pattern activity, flaccid


paralysis, hip dislocation and surgical removal of the head of the femur. With the pelvis tilted forwards the anterior ligaments of the lumbar spine are put on tension; the CG is lowered and the upper trunk and head are centred over a wide base of support. Thus stability is gained and function facilitated. However the ‘trade-off’ in this situation is the continuing downward force exerted by the upper trunk, which increases the stress on the anterior ligaments of the lumbar spine. These ligaments stretch correspondingly, gradually increasing the lumbar lordosis and anterior tilt of the pelvis with concurrent tightening of hip flexors. This posture is not improved by leaning backwards and is one of the most challenging when support is considered, especially in the most severe cases. Figure 2.12 demonstrates a clever strategy to gain stability and is often combined with that shown in Figure 2.10. It usually, but not always, develops gradually in people with a deteriorating condition. The sequence is as follows.

a)

Figure 2.11 The pelvis may tilt anteriorly when muscle control is lacking. The weight of the trunk acting downwards then compounds the problem.

b)

Figure 2.12 A tendency to fall to the left side is resolved by tilting the pelvis towards that side, using the muscles of the stronger right side to maintain equilibrium. The left arm is used as a prop and assists support of the trunk.

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When, as a result of increasing weakness and/or fatigue, the disabled person falls to the side, it is usually towards the strongest side, as the weaker side is unable to counter the fall. In order to avoid the tendency to fall the disabled person himself or his care provider ‘hikes’ the pelvis upwards on the stronger side. This throws the trunk to the opposite side. The muscles of the stronger side can now be used to maintain balance. Stability is further assisted when the arm on the weaker side is used to prop on the armrest. The imposed curves within the spine put the ligaments on the convex side on stretch, reducing effort. As a result of this strategy, overall height has been reduced and a stable posture secured, but there is always a trade-off. In this case it is as follows:

• Tilting the pelvis laterally reduces the base area

with increase in pressure under the lower side of the pelvis, predisposing to tissue damage. • Rotation within the spine accompanies the lateral flexion (Koreska et al 1977), inducing a scoliotic curve. Over time the curves of the scoliosis increase in magnitude as a result of the unfavourable mechanics; the greater the curvature the greater the force (moment) operating about the point of maximum curvature. A typical asymmetrical sitting posture is adopted by people with some ability, for example in CP (Fig. 2.13). In this configuration the relatively large trunk is balanced over a small base area, that is, one ischial ramus! The superimposed triangle in Figure 2.13 highlights the mechanical difficulty in balancing such a structure. As balance is precarious the person lowers himself by tilting his pelvis backwards and flexing his spine. Lateral stability is secured using the upper limbs to balance, while antero-posterior stability is achieved by a delicate balance of body weight behind and in front of the line of gravity (note the extended legs). The weight of one leg crossed over the other aids stability and resists the tendency to slide forwards. It is clear that functional use of the limbs under these conditions is not possible, establishing the priority of postural stability over functional ability. Functional use of the upper limbs can be facilitated only by first securing base stability, thus freeing them from their postural role. Another typical posture which has been observed

Figure 2.13 A stable configuration.

in the disabled person following severe brain damage but not exclusive to that condition, occurs when recovery of movement is predominantly on one side (Fig. 2.14). The following sequence of development is suggested. The disabled person is placed symmetrically in a seated posture. Any movement occurring on one side of the body, whether voluntary or involuntary, will create a disturbance of equilibrium towards the side of the movement. Once the disturbance has occurred the trunk will fall further to the ipsilateral side, as there is no resistance from the contralateral side to counter the fall. When the fall is complete, i.e., when the ligaments on the contralateral side prevent further fall, the ipsilateral muscles can again contract. The essential point here lies in recognizing that the problem is not one of the muscles pulling down on the ipsilateral side but the lack of muscle action on the contralateral side. Muscles are unable to contract when unopposed in the line of gravity, they must have at least one fixed point about which to contract.


The arching extended posture demonstrated in Figure 2.15 is quite frequently found in people with severe quadriplegic CP and is the seated version of the supine lying posture illustrated in Figure 2.9. These are the so-called ‘pushers’ or ‘extenders’ that are so difficult to support once the action becomes established. In these cases, when the disabled person is asked to perform any activity, for example sit back in the seat, instead of flexing forwards, the person extends the spine, pushing with the head, shoulders and feet. The extension is often accompanied by a twisting within the trunk. The result is the opposite of that intended, the hips now being further forward on the seat. As this is a voluntary response to a request, albeit ineffective, it cannot be labelled ‘spasm’ or ‘extensor spasticity’. The real problem lies in the inability to ‘fix’ the pelvis, that is, secure a fulcrum about which to flex the body forwards. Flexion is the

action critical to being able to sit back in the seat and indeed for most functional activity. This same action, i.e. extension, often with rotation of the body, is used when attempting other activities or even to express any type of emotion in lying, sitting or standing. It indicates seriously undeveloped postural control, with utilization of innate reflexes, in attempts to function and suggests that the normal process of caudocephalic development of postural control (p. 25) has not progressed in the usual manner. In consequence, any movement is forced to develop around an inappropriate base. As this is often the individual’s only, or main, means of expression, it is the harder to deal with. Obviously the earlier the intervention the more likely it is to be successful. When the extensor pattern of motor behaviour is well entrenched, careful consideration must be given before any attempt to change it.

a)

b)

Figure 2.14 Although this man can be placed symmetrically in his seat any movement on his more functional left side disturbs his equilibrium (a, b1). He then falls to the side of the movement in a manner similar to cutting a guy rope holding a mast (b2). Further movement is then possible when one body segment rests on another segment and serves to compound the asymmetry. a

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Figure 2.15 A typical extensor behaviour used as a means of expression in severe cerebral palsy.

In standing The posture seen in Figure 2.16 is a familiar one adopted by people with insufficient strength in the antigravity muscles to stabilize the body structure in standing. The strategy used indicates that weakness rather than any abnormal neural activity is responsible for the posture, a view endorsed by many, e.g. Carr & Shepherd (2003), Damiano et al (2002). It may be analysed as follows. The young child featured in Figure 2.16(a) is attempting to stand. It is apparent that she is

a

Figure 2.16 The child with contractures of the tendo–achilles (TA) attempts to stand, gaining stability (a), by flexing hips and knees, locking knees together and splaying her feet.

standing on tiptoe as she has shortening of the tendo–achilles. This places her CG even higher than it would usually be, and her base of support is very small, both of which add to her


b

Figure 2.16 (Cont’d) In (b) the same child sits with knees apart indicating little or no contracture of the adductors. In (c) post TA and hamstring lengthening the underlying weakness of hips and knees is evident as the child clings to the support.

balance difficulty. She attempts to overcome her difficulty by:

• Flexing hips and knees, thus lowering her CG. • Stabilizing hip and knee joints by supporting one

against the other in adduction and internal rotation, which creates a stable configuration in the frontal plane. • Adducting the knees in this way splays the feet creating a wider base of support. Thus lateral stability is achieved but anteroposterior stability remains precarious. Under these conditions the individual is unable to move. The situation is improved by use of support such as a walking frame, the added stability facilitating limited movement. In Figure 2.16(b) the same child is sitting with legs abducted demonstrating that tight or ‘spastic’

c

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a

b

Figure 2.17 In (a) the young man uses the same strategy to balance as the child in Figure 2.16a. In (b) he is seen in high kneeling with knees abducted.

adductor muscles are not the reason for her standing posture. In addition, use of gaiters and ankle foot orthoses allows the child to stand with legs abducted. Inevitably continued use of the posture in Figure 2.16(a) will result in a shortening of the adductors and hamstrings. Following tendo–achilles and hamstring lengthening, (Fig. 2.16(c)) the underlying weakness at hips and knees is evident as the child is unable to stand without clinging very tightly to the support. The gait pattern in ambulant people with motor disorders should not be considered pathological but more a highly adapted compensatory strategy that achieves as near normal efficiency as is possible given the primary deficits. In Figure 2.17(a) the young man adopts a similar posture to that of the young child in Figure 2.16(a)

with hips and knees flexed, knees adducted and feet splayed, in spite of previous adductor/hamstring and tendo-achilles lengthening. It is apparent that his balance is precarious as he uses his arms to maintain equilibrium. The addition of elbow crutches increases his antero-posterior stability and enables him to walk. In Figure 2.17(b) the young man is seen in high kneeling with knees abducted, therefore tight adductors are not the problem! In Figure 2.17(c) he is shown in the hydrotherapy pool with gaiters, standing with legs wide apart. In fact he is able to walk unaided in the pool, which strongly suggests that weakness is at the root of his problem on land. With the gaiters removed he is still able to stand and walk unaided and with his knees apart, although less so than with gaiters. For more detail of these cases refer to Pope (1993).

Summary

c

Figure 2.17 (Cont’d) In (c) walking in the pool with gaiters he is able to walk with knees apart.

If the interpretation of the development of the postures seen in Figures 2.16 and 2.17 is correct then the muscle shortening is more the consequence than the cause of the postures adopted, in which case surgery to relieve the contractures may not resolve the problem and indeed may make it worse (Ch. 8).

SUMMARY In summary, the balance strategies used by nondisabled and disabled people have been interpreted and discussed. This can give insight into the reasons

why these postures are adopted and indicate what action might be required to improve the situation. No less important, interpretation in this way highlights the limitations of any intervention, emphasizing the need for very careful consideration of all the circumstances relating to a given individual, especially where function may be affected. If a particular posture is used to facilitate feeding, for example, intervention designed to give more support may impede that function. As will be seen throughout this book, it is generally not acceptable to sacrifice function for a ‘normal’ postural alignment.

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REFERENCES Alexandrov A, Frolov A, Massion J 1998 Axial synergies during human upper trunk bending. Experimental Brain Research 118(2): 210–220 Bressan ES, Woollocot MH 1982 A prescriptive paradigm of sequencing instruction in physical education. Human Movement Science 1: 155–175 Brogen E, Hadders-Algra M, Forssberg H 1996 Postural control in children with spastic diplegia: Muscle activity during perturbations in sitting. Developmental Medicine and Child Neurology 38: 379–388 Carr J, Shepherd R 2003 The adaptive system: plasticity and recovery. In: Neurological rehabilitation, 7th edn. Butterworth-Heinemann, Edinburgh, p 3–23 Contreras VJL, Grossberg S, Bullock D 1997 A neural model of cerebellar learning for arm movement control: cortico-spino-cerebellar dynamics. Learning and Memory 3(6): 475–502 Crow JL, Haas BM 2001 The neural control of human movement. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 69–84 Damiano D, Dodd K, Taylor N 2002 Should we be testing and training muscle strength in cerebral palsy? Developmental Medicine and Child Neurology 44: 68–72 Dault MC, Geurts AC, Mulder T, Duysens J 2001 Postural control and cognitive task performance in healthy participants while balancing on different support surface configurations. Gait Posture 14(3): 248–255 Debarere F, Wenderoth N, Sunaert S, Van–Hecke P, Swinnen SP 2004 Changes in brain activation during the acquisition of a new bimanual coordination task. Neuropsychologia 42(7): 855–867 Defebvre L, Kemoun G 2001 Gait disorders in Parkinson’s disease. Neuroanatomic and physiologic organisation of gait. La Presse Médicale 10 30(9): 445–451 de Visser E, Veth RPH, Schreuder HWB et al 2003 Reorganisation of gait after limb saving surgery of the lower limb. American Journal of Physical Medicine and Rehabilitation 82(11): 825–831 Donker SF, Mulder T, Nienhuis B et al 2002 Adaptations in arm movements for added mass to wrist or ankle during walking. Experimental Brain Research 146(1): 26–31 Edelman GM 1993 Neural Darwinism: selection and re-entrant signalling in higher brain function. Neuron 10(2): 115–125 Edwards S (ed) 2002 Neurological physiotherapy, 2nd edn. Churchill Livingstone, Edinburgh Galea M 2004 Neural plasticity and learning: The potential for change. In: Scrutton D, Damiano D, Mayston M (eds) Management of the motor disorders of children with cerebral palsy. McKeith Press, London, p 67–84 Gessell A, Ilg FL, Ames LB 1974 Infant and child in the culture of today (revised edn.) Harper and Row, New York Grillner S, Deliagina T, Ekeberg O 1995 Neural networks that co-ordinate locomotion and body orientation in lamprey. Trends in Neurosciences 18(6): 270–279

Grimm RJ 1983 Program disorders of movement. In: Desmedt JE (ed) Motor control mechanisms in health and disease. Raven Press, New York, p 1–11 Gurfinkel VS, Levik YuS, Popov KE et al 1988 Body scheme in the control of postural activity. In: Gurfinkel VS, Ioffe ME, Massion J et al (eds) Stance and motion: facts and concepts. Plenum, New York, p 185–193 Gurfinkel VS, Lestienne F, Levik YuS et al 1993 Egocentric reference frame and spatial orientation in microgravity: II. Body centred coordinates in the task of drawing elipses with prescribed orientation. Experimental Brain Research 95: 343–348 Hadders-Algra M 2000 The neuronal group selection theory: promising principles for understanding and treating developmental disorders. Developmental Medicine and Child Neurology 42: 707–715 Haggard P, Cockburn J 1998 Concurrent performance of cognitive and motor tasks in neuro–rehabilitation. Neuropsychological Rehabilitation 8(2): 155–170 Hesse S, Werner C 2003 Post stroke motor dysfunction and spasticity: novel pharmacological and physical treatment strategies. CNS Drugs 17(15): 1093–1107 Higgins S 1991 Motor control acquisition. Physical Therapy 71(2): 123–129 Hochstenbach J, Mulder T 1999 Neuropsychology and the relearning of motor skills following stroke. International Journal of Rehabilitation Research 22(1): 11–19 Howe T, Oldham J 2001 Posture and balance. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 225–239 Hubel DH, Wiesel TN 1963 Single cell responses in striate cortex of kittens deprived of vision in one eye. Journal of Neurophysiology 26: 1003–1017 Ingram HA, van Donkelaar P, Cole J et al 2000 The role of proprioception and attention in a visuomotor adaptation task. Experimental Brain Research 132: 114–126 Jackson P, Lafleur M, Malouin F et al 2003 Functional cerebral reorganisation following motor sequence learning through mental practice with motor imagery. Neuroimage 20: 1171–1180 Jeka J, Oie KS, Kiemel T 2000 Multisensory information for human postural control: integrating touch and vision. Experimental Brain Research 134: 107–125 Karni A. Meyer G, Rey-Hipolito C et al 1998 The acquisition of skilled motor performance: Fast and slow experience driven changes in the primary motor cortex. Proceedings, National Academy of Science, USA Kidd G, Lawes N, Musa I 1992 Understanding neuromuscular plasticity. Edward Arnold, London Kleim JA, Hogg TM, VandenBerg PM et al 2004 Cortical synaptogenesis and motor map reorganisation occur during late, but not early, phase of motor skill learning. Journal of Neuroscience 24(3): 628–633 Koreska J, Robertson D, Mills RH et al 1977 Biomechanics of the lumbar spine and its clinical significance. Orthopaedic Clinics of North America 8(1): 121–133

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Latash ML, Anson JG 1996 What are normal movements in atypical populations? Behavioural and Brain Science 19: 55–106 Lebeer J 1998 How much brain does a mind need? Scientific, clinical, and educational implications of ecological spasticity. Developmental Medicine and Child Neurology 40: 352–357 Lee WA, Michaels CF, Pal YC 1990 The organisation of torque and EMG activity during bilateral hand pulls by standing humans. Experimental Brain Research 82: 304–314 MacPherson JM 1991 How flexible are muscle synergies? Humphrey HDR, Freund HJ (eds) In: Motor control: Concepts and issues. John Wiley, Chichester, p 33–47 Maekawa K, Soeda A, Yokoi S et al 1986 Pedoscope studies on neonatal activity and center of gravity after delivery. Brain and Development 8: 37–46 Maekawa K, Soeda A, Yamada N et al 1987a The gravity center of children in supine and upright position. Jikeikai Medical Journal 34: 383–391 Maekawa K, Soeda A, Yamada N et al 1987b The preference hand and supporting foot in children. Jikeikai Medical Journal 34: 543–554 Massion J 1992 Movement, posture and equilibrium: Interaction and coordination. Progress in Neurobiology 38: 35–56 Massion J 1998 Postural control systems in developmental perspective. Neuroscience and Biobehaviour Review 22(4): 465–472 Massion J, Gahery Y 1978 Reflex control of posture and movement. Proceedings of IBRO Conference, Pisa, Italy. Progress in Brain Research 50: 219–226 Massion J, Amblard B, Assaiante C et al 1998 Body orientation and control of coordinated movements in microgravity. Brain Research Reviews 28(1–2): 83–91 Massion J, Ioffe M, Schmitz C et al 1999 Acquisition of anticipatory postural adjustments in a bimanual load lifting task: normal and pathological aspects. Experimental Brain Research. 128(1–2): 229–235 Mulder T, Hochstenbach J 2001 Adaptability and flexibility of the human motor system: implications for neurological rehabilitation. Neural Plasticity 8(1–2): 131–140 Mulder T, Zijlstra W, Geurts A 2002 Assessment of motor recovery and decline. Gait and Posture 16(2): 198–210 Mulder T, Zijlstra S, Zijlstra W et al 2004 The role of motor imagery in learning a totally novel movement. Experimental Brain Research 154(2): 211–217 Okamoto T, Okamoto K, Andrew PD 2001 Electromyographic study of newborn stepping in neonates and young infants. Electromyography and Clinical Neurophysiology 41(5): 289–296 Patron J, Stapeley P, Pozzo T 2002 Evidence of short term adaptation to microgravity of neuromuscular synergy during a whole body movement. Journal of Gravitational Physiology 9(1): 167–168 Paulsson K 1995 ‘They say I look more normal with artificial legs’ – Children’s needs versus society demands. ISBN 91–7153–3176 ISSN 1104–1625 number 73

Personius KE, Balice-Gordon RJ 2002 Activity dependent synaptic plasticity: insights from neuromuscular junctions. Neuroscientist 8(5): 414–422 Peterka RJ, Loughlin PJ 2004 Dynamic regulation of sensorimotor integration in human postural control. Journal of Neurophysiology 91(1): 410–423 Phillips N 2001 Motor learning. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 129–142 Pope PM 1985 A study of postural instability in relation to posture in the wheelchair. Physiotherapy 71(3): 127–129 Pope PM 1993 Case histories and terminology. Booklet No. 6, published by the Hare Association of Physical Ability Pope PM 2002 Posture management and special seating. In: Edwards S (ed) Neurological physiotherapy. Churchill Livingstone, Edinburgh, p 189–218 Pountney T, Mulcahy C, Green E 1990 Early development of postural control. Physiotherapy 76(12): 799–802 Roby BA, Feydy A, Combeaud M et al 2003 Motor compensation and recovery for reaching in stroke patients. Acta Neurologica Scandinavica 107(5): 369–381 Rothwell JC 2004 Motor control. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 3–20 Shumway–Cook A 1992 Role of the vestibular system in motor development: theoretical and clinical issues. In: Forssberg H, Hirschfield H (eds) Motor disorders in children. Karger, Basel, p 209–216 Shumway–Cook A, Hutchinson S, Kartin D et al 2003 Effect of balance training on recovery of stability in children with cerebral palsy 45(9): 591–602 Sisto SA, Forrest GF, Glendinning D 2002 Virtual reality applications for motor rehabilitation after stroke. Topics in Stroke Rehabilitation 8(4): 11–23 Steindle R, Ulmer H, Scholtz AW 2004 Developmental processes on posture control in children. Influence of proprioceptive, visual and vestibular afferences. HNO 52(5) 423–430 Thelen E 1983 Learning to walk is still an ‘old’ problem: a reply to Zelazo (1983) Journal of Motor Behaviour 15(2): 139–161 Van de Fits IB, Hadders-Algra M 1998 The development of postural response patterns during reaching in healthy infants. Neuroscience and Biobehavioral Reviews 22: 521–526 Vernazza-Martin S, Martin N, Massion J 2000 Kinematic synergy adaptation to microgravity during forward trunk movement. Journal of Neurophysiology 83(1): 453–464 Von Baumgarten RJ, Thumler R 1979 A model for vestibular function in altered gravitational states. Life Science and Space Research 17: 161–170 Vrbova G, Navarrete R, Lowrie M 1985 Matching of muscle properties and motorneurone firing patterns during early stages of development. Journal of Experimental Biology 115: 113–123 Walker MP, Brakefield T, Seidman J et al 2003 Sleep and the

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time course of motor skill learning. Learning and Memory 10(4): 275–284 Whitman A 1924 Postural deformities in children. New York State Journal of Medicine 24: 871–874 Woollacot MH, Assaiante C, Amblard B 1996 Development of balance and gait control. In: Bronstein M, Brandt T, Woollacot MH (eds) Clinical disorders of balance, posture and gait. Arnold, London, p 41–63

Wu Q, Swain R 2002 A mathematical model of the stability control of human thorax and pelvis movements during walking. Computer Methods in Biomechanics and Biomedical Engineering 5(1): 67–74 Zacharkow DJ 1988 Posture sitting and standing: chair design and exercise. Charles C Thomas, Springfield, Illinois

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Chapter

Secondary complications

INTRODUCTION CHAPTER CONTENTS Introduction Tissue adaptation and contracture Development 48 A preferred posture and its development 49 The development of tissue adaptation Tissue adaptation and compensatory balance strategies 52 Minimizing tissue adaptation Tissue damage Tears

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Fractures

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Pressure ulcers Osteoporosis Infections

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Respiratory infections Urinary tract infection Constipation

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Heterotopic ossification References

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Pain and discomfort Summary

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Secondary complications are defined as those that arise from the motor and postural deficit, i.e. the disability, and are not, in the main, the direct manifestation of the pathological impairment. More precisely, these complications are largely the result of the inability to move, to stabilize posture and to change position. The occurrence of secondary complications is the cause of much additional suffering in people with severe and complex pathologies, with a concomitant adverse effect on quality of life. It is increasingly recognized that in those people with ongoing conditions the focus of attention should be on minimizing associated complications (Edwards 2004, Mayston 2001, Pope 1992, Rimmer 1999). In Chapter 2 the most frequently encountered postures adopted by people with a motor and postural deficit were analysed, interpreted and discussed. Some of those postures are similar to those adopted by the non-disabled person, while others are specific compensatory strategies to gain balance and stability in order to function. Why then should we be concerned? Because persistent use of these postures damages the body system (p. 22). Evidence continues to accumulate that damage occurs when postures, imposed or adopted. are sustained over long periods of time; stressed tissues are not relieved and bodily functions such as digestion and respiration are compromised

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SECONDARY COMPLICATIONS

Immobility Imbalance Instability

Unequal loading

Functional inefficiency Infections Contracture deformity Osteoporosis Constipation HO

Pressure sores

Decreased QOL

Bedfast

Increased cost/ effort of care

Figure 3.1 Complications that arise from posture and movement deficit are shown. A lack of intervention leads to a bedfast state with worsening of the complications and increasing cost and effort of care.

(Bell & Watson 1985, Edwards 2004, Fulford & Brown 1976, Nyland et al 2000, Pope 1985). Figure 3.1 illustrates the complications that are likely to occur as a result of posture and movement deficit. This chapter focuses on those complications that are considered to be preventable or modifiable by overall physical management and treatment procedures. The complications are listed as follows:

• Contracture and deformity • Tissue damage • Osteoporosis • Infections: respiratory and urinary • Constipation • Pain and discomfort • Heterotopic ossification. The plight of people with severe and complex disability has been well documented in the past (Asher 1947, Thomson et al 1951). The inevitability of secondary or associated complications is considered axiomatic unless the appropriate action is taken to prevent or ameliorate their presence. Once present, they tend to be self-reinforcing when the conditions producing the problem persist, e.g. the prolonged use of a particular posture leading to a bedfast state together with poor quality of life and an increased effort and cost in the care load. Although there is much advocacy for the use of appropriate physical management procedures to prevent or relieve the secondary complications (e.g. Edwards & Charlton 2002, Pope 1988, 1992, 1997b, Pountney & Green 2004), there is still no clear evidence of the effectiveness of any particular intervention or the conditions under which these interventions are best applied.

TISSUE ADAPTATION AND CONTRACTURE DEVELOPMENT The prevention of contracture, or shortening in tissue length, is often the main focus of attention in managing the person with severe and complex disability. It is of particular concern in pathologies of sudden onset such as brain injury (BI), stroke and spinal cord injury (SCI), where contractures develop quickly unless the appropriate measures are taken to prevent or at least minimize them (Yarkony & Sahgal 1987). Before continuing, it is important to point out that a distinction is made between tissue adaptation and contracture as follows: Tissue adaptation is defined as the stage at which the tissues feel tight but a full range of movement is possible on slow passive stretch. Contracture is defined as the stage where the normal range is constrained by reduced length in the tissues and, in many cases, joint changes associated with immobility (Akeson et al 1987, Houlbrooke et al 1990). The sequence in the development of contracture and deformity is illustrated in Figure 3.2. A prolonged posture leads to tissue adaptation then to established contracture and, when no action is taken to prevent it, to eventual structural deformity. The tissues begin to adapt very quickly and tightness may be felt within a matter of days (Goldspink & Williams 1990, Kottke et al 1966, O’Dwyer et al 1989). This is not surprising when one considers that the tissues are in constant renewal, with remodelling corresponding to prevailing stress, or lack of stress, within the tissues.

Prolonged posture

Tissue adaptation

Contracture

Deformity

Figure 3.2 The sequence of deformity development is depicted in the diagram.

Tissue Adaptation and Contracture Development

While a prolonged postural attitude is seen as the primary cause of contracture development, other influences such as circulatory and nutritional disturbances in the tissues following immobilization may be implicated, as suggested by Soryal et al (1992) in cases of Guillain-Barré syndrome. Once contractures have developed, the limited range of movement (ROM) possible in a given area or joint constrains the ability to position the disabled person in an appropriate functional position, be it in lying, sitting or standing. Even relatively small limitations in ROM can be very disabling, such as the effect on gait when dorsiflexion of the foot is restricted, or the restriction on leaning forwards in sitting when hip flexion is reduced. But shortened tissues are not the only concern; for every shortened tissue there exists a lengthened tissue that also compromises postural and motor functioning. Overstretch of tissues, for example around joints, reduces the stability of those joints and predisposes to subluxation or dislocation in the region of greatest laxity. The dislocation of the adducted hip joint that correlates with deviation of the lower limbs to one side, so-called windsweeping (Pope 1997a, Porter 2004, Young et al 1998); the subluxation of the carpal bones observed in the severely flexed wrists in a number of motor disorders, are also instances of the effect of overstretched tissues. If the emphasis were placed on measures to relieve stress in tissues vulnerable to stretch rather than on measures to counter the tendency of the opposing tissues to shorten, the effect would be the same but this reversal of perspective might encourage a more encompassing approach to tissue adaptation.

A preferred posture and its development The term preferred posture was coined by Pope (Pope et al 1991) to describe an habitual posture, that is, one where the body returns to its original attitude after correction or change of position. The preferred posture in lying is reflected in sitting and in standing, indicating that the tissues have adapted physiologically to a greater or lesser degree. A vicious circle of positioning is then created that compounds the preferred posture. Such adaptation is not confined to the disabled person. It will affect the non-disabled person who

consistently undertakes an activity that involves an asymmetrical posture or movement, a point well recognized in sporting activities (e.g. Sahrmann 2002). In the 1980s, a survey was carried out, by the author, of the postural attitudes in a group of 36 nonambulant people with varying neurological pathologies, although the majority had multiple sclerosis (MS), who were living in residential care. It was observed that there were common features in the postural attitude irrespective of the pathology. This strongly suggested a significant gravitational influence in the development of the preferred postures observed. The common features of a preferred posture in the person with significant postural deficit are illustrated in Figure 3.3; these are:

• Rotation of the spine with twisting between trunk segments (a).

• Lateral bending of the trunk (b). • Deviation of the lower limbs, whether flexed or extended, relative to the pelvis (c).

• Adducted and generally flexed upper limbs (d). It was noted, that in many cases where the pelvis was tilted posteriorly in sitting, it became tilted anteriorly in supine lying. This apparent change is indicative of shortening in the hip flexor muscles. Further, though bilateral ROM at the knee was similar in the majority of cases, hip joint ROM differed between both sides confirming the particular asymmetry of the preferred posture in a given individual. Indeed when a preferred posture is not obvious it may be detected by the feel of the tissues on examination of trunk alignment and range of movement at the hip joint. In this survey of acquired pathologies no correlation was noted between the direction of the scoliotic curve and the direction of windsweeping. A survey of the postures in 25 adolescent and adult people with cerebral palsy (CP) who had never been functionally ambulant, revealed a similar attitude and consistency (Pope 1997a) (Fig. 3.4). In addition, the position of non-functional upper limbs was observed to be internally rotated when sitting and externally rotated in supine lying. However if the individual lay towards one side the ipsilateral upper limb was externally rotated while the contralateral limb was internally rotated, undoubtedly due

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d

b a

c

a)

b)

Figure 3.3 The diagram highlights the characteristic features of a ‘preferred posture’ shown in the photograph of a woman with MS: rotation between trunk segments (a), and bending of the trunk (b) and deviation of the lower limbs relative to the pelvis (c) and adducted arms (d).

a)

b)

Figure 3.4 The preferred posture of the young man with CP is highlighted diagrammatically and differs from Figure 3.3 in that the deviation of the lower limbs is to the same side as the concavity of the spine.


to the effect of gravity. A correlation was noted between the adducted leg and dislocation of the hip joint, an observation endorsed in recent work that studied the development of deformity in nonambulant children (Porter 2004) and in a previous study (Young et al 1998). In this survey of people with CP, a correlation was noted in the majority of cases, between the direction of windsweeping and the ipsilateral concavity of the trunk bend, i.e. the direction of the scoliotic curve. Porter (2004) found the same correlation in his study of the development of deformity in the severely disabled child. However, the evidence is equivocal as Letts et al (1984) and Young et al (1998) found the opposite correlation of windsweeping with trunk side bending in their population of CP children. Nevertheless, this author has continued to observe a relationship between ipsilateral trunk concavity and the direction of windsweeping in people with CP and no correlation between these two variables in people with MS and other acquired neurological pathologies. If in fact a difference between these two groups does exist, it is interesting to speculate on the reasons for the differences. In people with acquired pathologies, the direction of trunk bending and lower limb deviation may be determined by a number of influences, e.g., discomfort, asymmetry of function, musculoskelatal problems such as fractures that result from falls, individual preferences for sleeping, the positioning of the disabled person, or the involuntary muscle spasms experienced by people with MS, spinal cord injury (SCI) or traumatic brain injury (TBI). In the CP population, on the other hand, positional deformity has long been recognized (Bell & Watson 1985, Fulford & Brown 1976). More recently there is increasing evidence that the uterine conditions impose a posture on the fetus, which is observed in the neonate but is soon overcome in the healthy child (Hamanishi & Tanaka 1994, Porter 2004). It seems reasonable to hypothesize that in the child with severe motor impairment, unable to alter his position, fetal posture is retained and even reinforced as the child, being comfortable in that position, is upset when placed in an alternative position. Bernstein & Bernstein (1990) cite visual and vestibular disturbances as possible influences

on determining the side to which the spine bends in people with CP. Perhaps the most significant difference relating to the correlation of windsweeping with scoliotic concavity in the CP group observed by Pope (1997b), when compared with the mixed pathology group noted earlier, lies in the fact that the CP group had never been functionally ambulant. In those disabled people who develop, retain or recover a degree of postural and motor ability the attitude of the body, with corresponding adaptation of tissue, will be influenced, if not completely determined, by the postural and motor strategies that are used to balance and to function. A later pilot study (Pope et al 2000) compared supine lying postures in 10 non-ambulant people with MS with matched non-disabled people (age range 27–64, mean 47 years). In this small sample an established kyphotic upper trunk was found in the MS subjects irrespective of age. This finding was not surprising given that the subjects with MS were long-term wheelchair users. Whatever the initial influence that drives a particular postural configuration, it is then compounded by the forces of gravity and the reaction of the supporting surface, giving rise to the term the human sandwich coined by Hare (1987) (Fig. 3.5).

The development of tissue adaptation The plasticity of muscle tissue is well recognized and has been the subject of much investigation over many years (reviewed by Pette 2001). The structure of the muscle will adapt to the prevailing situation. Sustained stretch results in increase in sarcomeres, while immobility in a shortened position leads to decrease in sarcomeres. Recent work has attributed shortening of the gastocnemius muscle in children with CP, to reduced diameter of the muscle fibres (Shortland et al 2001). It is not only changes in muscle fibres and loss of elasticity in tendons that cause contractures but the proportional increase in interstitial connective tissue (Gardiner 1996, Williams & Goldspink 1984). These changes create the resistance and stiffness felt on attempting to move the particular body segment. The versatility and adaptability of the neuromuscular system is a feature that can be used to

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Bone renewal is a continuing process (Marchigiano 1997) with remodelling according to the particular forces acting on it. This has the effect of producing the structural deformities encountered in people with long-standing unmanaged conditions (see Fig. 1.11, Ch. 1). When considering measures to stretch or lengthen shortened tissues it is vital to remember that blood vessels and nerve tissue will also have undergone adaptation. Too sudden an increase in length is likely to reduce the lumen of the blood vessels with the effect of compromising the circulation in that area. Similarly overstretch of the nerve is likely to compromise conductivity and may result in paresis. These points are of particular relevance when attempting to reduce contractures through surgical intervention, a topic that is discussed in greater detail in Chapter 8. It must always be borne in mind that contracture development is a gradual process, therefore any intervention that rapidly increases tissue length runs the risk of circulatory and/or neural disturbance.

Tissue adaptation and compensatory balance strategies Figure 3.5

The ‘human sandwich’. (Based on Hare 1987).

advantage in the prevention of contractures and in the facilitation of function. Equally, without the appropriate input and advice this adaptability can result in deleterious changes as seen in the development of spasticity, contracture and deformity (Lawes 2004, O’Dwyer et al 1996) While focusing attention on the neuromuscular system, it must not be forgotten that other tissues, too, adapt to the prevailing circumstances. Immobility leads to deterioration and degeneration in joint structures as a result of the biomechanical and biochemical changes. Synovial joints require movement or loading to maintain healthy joint cartilage, synovium and the surrounding ligaments. Deprived of this stimulation adhesions occur, cartilage degenerates and ligaments become less stiff and weaker; collagen, glycoaminoglycans and water content of joint tissue are reduced (Akeson et al 1987, Houlbrooke et al 1990). Static postures and sustained loading predispose to intervertebral disc degeneration (Moore & Petty 2001)

Comprehensive assessment is the only means by which causes of contracture can be identified. Contractures resulting from compensatory balance and movement strategies must be distinguished from those arising from immobility alone. It is only then that the most appropriate measures to reduce the contracture may be taken without compromising function and, as a result, further disabling the person concerned. Where compensatory strategies are used to facilitate function in cases of postural and movement deficit, they are likely to involve muscles used within ranges differing from the normal. These muscles will adapt to maximize efficiency under the prevailing circumstances (O’Dwyer et al 1989). The maximum tension produced by a muscle contraction is achieved at mid-position of its normal working range, where fibre length is optimal for tensile force production (Newham & AinscoughPotts 2001). Thus when muscles are made to work consistently within ranges differing from those found in the non-disabled person, the muscle fibre length will adjust by adding or subtracting


sarcomeres, the contractile element of muscle tissue, to ensure that optimum force is produced within the current working range. As a result of this adaptation the muscle and its surrounding tissues will be longer or shorter when compared with the normal. It is therefore critical to identify correct cause and effect when making a judgement about contracture and considering interventions to relieve it. For example the child with CP in Figure 2.16(a) (Ch. 2), locks the knees together to gain stability while attempting to stand, with eventual shortening of the adductors (Pope 1993). Surgical lengthening of the adductors may do little, if anything, to alter the posture but more importantly it may interfere with the ability to stand.

Minimizing tissue adaptation By far the best method of dealing with tissue adaptation or contracture lies in minimizing development in the first place. This is achieved largely by an ongoing regime of physical management that includes control of posture and position throughout 24 hours, in combination, where indicated, with medication (Ch. 10). Unfortunately circumstances usually exist that prevent achievement of this ideal in many cases. Nevertheless, adherence to a basic regime is usually sufficient to reduce the magnitude of the resultant contracture. In severe and complex disability it is consistency of input rather than intermittent periods of intensive therapy that seems to be important (Pope 1997b). Such a regime can, even in long-standing cases, achieve significant reduction in contracture (see Case study 1, Pope 1992) without resort to splinting. Positioning techniques may be used in combination with medication such as Baclofen or in conjunction with botulinum injections (see Ch. 8) where spasms or spasticity appear to be contributing to the development of contracture. Medication alone, without addressing the position of the patient, is unlikely to succeed in the long term, a view endorsed in a recent paper on the management of spasticity in MS (Thompson et al 2005). Where contractures have been reduced by whatever means, conservatively, e.g. splinting or surgically, e.g. tenotomy, ongoing management is essential if recurrence of contracture is to be prevented (Farmer & James 2001). This means that

control of position and passive range of movement are essential on a regular basis. Williams (1990) found that passive stretch for 30 minutes a day was sufficient to prevent loss of serial sarcomeres and connective tissue remodelling in intact rats, while Tardieu et al (1988) found that the gastrocnemius muscle in children with CP required 6 hours stretch a day to maintain range. In the more chronic conditions, such as MS, an ongoing regime of passive stretches performed 3 times a week combined with postural control in lying and sitting, together with regular standing, appears to maintain but not increase joint range (Pope 1997b, Pope et al 1991). Recurrence of the contracture is unlikely when recovered movement can be used to maintain the joint range.

Splinting There are a number of publications that detail splinting methods, materials and criteria for use (e.g. Edwards 2002, Association of Chartered Physiotherapists Interested in Neurology (ACPIN) 1998). The reader is referred to these for more information. There are, however, certain points that relate to splinting that, in the author’s opinion, deserve mention here. The use of splinting in the prevention or correction of contractures is commonplace. It is undoubtedly true that an increase in range of joint movement is possible in mild to moderate contracture on the prolonged (but preferably not sustained) application of splinting to stretch the tissues, but the problem lies in preventing a recurrence of the contracture. Although some researchers have found splinting to be effective in severe contractures (e.g Anderson et al 1988, Blanton et al 2002, Moseley 1997), in this author’s opinion the more severe contractures are best dealt with surgically, provided correction has a defined functional goal that will benefit the disabled person and/or those caring for him, and a postoperative regime is in place to prevent recurrence (see Ch. 8). The application of a force (splinting) against an opposing force (spasm/spasticity) should be avoided. Wherever splinting is used the posture

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Figure 3.6

A typical posture resulting from catastrophic brain injury.

should be brought under control first before constraint on the particular joint is applied. This means providing sufficient support to stabilize the posture in a relaxed position. For example, following traumatic brain injury, splinting to prevent or control plantarflexion contractures at the ankle joint is unlikely to succeed if the patient is presenting with opisthotonus, that is a posture of total extension (Fig. 3.6). The pathological postural attitude must be addressed first otherwise the application of splints will result in discomfort or pain and possible tissue damage, which will in turn exacerbate the opisthotonus (positioning techniques and equipment are dealt with in Ch. 6). In summary, tissues will adapt to the prevailing circumstances. In the severely disabled person, the use of prolonged postures and positions have a marked influence on the development of tissue adaptation. In order to avoid incorrect treatment the healthcare professional (HCP) must learn to differentiate between tissue adaptation resulting from compensatory strategies and contracture resulting from immobility and/or that driven by neurological phenomena such as spasm. Where individuals have limited options in relation to change of posture and position, development of a preferred posture is inevitable, unless active intervention is taken to relieve the stress on selected tissues, and to modify the effects of lack of stress on others, by regular and consistent change of position.

TISSUE DAMAGE As noted earlier in this chapter, activity is necessary to maintain healthy tissues. On this basis the tissues in the less mobile person are unlikely to be as viable

as those of the non-disabled person and are, therefore, extremely vulnerable to tissue damage. Soft tissue tears, fractures and pressure ulcers are examples of the most frequently encountered damage secondary to the original impairment occurring in the more severely disabled population. The tendency is to focus on pressure ulcers, when in fact the tissues are vulnerable to damage in other ways. Whatever the particular damage, the trigger is mechanical force, tension, compression, shear, bending or torsion, applied to the tissues beyond tolerance levels. In Chapter 1 the behaviour of tissues in response to an applied force was described, with bones and cartilage designed to resist compression while tendons and ligaments are designed to resist tension. Most tissues are vulnerable to damage when torsion (a combination of forces) is applied.

Tears Tears in tissue are the result of sudden or too great an application of a tensile force producing a break in the basic tissue elements. In practice, such damage is likely to occur as a result of routine handling procedures, for example during washing, dressing, adjusting or moving the position of the disabled person, perhaps using his arms or legs to do so (Soryal et al 1992). In these and similar situations when handling the disabled person, the joints may be very vulnerable to damage as the muscle action that usually protects the joint is weak or absent altogether. Shoulder pain is a frequent complaint of people who are unable to move themselves. It is suggested here that small tears in the soft tissues may be associated with handling procedures, not

Tissue Damage

necessarily gross mishandling, in conjunction with the increased vulnerability of the tissues in and surrounding the immobile joints (Akeson et al 1987). Tendons, like ligaments, weaken with lack of activity as the alignment of fibres becomes disorganized. Nevertheless, passive stretches are a vital component in any physical management regime and are safe to perform provided the visco-elastic property of the tissues is understood, i.e. the tissues are given time to stretch and the person performing the stretches is adequately trained (Ch.10).

Fractures Fractures are not unusual in people with postural and movement impairment, a frequent cause being falls when balance and stability is reduced, as is the case in many neurological conditions. Fractures may occur anywhere in these circumstances but frequent sites are the neck of the femur and in the upper limb, when the arm is used as a saving measure. Demineralization of bone (osteoporosis) is a major contributing factor in the aetiology of fractures in the largely non-ambulant population. As a consequence of non-weight bearing the bones become more vulnerable to damage. King et al (2003) reported a relatively high incidence of fractures in people with severe quadriplegic CP. There are, of course, pathological conditions such as osteogenesis imperfecta where the bone tissue is extremely brittle and highly vulnerable, even the slightest force causing a fracture.

Pressure ulcers In order to prevent pressure ulcers or to promote healing of ulcers that have already occurred, an understanding of the cause is fundamental. A great deal of research has gone into the aetiology of pressure ulcers, especially in the older person (e.g. Bader 2005, Ferguson-Pell 2005, Swaine 2005); into the assessment of risk; and into the treatment of the sores; yet recurrence rates (Kierney et al 1998) and annual treatment costs remain high. For comprehensive coverage of the topic of pressure ulcers the reader is referred to Bader & Oomens (2005). Prevention of pressure ulcers is a major concern in the management of disabled people as treatment

costs run into anything from £1–2 billion per annum (Bennett et al 2004). The term pressure ulcer is most frequently used to describe tissue damage caused by localized high pressure, that is pressure applied over a relatively small area for a prolonged period of time. In reality pressure is a misnomer as the aetiology of these ulcers is far more complex. Pressure is only one element in the causation of tissue damage; another is shear force. In addition there appear to be a number of contributing factors such as the pressure gradient between the loaded and unloaded tissue, the time for which pressure is applied, the rate and time allowed for reperfusion of the tissues and the vulnerability of the tissues to damage.

Pressure with shear The influence of shear in combination with pressure as a causative factor in pressure ulcer formation has long been recognized and confirmed by subsequent investigation (Bennett et al 1979, Defloor 1999). The risk of damage is said to increase by 50% over that where the tissues are subject to pressure alone (Fig. 3.7). Knowledge of the hazardous situation created by the combination of pressure and shear is not recent, yet clinical practice all too often still focuses only on pressure relief. Little consideration is given to the posture of the individual or to the position in which the disabled person is placed. As a result he may spend hours at a time on a pressure-relieving cushion or mattress while lying or sitting in a reclined posture, creating just the hazardous conditions noted above. These conditions predispose to sliding over the surface with risk of skin abrasion. More likely, the friction between the skin and the support prevents sliding, in which case the skin ‘sticks’ to the support surface and the skeleton moves forwards, with bending and buckling of the intermediate tissues (Fig. 3.8), which is often visible (Fig. 3.9). The tension and torsion produced in the intermediate tissues causes tearing and/or occlusion of blood vessels, thereby cutting off the supply of nutrients to these tissues with resultant breakdown. Muscle tissue, with a large blood supply, is particularly vulnerable to damage in this way, a necrotic area in the muscle will then track

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GRAVITY

GRAVITY

Reaction of supporting surface a)

Figure 3.7

a

Reaction of supporting surface b)

The combination of pressure and shear significantly increases the likelihood of tissue damage.

b

Figure 3.8 The woman in (a) is seen leaning backwards relative to the seat, increasing the shearing within the tissues, which combined with the pressure has resulted in pressure ulcers over the ischeal tuberosities (b).

Tissue Damage

a

Figure 3.10

A deep-seated sacral sore.

time for which it is applied. The tissues will tolerate significant high load provided the time for which it is applied is short or the area over which it is applied is large.

Pressure gradient b

Figure 3.9 Buckling of the tissues in the buttock region is clearly evident (a), when in the half lying position (b).

outwards. Such conditions are responsible for the deep-seated ulcers that are still prevalent in many elderly and motor impaired people (Fig. 3.10). More superficial ulcers involving the dermal and subdermal tissues occur in areas with little or no muscle covering as in the heel. It is precisely these hazardous conditions that are produced when the reverse side of a ‘sliding sheet’ is used to prevent the disabled person sliding down the bed or a seat. When used in this way the sheet increases the friction at the support interface without rectifying the underlying cause of sliding, i.e. a reclined posture. Although tissue damage may result from pressure without apparent shear, for example the heel resting on the bed, it is unlikely that shearing within the tissues can ever be eliminated completely (Defloor 1999).

Influence of area and time under load When calculating risk of damage, the area over which the force is applied is important, as is the

In addition, the steeper the pressure gradient, i.e. the pressure differences between adjacent areas, the greater the risk of damage. The deep-sea diver, who is under considerable pressure but does not experience tissue damage because pressure is uniformly distributed over the whole body surface, illustrates this point.

Rate and time for tissue reperfusion The rate at which pressure is relieved is another contributing factor to damage; the faster the relief, the greater the risk of tissue trauma (Bader 2005). This has implications for the rate at which alternating pressure relief mattresses operate. Time needed for reperfusion is another factor requiring consideration. Previously, ‘push-ups’ of a few seconds were encouraged for pressure relief when sitting. Recent work has shown that this time period does not allow sufficient reperfusion of the tissues. Longer periods of ‘push-up’ are usually not possible or practical. Leaning forwards is now recommended as the preferred method of pressure relief in people with SCI (Coggrave & Rose 2003). Leaning forwards has the added benefit of reducing shearing of the tissues by ensuring the weight of the trunk is centred over the seat base.

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Predisposing factors to pressure ulcer development While the damage itself is triggered by the mechanical conditions, predisposing factors are well recognized, as noted in the various scales used to estimate the risk of pressure ulcers discussed by McClement et al (1997). The main predisposing factors are:

Immobility Sustained forces are concentrated in a particular area when an individual is unable to change position. Garber et al (1982a) found localized high trochanteric pressures in their study of SCI subjects placed in the traditional side lying position, i.e. with upper leg flexed and supported forwards of the lower leg. Poor nutritional status The skin becomes thin, pale and often shiny. The skin of non-disabled people has been found to have a higher level of tolerance to pressure when compared with that of people with paraplegia (Defloor 1999). Poor circulation Where overall circulation is ‘sluggish’ as in diabetes, the tissues are deprived of nutrition and the skin may have a bluish tinge as well as being thin and pale. Body build Garber et al (1982b) found a relationship between body build and pressure distribution in a heterogeneous group of wheelchair users. The magnitude of localized pressures together with pressure gradients were higher in thin people than people of average or higher than average weight, thereby increasing the risk of damage in the thinner group. Sensory impairment Any reduction or absence in sensory awareness will, by definition, increase risk of damaged tissues unless the person himself or his care provider is trained to change position on a regular basis. Incontinence is a factor not only because the moisture macerates and weakens tissues but also the chemical constituents of urine and faecal material adversely affect them (Defloor 1999). Temperature at the interface – for every 1-degree rise in temperature the metabolic rate increases by 13% (Bader 2005). The higher the metabolic rate, the greater need for nutrition to the tissues. When the tissues at the interface are under pressure, the

blood supply is compromised and the increased nutritional need cannot be met, with the result that damage occurs. Bergstrom & Braden (1992) found this positive correlation between an increased body temperature with the development of pressure ulcers in a group of elderly people. Conversely a reduction in interface temperature reduces metabolic rate and in consequence the need for nutrients. This principle is applied by the author to prevent tissue breakdown. On discovery of a persistent angry looking red area, the surrounding tissues are massaged with an ice cube to produce an erythema, taking care not to encroach upon the damaged tissue. By this means the tissue temperature is cooled, the local metabolic rate is reduced but the circulation is increased. It is vital that only the surrounding tissues be cooled and not the red area as the damaged circulation in the red area is unable to increase in response to the cooling.

Contractures and deformity contribute to the risk of tissue damage in that it is sometimes more difficult to position the body in such a way as to spread the load over the largest possible area.

Prevention and management of pressure ulcers Prevention of pressure ulcers should be high on the list of priorities in all procedures connected with the physical management of the person with severe and complex disability. It is best achieved by addressing the posture and position of the disabled person at all times and in all places concentrating on reducing the shear and increasing the area of support (see Ch. 6). The prolonged use of a reclined posture should be avoided. In light of the fact that pressure ulcers have a complex causation, pressure mapping for the purpose of identifying localized high-pressure areas, as for example under the buttocks of the seated person, is at best only an indicator of potential risk. Assessment of the posture/position of the person in the bed or seat is always required in order to estimate the degree of shearing within the tissues. When damage to the tissues occurs, the forces producing the damage must be eliminated or at least reduced to tolerable levels. It seems an obvious

Osteoporosis

point, but in many situations the wound is dressed meticulously, perhaps with a variety of treatments, while the client continues to lie or sit in the same position and subject to the same mechanical conditions that produced the sore in the first place (Fig. 3.9). These situations may account for the high recurrence rate reported by Kierney et al (1998). Of equal importance is the need to identify the exact situation that caused the problem. For example, if damage has occurred largely as a result of posture in bed, there is little to be gained by keeping the patient in bed ‘while the sore heals’, and the same applies if the damage has occurred in the wheelchair. Further, there is little point in undergoing plastic surgery to resolve an intractable sore if the disabled person returns to the same conditions that produced the ulcer (Case History 2, Ch. 8). This is not only a waste of money; it is extremely distressing to the person himself and those involved with his care. Equally, a great deal of money is spent on special pressure-reducing mattresses and cushions that are not as effective as they could be because the precise cause of the particular ulcer or potential ulcer has not been identified and addressed, i.e. the posture and position of the person concerned. The contributing factors noted earlier must be incorporated into procedures, handling and equipment designed for pressure ulcer prevention. The clothing worn by the disabled person in the sitting posture, especially in the wheelchair, is a further and often forgotten point relevant to those involved with the provision of pressure-relieving cushions. For example, wearing tight jeans will negate most of the benefit to be gained by the provision of such a cushion; the material of the jeans constrains the buttock tissues, preventing conformity with the cushion. A similar situation arises if a stiff material such as a cotton or continence sheet is placed over the cushion, or the mattress cover is made of an unyielding material (Defloor 1999). Recent research suggests that continence pads result in higher localized interface pressures and there are indications that the fold of the continence pad, if not smoothed before it is put on the disabled person, further increases pressures (Bain et al 2005). In summary, tissues may be damaged in a variety of ways, particularly when tissue viability may be reduced. The aetiology is complex, especially in relation to pressure ulcers. The forces involved,

together with the conditions that are responsible for the damage and the factors that predispose to damage, have been highlighted. Knowledgeable and careful handling can reduce the frequency of these incidents, but it is perhaps unrealistic to believe that every episode of damage in people with the more severe and complex conditions can be prevented. While it is important to assess the risk factors in the prevention of pressure ulcers, pressure mapping alone is only an indicator of risk and the results should be interpreted with caution. It is therefore as important, if not more so, to focus on the posture and position of the disabled person, in particular with respect to reducing shear and distributing body weight over the largest possible area. Contributing and predisposing factors must also be considered.

OSTEOPOROSIS Osteoporosis is a well-recognized consequence of immobility, as well as being part of the ageing process, especially in postmenopausal women. There are exceptions, as in osteogenesis imperfecta, when the bone structure is pathological. Severely reduced bone mineral density contributes to the risk of fractures. King et al (2003) found a high incidence of fractures in non-ambulant people with CP, with fractures of the lower limbs being the most prevalent. The incidence of fracture was found to be increased in those who had had hip surgery, the suggestion being that the immobilization necessitated by the surgery increased vulnerability. Henderson et al (2005), in a longitudinal study, found that bone mineral density does not decrease over time but when compared with non-disabled children the overall effect is a reduction as a result of growth differences. As well as females of menopausal age, people with SCI (Eser 2004) and MS are examples of other groups in whom osteoporosis is a consideration, thereby increasing vulnerability to fracture. The sedentary lifestyle and steroids taken by many people with MS are considered to be contributing factors in the development of osteoporosis (ShartsHopko & Smeltzer 2004). Studies have shown that bones become osteoporotic even in non-disabled subjects who were confined to bed for a week (e.g. Fukuoka et al 1997).

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It is therefore reasonable to suggest that a reduced bone mass will feature in any group of people with limited ambulatory mobility. As such it has significant implications for the management of the non-ambulant disabled person. It is probably wise to assume that the bones will be osteoporotic in the population of people with severe disability. Careful handling is of the utmost importance, bearing in mind that shear force and torsion are not well tolerated by bone. Fractures can and do occur while moving and handling the disabled person, when carrying out washing and dressing activities, particularly when performing these activities in situations where stiffness and dystonic (uncoordinated stereotypical) movements are a feature of the condition. Not all fractures are realistically avoidable, but the incidence can be minimized. Caution must also apply to the performance of physical management procedures such as passive exercise and assisted standing (see p. 140). Fractures are not unknown when carrying out passive stretches. Caution is always advised when standing a person for the first time after many months of non-weight bearing, as may arise when (re)introducing a physical management regime to a person with MS or following brain injury. Graduated weight bearing is highly recommended in these circumstances. However, the presence of osteoporosis should not preclude the performance of these activities, provided that those carrying out the procedures are adequately trained in the performance of them and are aware of the risks involved.

INFECTIONS Respiratory infections Respiratory infection is commonly associated with severe and complex disability, not infrequently leading to pneumonia and death. There are a number of factors that predispose to infection and influence their frequency.

Reduced lung excursion Reduced lung function will be a feature in any condition involving weakness or paralysis of respiratory muscles which affect the ability to

breathe deeply. Secretions collect in the base of the lung, beyond the cilliary epithelial lining of the bronchioles. The disabled person is unaware of their existence until a change to a lying posture causes secretions to move into the bronchioles, stimulating a cough reflex. This sequence of events has important implications for the ongoing management of recurring respiratory infection (see Ch. 10, p. 236). The slumped posture adopted by many people with severe disability further reduces lung excursion as the thorax is compressed and the diaphragm is pushed upwards into the thoracic cavity (Fig. 3.11; Crosbie & Myles 1985, Hough 1984, Jenkins et al (1988). Chan & Heck (1999) found that appropriate support in a tilted seating position expanded the thorax and facilitated respiration in people with MS.

Aspiration The following situations predispose to aspiration:

Reduced cough reflex Although secretions or aspirated material may trigger the appropriate reflex response, in some cases the strength of the cough may not be sufficient to expel the material. Defective swallowing mechanism The disabled person may have difficulty in swallowing food or drink with the result that he is extremely vulnerable to aspiration (Finch 2005). In this case some of the material is likely to pass into the lungs where it becomes a source of infection, unless a sufficiently strong cough reflex exists to expel it. Posture Appropriate alignment of the head to the shoulder girdle is required to facilitate swallowing, i.e the head in midline with the chin tucked in. It is not uncommon to find that where people are unable to feed themselves, when being assisted to feed the head is raised and held by the care provider. Lifting the head extends the cervical spine and the ability to swallow is compromised, and so, incidentally, is speech. The position of the head in relation to the shoulder girdle is the critical factor in facilitating swallowing rather than the erect position of the body as a whole. Insistence on a so-called upright position of the seat while the occupant is anything but upright (Fig. 3.11b) creates just the situation that

Infections

a

Reflux following a meal This occurs when inadequate closure of the hiatus sphincter permits ingested material to flow back into the oesophagus. It is a frequent complication for people with CP and in other neurological pathologies. A similar situation usually accompanies percutaneous endoscopic gastrostomy (PEG) feeding, i.e directly into the stomach. The person fed in this way is very vulnerable to aspiration of reflux if allowed to lie flat following feeding. When lying, an angle of approximately 14 degrees raised at the head end is considered sufficient to prevent the problem in the majority of cases. While the risk of reflux should be minimized, the angle of inclination should be kept as low as possible in order to reduce the tendency to slide down the bed, a situation which increases shearing of the tissues and the difficulty in stabilizing trunk alignment. Physical management of the disabled person in relation to respiratory infections should focus on prevention rather than treatment of the problem, by addressing the predisposing factors listed above, in particular those relating to posture and position during and following meals (see also Ch. 6).

Urinary tract infection b

Figure 3.11 The slumped posture in bed (a) and in the wheelchair (b) compresses the thorax and pushes the diaphragm upwards, severely restricting lung excursion.

reduces the individual’s ability to swallow. Larnert & Ekberg (1995) found that the head position relative to the shoulder girdle, i.e. with chin tucked in combined with a tilted position of the seat, facilitated swallowing in children with CP. A stable but correctly aligned body posture is therefore a necessity at mealtimes (see p. 121).

Consistency of food Food with bits in it such as small pieces of meat, rice or peas is difficult to swallow. Pureeing the food is often advised. Liquids are more difficult to swallow than solids but thickening the liquid often helps.

Urinary tract infections are not uncommon in the non-disabled population, especially in women. In the severely disabled population malfunction of the bladder, incontinence and the measures used to manage incontinence increase the risk of infection. Predisposing factors to infections are:

Urine retention Retention of urine usually results from bladder malfunction, either weakness in the detrusor muscle reducing ability to expel the urine, or detrusor sphincter dyssynergia, lack of synchronism of muscle and sphincter that resists expulsion of urine. The abdominal muscles assist micturition as well as bowel evacuation. Weakness of these muscles may contribute to urine retention although lesions affecting the specific nerves involved are mainly responsible, such as occurs in SCI and MS.

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Catheterization This is a ready means by which infection may be introduced into the urinary tract unless great care is taken to prevent it. Strict adherence to sterile technique in changes of catheter is essential.

Insufficient fluid intake Sufficient fluid intake is essential to prevent concentration of urine and to maintain healthy functioning of the kidneys. The disabled person himself and those caring for him must be vigilant with respect to the intake of fluid on a daily basis. It is particularly important where incontinence is a problem as there is a tendency for the disabled person to drink less in the belief that the risk of ‘accidents’ will, therefore, be reduced (Norton 2004).

Constipation Hinds & Wald (1989) found a link between an overloaded bowel and exacerbation of bladder symptoms. As with respiratory tract infections, urinary tract infections (UTI) become the concern of the HCP managing the disabled person more in relation to the measures that should be taken to avoid infection than in the treatment of the infection when it occurs. These measures include regular change of position and use of the erect standing posture, encouraging mobility where possible, monitoring fluid intake and maintaining of a high standard of hygiene and cleanliness. Where urinary ‘urgency’ is a problem the HCP should try to ensure as easy and as rapid access to toilet facilities as is possible in the particular circumstances. Fear of ‘accidents’ and lack of adequate toileting facilities away from home is one of the main reasons given by people for staying at home.

CONSTIPATION Constipation is almost an accepted inevitability in people with severe and complex disability. While general immobility is a major contributor to the development of constipation, there is often reduced motility of the intestine associated with the

pathology itself. This sluggishness may be further exacerbated by medication taken to relieve various symptoms, such as muscle relaxants and analgesics (Norton 2004). The HCP and the care provider should be aware that the signs and symptoms of constipation impact on the disabled person’s overall wellbeing (Norton 2004), and may be manifest in the following ways:

• Exacerbation of positive features of neurological lesions, e.g. tremor, spasms.

• Headache and stomach ache. • General feeling of being unwell. • Loss of appetite. • Exacerbation of bladder symptoms. Constipation sometimes goes unrecognized, as some bowel action may be evident on a fairly regular basis. This is spurious diarrhoea or overflow, associated with an impacted bowel, a situation quite common in people with longstanding disability. An impacted bowel can often be detected by abdominal palpation. Specialist medical and/or nursing attention is usually required to resolve the problem but it is not always available. When laxatives and suppositories are used to assist in the management of constipation Norton (2004) suggests that rotating different laxatives may have a better result than using one type only. However, Norton also states that, in the main, ‘patients prefer constipation to (faecal) incontinence and may not comply with any suggestion that they perceive reduces continence’. It is important that the HCP is aware of this, as it is unlikely that such information would be readily volunteered. Although difficult to deal with, constipation need not be the inevitable consequence of immobility that it is often thought to be. It may be amenable to modification by diet changes of position, and regular standing. Abdominal massage is believed by some to be of assistance in these situations (Ernst 1999, Preece 2002). However, the subject and circumstances surrounding both bladder and bowel malfunction are sensitive topics and should be addressed by a specialist in the field wherever possible. Although not a topic covered in this book, the HCP must bear in mind the ‘significant social, psychological and economic implications’ that

Heterotopic Ossification

urinary and faecal incontinence have for the person concerned (Wollin et al 2005) and undoubtedly for those caring for him.

PAIN AND DISCOMFORT The distinction between pain and discomfort is somewhat arbitrary and is largely a matter of degree, but both are associated with severe and complex disability. Stiff and sometimes dislocated joints or minor damage to the tissues surrounding the joints may cause pain as a result of localized high pressure and shearing within the tissues in a person unable to change position. Spasms may be painful or uncomfortable in a number of neurological pathologies but are not always so. Positions adopted for too long and/or devices such as splints may be described as uncomfortable, more rarely painful. However, it is well recognized that if a piece of equipment or a procedure is found to be uncomfortable it is unlikely to be used. A night splint, for example, should hold the position of the foot comfortably; prone lying is recommended for the more elderly person or in any individual when the position causes discomfort/pain. Whenever pain and discomfort are manifest the cause must be investigated by careful examination. Many of the causes of pain and discomfort may be modified by addressing posture and support issues, for example, persistent pain in the hip joint or in the spine may be associated with the posture of the disabled person, either in bed or in the (wheel)chair. It is essential to bear in mind that not all pain is related to the primary pathology. The disabled person is just as vulnerable to other causes of pain such as cancer, appendicitis, etc. as the non-disabled person. All too often one hears the complaint that the pain was assumed to be due to the primary pathology even when the usual means of relieving such pain continues to be ineffective. A process of carefully directed questions will often identify the cause, when this is not immediately obvious. The following questions are useful in this respect:

• Where is the pain/discomfort? • How severe is it? (refer to assessment).

scale used in

• Do you have pain/discomfort (a) in bed and or

(b) in the (wheel)chair or in both? • How long is it before you feel the pain/ discomfort (in bed or chair)? • What relieves the pain/discomfort (if anything)? • What do you think exacerbates the pain/ discomfort? The answers to these questions provide the clues to the possibility or not of resolving the problem by appropriate physical means. For example, if the pain or discomfort occurs either in bed or in the chair (but not in both) the problem may be isolated to a particular situation. If however the pain is intolerable and nothing seems to relieve it, further investigation is indicated. Intractable pain may require referral to a pain clinic. It is difficult at times to find substantive evidence for the discomfort. It is sometimes more a problem of perception rather than a reality, e.g. a custom moulded seat that is made to accommodate a deformity. Such a conclusion, however, must be reached only after careful investigation, and with great caution. Rochman & Herbert (1999) report a general misinformation and misconception regarding pain in a survey of occupational and physical therapists’ attitudes to pain.

HETEROTOPIC OSSIFICATION Heterotopic ossification, (HO) (calcification of the soft tissues, predominantly those surrounding the large joints, shoulders, elbows, hips and knees, but not exclusively confined to these areas, is well known to occur in people who have experienced severe trauma, and following brain or spinal injury. It is less known to occur in non-traumatic and longstanding neurological lesions but has been observed by the author in the more severe forms of MS. In the latter case the occurrence of HO was discovered in X-rays taken for other reasons. In light of this it is possible that HO may be more widespread than was originally thought to be the case. The cause remains obscure. HO, however, correlates with immobility of at least a month, severe pathologies, especially those with additional trauma or even pressure ulcers, and burns (Flin et al 2002, Ring & Jupiter 2003).

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Animal experiments have shown that microtrauma and periarticular damage resulted from vigorous manipulation (Izumi 1983). This finding suggests that damage to the periosteum is quite possible if passive stretches are carried out too quickly or too forcibly. The vulnerability of joint tissues, especially in the absence of protective muscle contraction, has been mentioned earlier (p. 54). It is likely that the cause of HO is multi-factorial. The onset of HO is usually 1–4 months in those with traumatic pathologies. However the onset in those with non-traumatic pathologies is more difficult to determine as it is often undetected in the more generalized stiffness and reduced range of movement that may accompany these conditions. Whatever the cause, the problem created by this serious complication is limitation in joint range of movement with a corresponding constraint on recovery of function. When present to a significant degree, as in Figure 3.12 at the knee joint, it can be

severely disabling. Involvement at the shoulder, hip and knee increases the difficulty in carrying out personal care activities. The limitation in joint range may compromise ability to achieve a sitting and/or standing posture. HO is also recognized as a difficult problem to manage (Sarafis et al 1999). The success of surgical excision of the ectopic bone tissue is unpredictable as recurrence may occur (e.g Ippolito et al 1999a) and to a greater extent than before surgery. Surgery is generally undertaken when, for example, HO compromises recovery and/or function or when an individual cannot be placed in a sitting position. Successful cases have been reported (e.g Ippolito et al 1999b, Melamed et al 2002, Sarafis et al 1999) that attributed non-recurrence to use of continuous passive motion postoperatively. Medication has been tried and may help in some cases (Barnes & Ward 2000) and is usually given to help prevent recurrence postoperatively. On occasion the condition has been known to reduce or resolve by itself, especially if the disabled person has recovered some movement.

SUMMARY

Figure 3.12 Ossification of the soft tissues around the knee joint severely restricts movement.

In this chapter the many problems that occur secondarily to the original impairment have been discussed in relation to their physical management. These problems influence the ability of the disabled person to function to his maximum potential, cause additional suffering and are a major cause of reduction in quality of life. When severe, they may confine affected persons to bed. In addition, the development of secondary complications increases the cost and effort of care. Emphasis has been placed on understanding the causation of secondary complications and recognizing predisposing factors as a means of controlling occurrence. Some suggestions have been offered for treatment and ongoing management. In an ideal world, it might be possible to prevent these secondary problems. However, to do so would require commitment to a complete 24-hour management of the physical condition of the disabled person. In order to achieve this, a high degree of dedication and cooperation is required

References

of the disabled person himself and his care provider. This is often not feasible or practical and may in fact reduce a perceived quality of life.

However, given knowledgeable input from the HCP attending the disabled person many, if not all, of the complications may be alleviated.

REFERENCES Akeson WH, Amiel D, Abel MF et al 1987 Effects of immobilisation on joints. Clinical Orthopaedics and Related Research 219: 28–36 Anderson JP, Snow B, Dorey FJ et al 1988 Efficacy of soft splints in reducing severe knee flexion contractures. Developmental Medicine and Child Neurology 30: 502–508 Asher R 1947 The dangers of going to bed. British Medical Journal 12(13): 967–968 Association of Chartered Physiotherapists Interested in Neurology (ACPIN) 1998 Clinical practice guidelines on splinting adults with neurological dysfunction. Chartered Society of Physiotherapy, London Bader D 2005 Pressure relief–do all strategies guarantee restored tissue integrity? Presentation, International Conference on Posture and Wheeled Mobility, Exeter, April 11th–15th Bader D, Oomens CWJ 2005 Recent advances in pressure ulcer research. In: Romanelli M, Clark M, Cherry G et al (eds) Science: A practice of pressure ulcer management. Springerverlag, p 11–27 Bain D 2005 Pads and pressure: an investigation into the effects of absorbent pads on pressure distributive surfaces. Presentation, International Conference on Posture and Wheeled Mobility, Exeter, April 11th–15th Barnes MP, Ward AB 2000 Textbook of rehabilitation medicine. Oxford University Press, Oxford Bell E, Watson A 1985 The prevention of positional deformity in cerebral palsy. Physiotherapy Practice 1: 86–92 Bennett G, Dealey C, Posnett J 2004 The cost of pressure ulcers in the UK. Age and Ageing 33(3): 230–235 Bennett L, Kavner D, Lee B et al 1979 Shear versus pressure as causative factors in skin blood flow occlusion. Archives of Physical Medicine and Rehabilitation 60(7): 309–314 Bergstrom N, Braden B 1992 A prospective study of pressure sore risk among institutionalised elderly. Journal of the American Geriatrics Society 40(8): 747–758 Bernstein SM, Bernstein L 1990 Spinal deformity in the patient with cerebral palsy. Spine: State of the art reviews 4(1): 147–160 Blanton S, Grissom SP, Riolo L 2002 Use of a static adjustable ankle–foot orthosis following tibial nerve block to reduce plantar flexion contracture in an individual with brain injury. Physical Therapy 82(11): 1087–1097 Chan A, Heck CS 1999 The effects of tilting the seating position of a wheelchair on respiration, posture, fatigue, voice volume, and exertion outcomes in individuals with

advanced multiple sclerosis. Journal of Rehabilitation Outcomes Measurement 3(4): 1–14 Coggrave MJ, Rose LS 2003 A specialist seating assessment clinic: changing practice. Spinal Cord 41: 692–695 Crosbie WJ, Myles S 1985 An investigation into the effect of postural modification on some aspects of normal pulmonary function. Physiotherapy 71(7): 311–314 Defloor T 1999 The risk of pressure sores: a conceptual scheme. Journal of Clinical Nursing 8: 206–216 Edwards S, Charlton P 2002 Splinting and the use of orthoses in the management of patients with neurological disorders. In: Edwards S (ed) Neurological physiotherapy, 2nd edn. Harcourt Churchill Livingstone, Edinburgh, p 219–254 Edwards S 2004 Cerebral palsy in adult life. In: Scrutton D, Damiano D, Mayston M (eds) Management of motor disorders in children with cerebral palsy, 2nd edn. McKeith Press, London, p 170–182 Ernst E 1999 Abdominal massage therapy for chronic constipation: A systematic review of controlled clinical trials. Forsch Komplementarmed 6(3): 149–151 Eser P, Frotzler A, Zehnder Y et al 2004 Relationship between the duration of paralysis and bone structure: a QCT study of spinal cord injured individuals. Bone 34(5): 869–880 Farmer SE, James M 2001 Contractures and orthopaedic and neurological conditions: a review of causes and treatment. Disability and Rehabilitation 23(13): 549–558 Ferguson–Pell M, Herath B, Bloomer Z et al 2005 Capillary reperfusion–comparing response of posterior heel with greater trochanter. Presentation, International Conference on Posture and Wheeled Mobility, Exeter, 11th–15th April Finch H 2005 Nutrition and hydration for the vegetative state and minimally conscious state patient. Neuropsychological rehabilitation 15(3/4): 537–547 Flin C, Curalucci H, Duvocelle A et al 2002 Heterotopic ossification and brain injury. Annales de Réadaptation et de Médicine Physique 45(9): 517–520 Fukuoka H, Mishimura Y, Haruna M et al 1997 Effect of bed rest immobilisation on metabolic turnover of bone and bone mineral density. Journal of Gravitational Physiology 4(1): S75–81 Fulford GE, Brown JK 1976 Position as a cause of deformity in children with cerebral palsy. Developmental Medicine and Child Neurology 18: 305–314 Garber SL, Campion LJ, Thomas A et al 1982a Trochanteric pressure in spinal cord injury. Archives of Physical Medicine 63(11): 549–550 Garber SL, Krouskop TA 1982b Body build and its relationship to pressure distribution in the seated

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wheelchair patient. Archives of Physical Medicine 63(1): 17–20 Gardiner R 1996 The pathophysiology and clinical implications of neuromuscular changes following cerebrovascular accident. Australian Journal of Physiotherapy 42(2): 139–147 Goldspink G, Williams P 1990 Muscle fibre and connective tissue changes associated with use and disuse. In: Ada L, Canning C (eds) Key issues in neurological physiotherapy. Butterworth–Heinemann, Edinburgh, p 197–218 Hamanishi C, Tanaka S 1994 Turned head–adducted hip–truncal curvature syndrome. Archives of Disease in Childhood 70: 515–519 Hare N 1987 The Human Sandwich Factor. Congress presentation, Chartered Society of Physiotherapy, September, Oxford Henderson RC, Kairalla JA, Barrington JW 2005 Longitudinal changes in bone density in children and adolescents with moderate to severe cerebral palsy. Journal of Pediatrics 146: 769–775 Hinds J, Wald A 1989 Colonic and anorectal dysfunction associated with multiple sclerosis. American Journal of Gastroenterology 84(6): 587–595 Hough A 1984 The effect of posture on lung function. Physiotherapy 70(3): 101–104 Houlbrooke K, Vause K, Merilees MJ 1990 Effects of movement and weightbearing on the glycosaminoglycan content of sheep articular cartilage. Australian Physiotherapy 36(2): 88–91 Ippolito E, Formisano R, Caterini R et al 1999a Operative treatment of heterotopic hip ossification in patients with coma after brain injury. Clinical Orthopaedics and Related Research 365: 130–138 Ippolito E, Formisano R, Farsetti P et al 1999b Excision for the treatment of periarticular ossification of the knee in patients who have a traumatic brain injury. Journal of Bone and Joint Surgery 81(6): 783–789 Izumi K 1983 Study of ectopic bone formation in experimental spinal cord injured rabbits. Paraplegia 21: 351–363 Jenkins SC, Soutar SA, Moxham J 1988 The effects of posture on lung volumes in normal subjects and in patients pre and post coronary artery surgery. Physiotherapy 74(10): 492–496 Kierney PC, Engrave LH, Isik FF et al 1998 Results of 268 pressure sores in 158 patients managed jointly by plastic surgery and rehabilitation medicine. Plastic and Reconstructive Surgery 102(3): 765–772 King W, Levin R, Schmidt R et al 2003 Prevalence of reduced bone mass in children and adults with spastic quadriplegia. Developmental Medicine and Child Neurology 45: 12–16 Kottke FJ, Pauley DL, Ptak R 1966 The rationale for prolonged stretching for correction of shortened connective tissue. Archives of Physical Medicine and Rehabilitation 6: 345–352 Lawes N 2004 Neuroplasticity. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 57–72

Larnert G, Ekberg O 1995 Positioning improves the oral and pharyngeal swallowing function in children with cerebral palsy. Acta Paediatrica 84: 689–692 Letts M, Shapiro L, Mulder K et al 1984 The windblown hip syndrome in total body cerebral palsy. Journal of Pediatric Orthopedics 4: 55–62 McClement E, Henderson H, Phillips J 1997 Maintenance of tissue viability. In: Goodwill CJ, Chamberlain MA, Evans C (eds) Rehabilitation of the physically disabled adult, 2nd edn. Stanley Thomas (Publishers) Ltd, USA, p 509–525 Marchigiano G 1997 Osteoporosis: primary prevention and intervention strategies for women at risk. Home Care Provider 2(2): 76–81 Mayston M 2001 People with cerebral palsy: effects of and perspectives for therapy. Neural Plasticity 8(1–2): 51–69 Melamed E, Robinson D, Halperin N et al 2002 Brain injury heterotopic bone formation: treatment and results. American Journal of Physical Medicine and Rehabilitation 81(9): 670–674 Moore A, Petty NJ 2001 Function of the spine. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 203–224 Moseley AM 1997 The effect of casting combined with stretching on passive ankle dorsiflexion in adults with traumatic head injuries. Physical Therapy 77(3): 240–247 Newham DJ, Ainscough–Potts A–M 2001 Musculo–skeletal basis for movement. In Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 7–36 Norton C 2004 Bowel management in multiple sclerosis. Gastrointestinal Nursing 2(6): 31–35 Nyland J, Quigly P, Huang C et al 2000 Preserving transfer independence among individuals with spinal cord injury. Spinal Cord 38: 649–657 O’Dwyer NJ, Neilson PD, Nash J 1989 Mechanisms of muscle growth related to muscle contracture in cerebral palsy. Developmental Medicine and Child Neurology 31: 543–547 O’Dwyer NJ, Ada L, Neilson PD 1996 Spasticity and muscle contracture following stroke. Brain 119: 1737–1749 Pette D 2001 Historical perspectives: plasticity of mammalian skeletal muscle. Journal of Applied Physiology 90(3): 1119–1124 Pope PM 1985 A study of instability in relation to posture in the wheelchair. Physiotherapy 71: 127–131 Pope PM 1988 A model for evaluation of input in relation to outcome in severely brain damaged patients. Physiotherapy 74(12): 647–650 Pope PM, Bowes CE, Tudor M et al 1991 Surgery combined with continuing post–operative stretch for release of knee flexion contractures in cases of multiple sclerosis. Clinical Rehabilitation 5: 15–23 Pope PM 1992 Management of the physical condition in patients with chronic and severe neurological pathologies. Physiotherapy 78(12): 896–903 Pope PM 1993 Contracture: cause or effect of abnormal posture and gait in cerebral palsy? In: Case histories and terminology. Booklet No. 6, published by the Hare Association of Physical Ability

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Pope PM 1997a Evaluation of postures in non–ambulant adults with cerebral palsy. Presentation, Dundee 97, 1st International Conference, Posture and Mobility Group, Dundee, Scotland, September 8th–12th Pope PM 1997b Management of the physical condition in people with chronic and severe neurological disabilities living in the community. Physiotherapy 83(3): 116–122 Pope PM, Ainsworth K, Wade D 2000 Control of position in supine lying: the effect on loading and posture in multiple sclerosis subjects with spasticity. Poster presentation, MS Conference, Harrogate, Yorks, November 12th–14th Porter D 2004 Doctoral thesis: Development of deformity in children with cerebral palsy. Dundee University, Scotland Pountney TE, Green EM 2004 In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 57–72 Preece J 2002 Introducing abdominal massage in palliative care for the relief of constipation. Complementary Therapy Nursing and Midwifery 8(2): 101–105 Rimmer JH 1999 Health promotion for people with disabilities: the emerging paradigm shift from disability prevention to prevention of secondary complications. Physical Therapy 79(5): 495–503 Ring D, Jupiter JB 2003 Operative release of complete ankylosis of the elbow due to heterotopic bone in patients without severe injury of the nervous system. Journal of Bone and Joint Surgery 85A(5): 849–857 Rochman DL, Herbert P 2000 Occupational and physical therapists knowledge and attitudes regarding pain: A survey. American Pain Society Bulletin 10(1): 6–11 Sahrmann S 2002 Diagnosis and treatment of motor imbalance syndome. Mosby, USA Sarafis KA, Karatzas GD, Yotis CL 1999 Ankylosed hip joints caused by heterotopic ossification after traumatic brain injury: a difficult problem. The Journal of Trauma 46(1): 104–109

Sharts–Hopko NC, Smeltzer S 2004 Perceptions of women with multiple sclerosis about osteoporosis follow–up. Journal of Neuroscience Nursing 36(4): 189–194 Shortland A, Harris C, Gough et al 2001 Architecture of the medial gastrocnemius in children with spastic diplegia. Developmental Medicine and Child Neurology 43: 796–801 Soryal I, Sinclair E, Hornby J et al 1992 Impaired joint mobility in Guillain–Barre syndrome: a primary or a secondary phenomenon? Journal of Neurology, Neurosurgery and Psychiatry 55: 1014–1017 Swaine J 2005 Pressure mapping: What it does and does not tell us. Presentation, International Conference on Posture and Wheeled Mobility, Exeter, 11th–15th April Tardieu C, Lespargot A, Tabary C et al 1988 For how long must the soleus muscle be stretched each day to prevent contracture? Developmental Medicine and Child Neurology 30: 3–10 Thomson AP, Lowe CR, McKeown T 1951 The care of the aged and chronic sick. E & S Livingston, London Thompson AJ, Jarrett L, Lockley L et al 2005 Clinical management of spasticity. Journal of Neurology, Neurosurgery and Psychiatry 76: 459–463 Williams PE 1990 Use of intermittent stretch in the prevention of serial sarcomere loss in immobilised muscle. Annals of the Rheumatic Diseases 49: 316–317 Williams PE, Goldspink G 1984 Connective tissue changes in immobilised muscle. Journal of Anatomy 138: 343–350 Wollin J, Bennie M, Leech C et al 2005 Multiple sclerosis and continence issues: an exploratory study. British Journal of Nursing 14(8): 439–446 Yarkony GM, Sahgal V 1987 Contractures: A major complication of craniocerebral trauma. Clinical Orthopaedics and Related Research 219: 93–96 Young NL, Wright JG, Lam TP et al 1998 Windswept hip deformity in spastic quadriplegic cerebral palsy. Pediatric Physical Therapy 10: 94–100

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Chapter

4

Central nervous system impairment: main effects on posture and movement

INTRODUCTION CHAPTER CONTENTS Introduction

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Upper motor neurone syndrome Negative features of UMNS

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Positive neurological features

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Mechanical versus physiological hypertonicity 73 Spasticity or compensatory/coping strategies? 74 Associated reactions or balance strategies? 74 Innate reflexes become volitional responses 74 Measurement of spasticity Subcortical lesions

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Basal ganglia lesions Cerebella lesions

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General management of CNS features Management of UMN lesions

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Management of subcortical lesions Summary References

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This chapter focuses on the posture and movement deficits that result from brain and spinal cord lesions and the implications for management with particular reference to people with the more severe and complex pathologies. The effects of central nervous system (CNS) lesions are often amenable to modification by appropriate management of the physical condition. While the focus in this chapter is on the features of neurological impairment that relate to posture and movement, it is important to remember that other body systems and cognitive function are affected in many cases, and certainly in the more severe or late stages of these conditions. Malfunction of the CNS affects posture and movement in a variety of ways depending on the particular area that is damaged or impaired. The effect of impairment is manifested in two ways, one being the loss or absence of a feature, e.g. paralysis following a stroke or alternatively, the release of a phenomenon that is normally inhibited when no impairment exists, e.g. the involuntary spasms frequently encountered in the person with multiple sclerosis (MS) or the rigidity and tremor in Parkinson’s disease. Thus impairment of the nervous system is divided into positive and negative features. For simplicity the topic is addressed by looking at the affect of impairment in particular areas of the CNS. In doing so it is essential to be aware that the CNS does not operate as a system of discrete parts,

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each with a particular function making up the whole package but as a highly integrated and sophisticated system that operates as a whole (Charlton 1994), a classic example of ‘the whole being more than the sum of the parts’ (Gestalt theory, Perls 1969). Damage in one area will influence the functioning of other areas. In addition, the ongoing adaptability and plasticity of the system to the demands made upon it, even in the damaged central areas of the neuromotor system, must always be borne in mind. This facility to adapt may be beneficial or deleterious (Lawes 2004), the adaptation depending, to some extent at least, on the postmorbid physical management of the condition. Not only is the system itself highly integrated but in many, particularly in severe pathologies, the lesions themselves are rarely discrete, with multiple areas being affected, e.g., in brain injury (BI) or in MS, damage is usually diffuse, affecting a number of differing areas. Thus the disabled person may present with a mixture of features that are difficult to classify. Such is the case when the disabled individual presents with a mixture of spasms, tremor and rigidity as is frequently the case in people with MS. It is probably wise, as advocated by Scrutton (1998), to concentrate less on the classification and treatment of the impairment and deal with the problem as it affects the disabled person. With these cautionary notes in mind the dominant features that affect the individual when a particular part of the CNS is impaired will be addressed.

Lesions to the UMN result in a variety of negative and positive features that have been categorized in this way for more than a century. They have been and continue to be the topic of much investigation since that time. It is not the purpose here to discuss in detail the mechanisms underlying the positive and negative manifestations of any impairment or the conclusions drawn from related research. There is a vast amount of literature on the subject to which the reader is referred (e.g Carr & Shepherd 2003). It is important, however, that the main points are outlined and in particular their relationship to and implications for the management of the more disabled person. It is equally if not more important, to try to unravel some of the confusion and misconceptions, both in terminology and in perceived cause of some features in a given condition, so that the treatment and/or management is directed more appropriately.

UPPER MOTOR NEURONE SYNDROME

• Recruitment of a sufficient number of motor

The upper motor neurone syndrome (UMNS) is the result of lesions that interfere with the function of the upper motor neurone (UMN) itself, its pathways and connections. Lesions may occur at different levels, in the cortex, in the tightly packed internal capsule, the brainstem or in the spinal cord. The most frequently encountered lesions affecting the UMN are cerebrovascular accidents (CVAs), commonly referred to as strokes, but lesions of the UMN may also result from BI, MS and many other pathologies that interfere with function in these areas of the brain and spinal cord.

• Stimulation frequency characteristics of motor

Negative features of UMNS The negative features are considered to be largely a manifestation of pyramidal tract impairment and are seen as muscle weakness, slowness of movement and lack of dexterity. This leads to areas of general and specific loss of function.

Weakness Weakness has been described as an inability to generate sufficient force and to sustain that force (Bourbonnais & Vanden Noven 1989). The force of a muscle contraction is dependent upon a number of factors: units.

unit discharge.

• Type of muscle. Alteration in any of these will influence the contraction of the muscle. An understanding of these points is critical to management of weakness. A motor unit is comprised of one motor neurone that activates a discrete number of muscle fibres. The number of muscle fibres innervated varies according to the action. In general, smaller numbers are

Upper Motor Neurone Syndrome

associated with fine movements while large numbers are associated with sustained contraction. Sufficient numbers of motor units must be activated for the muscle to contract. In addition the frequency of neuronal stimulation to the muscle must be sufficient to produce the tension and to sustain the contraction. Contraction occurs only when a certain threshold is reached at synaptic level. A single impulse of sufficient strength produces a contraction (twitch) of all the muscle fibres innervated by the neurone. When the frequency is increased to the level where one contraction is superimposed on another, the fibre does not have time to relax between stimuli, and the force of contraction increases until a sustained tetanic contraction is produced. Once this state is reached, further increase in frequency does not increase force (Newham & Ainscough-Potts 2001). A reduced firing rate therefore decreases the muscle tension produced which calls for additional motor unit recruitment, which in turn results in an increase in effort. The speed of contraction depends upon muscle fibre type which itself is dependent upon stimulation frequency. Fibre types range from slowacting Type I muscle fibres stimulated at low firing rates to fast-acting Type IIb muscle fibres stimulated by high firing rates. Type IIa fibres have characteristics of both and respond to a range of intermediate firing rates. Muscle fibres that are activated at high rates contract and relax rapidly with maximal tension, corresponding to a high rate of activity, while muscle fibres activated at slow firing rates contract and relax slowly. Smooth coordinated muscle contraction is dependent upon the orderly and sequential recruitment of the motor units. Small motorneurones that sustain their firing activating slow muscle fibres are recruited first, with incremental recruitment of the larger motorneurones that do not maintain their activity. (Further detail of muscle fibre characteristics, recruitment order and force production is given in Carr & Shepherd 2003, Newham & Ainscough-Potts 2001). It is evident that disturbances in the order and timing in which motor units are recruited will affect the smoothness and synchronicity of muscle

contraction and, as a result, functional movement as a whole. There is some evidence to suggest that disturbance in order and timing rather than cocontraction of agonist and antagonist causes the interference with movement, as Sahrmann & Norton (1977) found in the hemiplegic arm. Pyramidal tract innervation is predominantly concerned with phasic movements of the limbs driven by fast-acting muscle fibres (Rothwell 2004). In lesions affecting the pyramidal tract these muscle fibres have been shown to change type and become slow-acting muscle fibres (Dietz et al 1986; Edstrom 1970). They are therefore slow to achieve the required tension to produce a movement (Farmer et al 1993) and require greater effort. The result is a sluggish attempt to move the limb with a lack of dexterity and consequent loss of rapid, discrete movement (Carr & Shepherd 2003). This problem is further compounded by the changes in muscle structure with disuse, which has been the focus of much investigation by Goldspink & Williams (1990). The proportion of connective tissue to muscle tissue increases when held in a shortened position, thereby increasing the muscle stiffness and resistance to movement particularly in slow-acting muscles (Given et al 1995). Aubou-Salem & Ishikawa (2001) found structural change in rat muscle within hours of muscle inactivity, endorsing the early change noted by Goldspink & Williams (1990). In summary, the negative features of damage to the UMN are seen to contribute significantly to the disturbance in smooth coordinated muscle action with resultant weakness, slow and sluggish action and loss of dexterity evident following these lesions.

Positive neurological features Positive features are manifest in the spasms and spasticity that result from a lack of the inhibiting influences on lower motor neurone activity (LMN), rather than overactivity of these neurones; in essence they are release phenomena, but the intensity varies according to differing conditions. The mechanisms producing these phenomena are many and complex (Katz & Rymer 1989). Far more emphasis has been placed on the positive neurological features than on the negative

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features, both in research and more particularly in relation to treatments. It is likely that this has been so because the positive features are the more obvious. They have been perceived as the major problem encountered in rehabilitation, impeding and masking functional recovery and management of the severely disabled individuals who manifest such features. There is an increasing body of opinion, however, that believes the emphasis on the positive neurological features is misplaced and the features themselves can be misleading, diverting attention from the more important underlying problems, the negative features (e.g. Burke 1988, Carr & Shepherd 2003, Hare 1987, Pope 1992). By recognizing and addressing the negative features, the positive features may be controlled and minimized, if not prevented or abolished altogether. Classic definitions of positive features resulting from lesions in the nervous system exist in relevant textbooks, nevertheless confusion remains in classifying neurological release phenomena in general and those of the upper motor neurone syndrome in particular. Clinicians vary considerably in the criteria used to do so. In addition it is often the case that the features presenting in a given person do not neatly fall into the textbook definition, especially when the person presents with mixed features arising from diffuse damage. Positive features of UMN lesions result from disinhibition of the normal reflexes largely controlled by extrapyramidal activity, in particular that of the reticular system. Discrete lesions of the pyramidal tract produce little, if any, increased muscle tone (Burke 1988, Rothwell 2004). There are two categories of positive features: (1) Exaggerated proprioceptive reflexes manifest as follows: • Clasp knife reactions to passive stretch. • Exaggerated tendon jerks. • Clonus. (2) Cutaneous reflexes produce: • Flexor withdrawal and extensor reaction. • The Babinski response to stimulation of the sole of the foot, that is, extension instead of flexion of the big toe.

These clinical signs vary in intensity according to circumstance, e.g. they are exacerbated by anxiety and by infections (Hinderer & Dixon 2001, Norton 2004). In addition, they are not reliable indicators of treatment progress (Grimm 1983, Hare 1987) and most significantly, do not correlate with functional potential, that is, a reduction in the feature is not associated with increase in functional ability (e.g Childers et al 2004, Dietz 1992, Giulini 1992, Perry 1993). True positive features are the result of lesions that interfere with normal inhibition of a particular area of the UMN. So-called ‘abnormal’ activity is released and the muscles respond in characteristic ways that correspond to the site of the lesion, for example the waves of spasm that afflict the person with MS or the sudden extension or flexion of the lower limbs seen in people with severe BI or following SCI, or the clonus experienced on tendon stretch in a variety of conditions. Our understanding of this complex system may be helped by appreciating that it is the switching off, i.e. inhibition of unwanted neural activity, rather than the activitation or switching on of neural impulses, that gives shape to neural networks, permitting selection of discrete movement for functional activity. A useful if somewhat simplistic analogy may be made to the wiring of a house for electricity. The house, when connected to the mains supply is ‘alive’, i.e. the whole house is switched on. It is the numerous switches that turn the electricity off that permit effective use of the electrical current; the more switches there are, the greater the flexibility of use. Similarly, the switched on or alive state of the nervous system may be considered as the default mode; the switches that turn the system off, the inhibitory neurones, are those that give shape to our movements. In the intact developing baby, whole body reflex behaviours are deconstructed by selected/learnt inhibition and are superseded by discrete and therefore more flexible movement (Edelman 1993, Okamoto 2004). Continuing the analogy above, with maturation of the nervous system the number of switches is increased, thereby increasing movement repertoire and versatility. In those with damage affecting the inhibitory mechanisms that versatility is either never developed, as in people with CP, or it is lost, as in MS or BI.


Interpretation of positive features One of the biggest challenges for the HCP is in learning to differentiate between what is and what is not abnormal activity of the neuromotor system. There is considerable confusion not only in terminology but also in the interpretation of the presenting features and analysis of the underlying problem (Carr & Shepherd 2003). The former leads to misapplication of terms, the latter and by far the most important for the disabled person, leads to inappropriate treatment/management of the problems, sometimes with disturbing consequences, as when inappropriate surgery interferes with a functional coping strategy (Case History 2, Ch. 8).

Mechanical versus physiological hypertonicity Spasticity Spasticity has been defined as a ‘velocity dependent increase in tonic stretch reflexes with exaggerated tendon jerks resulting from hyperexciteability of the stretch reflex as one component of the upper motor syndrome’ (Lance 1990). The terms spasticity or hypertonus are often used interchangeably and applied in any situation where resistance is felt on passive movement, whether this is due to mechanical changes in the tissues, or to released neural activity. It is essential that a differentiation is made between the two causes of muscle stiffness. Spasticity or hypertonus are used frequently to describe the current neurological status of the individual, e.g., ‘the patient is spastic/ hypertonic’. According to Lin (2004) there is no such thing as a spastic body or spastic limb. The increase in muscle stiffness is attributed, at least in part, to the muscle tissue changes that occur soon after denervation or immobility (Aubou-Salem & Ishikawa 2001, Gardiner 1996, Goldspink & Williams 1990). In addition to the increase in the proportion of connective tissue noted earlier, the muscle fibres lengthen or shorten according to the position in which the muscle is held, facilitating maximum tension when activated in the new position. Optimal tension is produced in the muscle fibre when the overlap of the contractile elements (actin and myosin molecules) are positioned for maximum attachment of the cross bridges that cause the contraction (Newham & Ainscough-Potts 2001).

Thus in the adapted shortened position the muscle response to stretch is activated earlier. In any long-standing case of immobility or nonuse of the muscles the resistance to passive movement is more, if not all, mechanical rather than physiological, even if the spasm and spasticity were thought to be the initial driver of a particular contracture. Pope et al (1991) found the measurements of knee flexion contraction taken preoperatively under anaesthetic confirmed the earlier assessment measurement. The belief that spasticity leads to contracture has been questioned by O’Dwyer et al (1996) who studied tonic reflex response and resistance to movement in cyclical elbow flexion/extension in a group of hemiparetic patients some months following stroke. They found no correlation between increased reflexes and increased resistance to elbow movement (hypertonia). They suggest that shortening of the muscle tissue potentiates the stretch reflex on passive movement in some patients, an adaptation secondary to altered innervation and weakness in the muscle.

Muscle tone Many clinicians are concerned with the tone of the muscle, the condition of the individual being defined by tonal status, i.e. hyper- or hypotonic. The focus on tone is misdirected according to Burke (1988), Grimm (1983), Hare (1987) and to Carr & Shepherd (2003). They argue that attention directed to so-called ‘tone’ diverts attention from the real problems, that is, what the person cannot do or has lost. Further, the concept of tone itself is vague, even though the term muscle tone is common parlance, but the mechanisms involved are many and complex (Davidoff 1992). Normal healthy muscle at rest does have a certain feel or consistency but tone is variable, with the result that the term increased tone begs the question, relative to what? (Landau 1997). Research using EMG has shown that there is no evidence from these studies to suggest that increased tone is due to any increase in neural activity (Burke 1983, Burke 1988, Dietz & Berger 1983). The slight tension felt in healthy muscle is thought to be due to the mechanical properties of the muscle. Nevertheless, the slack ‘feel’ of the suddenly and recently

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denervated muscle is quite different from that of the relaxed healthy muscle. Tone remains a mystery! The correct cause of stiffness must be identified in order that appropriate treatment is given and inappropriate measures avoided, e.g., the use of botulinum toxin when attempting to reduce hypertonus in a long-standing hemiplegic upper limb with established contracture. The failure of the procedure in these cases is disappointing to the person receiving the treatment and is a waste of scarce resources. However, such measures are not wholly inappropriate in some cases where both mechanical and neural activity co-exist, temporarily blocking the neural input, e.g. allows the contracture element in the muscle to be addressed more effectively. However, any lengthening gained in this way is unlikely to be maintained without ongoing measures to maintain length (Farmer & James 2001).

Spasticity or compensatory/coping strategies? Not only is it necessary to differentiate between the neural and mechanical causes of muscle stiffness, but the term hypertonic or spastic is misapplied in other situations. Common amongst these is the use of the term spasticity to describe the adaptive or coping strategies used by the disabled person to overcome the adverse effects of his impairment. For example, the child who stands on tiptoe will flex his knees and hips, internally rotate his hips and adduct his knees (see Fig. 2.16). Arnold et al (2000) found that it is unlikely that spasticity in the adductors and hamstrings is responsible for the excess of internal rotation at the hip joint and concluded that another cause for the posture should be found. It is suggested here that the posture is adopted to gain stability because the base area is small, the centre of gravity is high and muscle weakness prevents stabilization of the lower limb joints. This can be verified by providing external support for the ankle and knee, in which case the child stands more erect and with legs abducted (Pope 1993, Murphy 1996; see also Ch. 2, Fig. 2.16). A misinterpretation of this posture leads to a diagnosis of spastic adductors as the cause of the posture, with possible surgical lengthening, that at best does not alter the posture and at worst interferes with the person’s ability to stand. As long ago as

1988, Burke (p. 406) observed that ‘if the emerging positive features are viewed as compensatory, the tendency to treat them automatically as harmful might be resisted’.

Associated reactions or balance strategies? Misinterpretation of cause and effect may occur with so-called associated reactions. Some at least of these reactions should be seen as strategies used by the disabled person to gain balance and stability. In Chapter 2 it was seen that balance and stability take precedence over functional activity. In Figure 2.2 the young girl with cerebral palsy is using her upper limbs as postural organs, to prevent falling over. In Figure 4.1(a) the woman with hemiplegia uses her limbs to aid balance when walking without her stick, the tension in the muscles of her hemiplegic arm increasing accordingly. When stability is improved by using her stick, the tension in the affected arm reduces and the arm relaxes (Fig. 4.1(b)). The effect of first securing base stability for relaxation of a hypertonic arm is clearly demonstrated in Figure 4.2(a) and (b), a case described earlier by Pope (1992). Some studies lend weight to the view that the muscles in the situations described above are responding to a change in circumstance. Dietz et al (1986), for example, found an increased proportion of slow fibres in muscles that are usually predominantly fast acting in people with cerebral palsy and hemiplegia. The responsiveness of muscle to change in demand is well documented and reviewed by Pette (2001). It therefore seems reasonable to speculate that the change is brought about through a change in function in these muscles.

Innate reflexes become volitional responses Spasm and spasticity are terms frequently applied to the disordered movements made by children and adults with cerebral palsy. To illustrate the point, in some severe cases, the individual’s response to anything, be it pleasure, pain or an attempt to function, is to extend backwards, pushing with the feet, often combined with twisting within the trunk. This behaviour is sometimes referred to as ‘extensor spasticity’ that needs to be ‘controlled’ or ‘inhibited’. It is suggested here that this is a deliberate response,


a

b

Figure 4.1 In (a) the tension in the left arm increases as this woman attempts to walk without any support. When provided with a walking stick, (b) the left arm relaxes with increased stability indicating the link between the increased tension and precarious balance.

albeit ineffective, and is the only one of which the person is capable (Pope 2002). It is proposed that such forms of activity arise from the inability of the developing child to deconstruct innate reflexes, i.e. switch off unwanted activity and reorganize neural pathways according to ‘rewarded’ experience (Edelman 1993), that would permit discrete and versatile activity. Even earlier, Dietz & Berger (1983) suggested that the co-activation of leg muscles in cerebral palsy demonstrated neuronal immaturity. Vrbova et al (1985) found that a critical period exists for inducing change in rat muscle fibre activity, which may have implications for the development of appropriate muscle activity in children born with lesions affecting the upper motor neurone and its pathways. Lack of the appropriate

neural stimulation/experience at a critical period may account for the fact that once entrenched these responses become difficult to deconstruct and the learning of new motor patterns becomes exceedingly demanding, while recognizing that potential for change remains throughout life (Galea 2004, Lebeer 1998). Early training incorporating Edelman’s theory of Neuronal Group Selection may begin to address this difficulty (Edelman 1993, Hadders Algra 2000). In summary, from the examples described here it is clearly imperative that the correct analysis and interpretation of the presenting signs of neurological impairment are made. Only by doing so can appropriate intervention and management be prescribed.

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a

b

Figure 4.2 (a) The flexed hemiplegic arm relaxes (b) with restoration of stability in standing following reconstructive surgery to the foot. (Reprinted from Pope, 1992, with permission.)

Measurement of spasticity The measurement of spasticity or hypertonus is difficult due to changes of degree in response to situations and circumstance and the uncertainty in many cases about what one is actually measuring. True positive features of UMN lesions are known to

vary on a day-to-day basis, even during the day and with emotion and general health (Norton 2004, Perry 1993). They also vary with the posture and position in which the person is placed and with the support given (Burke 1988, Pope 1992). The difficulty is compounded by the confusion that

Subcortical Lesions

surrounds what are and what are not true positive manifestations of neurological impairment. The methods frequently used to measure spasticity and quoted in the literature are those based on the Ashworth scale (Ashworth 1964) and the Pendulum test (Wartenburg 1951). These methods test resistance or stiffness and, as noted earlier, resistance to passive movement may be mechanical as well as physiological or even psychological. As mechanical changes occur in the muscle very soon following immobility from whatever cause, the validity of these tests as measures of spasticity is suspect (Ashford 2005, Damiano et al 2002). When used in longerstanding conditions where contracture is the underlying feature of stiffness such measures are, to all intents and purposes, not appropriate (Pope et al 2000). Although not a measure of the problem, an observed increase in a positive feature, or as reported by the disabled person, is sometimes the first indicator of an underlying problem, e.g. infection, constipation or emotional upset. The person most familiar with the disabled person, usually the primary care provider, is therefore in the best position to detect this change and to seek help, provided they are aware of the significance of such a change. Instead of quantifying the positive features of neurological impairment, a method of evaluating these features in terms of degree of control of the problem is described in Chapter 5, which although subjective, allows quantification of the impact of intervention.

SUBCORTICAL LESIONS The subcortical regions are concerned with the quality, regulation and coordination of movement as well as with automatic/learned activities. Lesions affecting the basal ganglia and the cerebellum are relatively frequently encountered in people with severe and complex pathologies. As with UMN lesions the clinical signs are divided into negative and positive features, both of which may be influenced, to a greater or lesser degree, by physical management procedures, especially those relating to posture and position.

Lesions occurring in the basal ganglia and cerebellum do not cause a paralysis of movement as such but interfere with the timing, accuracy, coordination and flexibility of movement. In the severest forms, movements become completely nonfunctional. Weakness is not a usual feature of lesions in the basal ganglia and cerebella regions; movements may in fact be very strong, but dexterity and manipulation are affected to a greater or lesser degree depending upon the extent of the impairment. Postural stability and balance are frequently affected and falls may be a common occurrence, especially in the more severe conditions. As with the UMN, the positive features of lesions in the subcortical region have been the major focus of attention in research and clinical practice. Nevertheless, the climate is changing and the negative features are being addressed. This is reasonable in light of the fact that the person affected with these lesions is likely to benefit more by focusing on the things that he cannot do rather than on the more obvious features of the lesion. Once again, little or no correlation has been found between a decrease in positive features and increase in functional ability, as Neilson & McCaughey (1982) found on reduction of athetoid movement in people with cerebral palsy. The positive features of lesions in the basal ganglia and cerebellum are probably some of the most distressing to the disabled person and challenging for the HCP managing the condition. On the whole, they are probably less amenable to direct modification through physical management procedures alone, such as posture support and positioning, than the positive features of UMNS. Nevertheless, there is much that can be done to relieve the worst effects of these features, especially in combination with pharmacological agents.

Basal ganglia lesions Purdon Martin extensively and minutely studied patients with impairments arising as a result of pathologies affecting the basal ganglia. His observations and findings were published in a classic work (Martin 1967), in which the negative and positive features of lesions in this area were described in great detail. He reported upon the characteristics of the features as they related to impairment in the

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basal ganglia and to the effects of these impairments on posture and movement. Research since that time has confirmed and extended the detail but the substance of Martin’s work remains valid to this day. The positive features of lesions of the basal ganglia are often difficult to classify according to the definitions in the standard textbook, but essentially they are manifested in the following way.

Athetosis and dystonia Athetoid/dystonic movements, are stormy bursts of wavering uncoordinated ‘off line’ and ‘off target’ movements, frequently seen in cerebral palsy. The movements are somewhat stereotyped and often distort the body into characteristic attitudes. They tend to increase on attempted activity. The movements seriously interfere with both functional and care activities. In the worst cases, they are distressing both for the person affected and his care provider. The person with athetosis will adopt certain strategies, e.g. sitting on his hand or holding his knees together in an attempt to stabilize his posture and control the movement (see Fig. 6.12(a)). In many cases the limbs are constrained by straps or harnesses in an attempt to control the problem.

conditions (Barnes & Ward 2000). It is characterized by bradykinesia, a slowness of voluntary movement and rigidity, a term applied to the stiffness of the limbs and in the severest cases, of the whole body. Discrete movement of a limb or part of a limb becomes difficult. In the worst cases the whole body is in switched on mode (see p. 72), when even passive movements are difficult to perform, the feel of which is likened to that of bending a lead pipe. Fine tremor, evident at rest, is another feature of Parkinsonism but is less disabling than either bradykinesia or stiffness. Initiation of movement or activity and stopping it once started become a problem in Parkinsonism; the individual is, as it were, unable to overcome inertia (see Ch. 1). On occasion freezing occurs, e.g. when walking, the feet suddenly refuse to move, as if they are stuck to the floor, while the trunk continues to move forwards; as a result balance is affected and falls are frequent. Speech becomes slow and indistinct as articulation is affected and swallowing problems develop, further predisposing to respiratory complications in the disabled person already vulnerable as a result of reduced lung excursion. Facial features are characteristically expressionless.

Chorea

Ballismus

Choreic movements are characteristic in people with Huntington’s disease. These movements are somewhat similar to athetoid/dystonic movement but they are essentially random and unintentional, more irregular and jerky. They are usually not stereotypical. Choreic movements may develop as a result of habituation to levadopa for the relief of Parkinsonism. Both athetoid/dystonic and choreic movements consume large amounts of energy, as Johnson et al (1996) confirmed in their study of adults with athetoid cerebral palsy. Individuals with these conditions are usually very thin and often hot.

Ballistic movements are high amplitude tremors, sometimes referred to as wing beating, that accompany some forms of multiple sclerosis, usually the more malignant type. The movements are not confined to the upper limbs but affect the whole body. Individuals affected adopt characteristic postures in an attempt to control the movements: the head is thrust back against the backrest of the seat, the arms are folded and held close to the chest and the legs push against the floor or the footrest of the wheelchair (Fig. 4.3). Such cases are extremely distressing to the individual affected, rendering any movement completely non-functional (although strength is not lacking), and making them vulnerable to injury. Speech and swallowing are likewise affected. Individuals with these features consume vast amounts of energy; they are usually very thin as sufficient nutritional intake is a major problem

Rigidity Rigidity is characteristic of Parkinson’s disease but is not exclusive to that disease. Parkinsonism is seen in other degenerative, toxic or infectious

General Management of CNS Features

Ataxia

Figure 4.3 This man with severe ballistic movements folds his arms tightly against his chest and thrusts his head and trunk against the backrest of the wheelchair in an effort to control the movements.

without enteral (tube) feeding directly into the stomach.

While ataxia is the general term used to describe the impairments of posture and movement resulting from lesions in the cerebellum, these impairments can be further subdivided as follows: Dysmetria is seen in the inaccuracy in timing, force, amplitude and distance required to perform a particular task. Dyssynergia is the lack of coordination between muscle groups resulting in clumsy movement. Rebound signifies release of resistance to a movement that results in excessive rebound and overshooting. Dysdiadochokinesia is the inability to perform rapid alternating movements as in pronation and supination of the forearm. Tremor is not seen at rest. It is often called intention tremor and increases towards the end of goal-directed activities (Beppu et al 1984). Tremor may affect the whole body when the person is attempting to stand or sit. Hypotonia is felt in a reduced resistance to passive movement and lack of ability to maintain a position, for example holding an arm at shoulder level.

Cerebellar lesions The cerebellum has a very complex involvement and influence in the quality and regulation of movement. Although the cerebellum has no direct connection with the spinal cord, it regulates cortical, spinal and vestibular mechanisms through reciprocal neuronal connections (Rothwell 2004). The cerebellum is concerned with the calibration of movement according to the specific task and recalibrates it if errors are made in coordination, timing and motor learning generally and in the acquisition and performance of automatic skills and activities (Massion 1998, Rothwell 2004). Cerebellar lesions are associated with a number of different pathologies such as MS or traumatic brain injury (TBI), or it may be primarily affected as in cerebellar disease. Lesions may occur in differing parts of the cerebellum with features corresponding to the area affected, e.g. in central lesions, regulation of posture, balance and muscle tone predominate while in lesions affecting the lateral regions, incoordination and inaccuracy of movement are dominant together with delay in initiating and terminating activity (Beppu et al 1984).

GENERAL MANAGEMENT OF CNS FEATURES For more detail, particularly of the early management and treatment techniques applied to many of the conditions, the reader is referred to Carr & Shepherd (2003), Edwards (2002), Stokes (2004) and to Scrutton et al (2004) with particular reference to children. The main points as they relate to the ongoing physical management of people affected by CNS lesions, particularly in the more severe conditions and later stages of the pathologies will be addressed here. It will be obvious from the foregoing discussion of neurological features both negative and positive, that management of these phenomena is challenging in many cases. The presenting condition of the disabled person with neurological impairment affecting the CNS is usually complex and not at all easy to analyse, becoming progressively more difficult in deteriorating conditions. Nevertheless, thorough analysis is critical to successful management and is dependent upon comprehensive

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assessment of the affected individual (see Ch. 5). It is only then that the real cause of the problems can be identified and appropriately addressed. Management of neurological features in the disabled person concentrates on modifying the deficits in postural and functional ability and in preventing, or at least minimizing, the secondary complications associated with these deficits. Management of the posture and position of the disabled person is the foundation of neurological rehabilitation and forms the platform upon which other measures are built. Without control of the posture as a priority, function cannot be facilitated and other measures such as splinting are likely to be ineffective (see Ch. 6). Strategies are developed and encouraged, to cope with movement disorders. However, where such strategies incorporate use of a particular posture and movement behaviour, measures must be introduced to counter the deleterious effects of these postures and movements (see Ch. 10, p. 233). People with the various movement disorders described in this chapter may benefit from the pursuit of therapeutic leisure activities such as horse riding (hippotherapy) and swimming (hydrotherapy) (see Ch. 9). Where possible the disabled person should be encouraged to participate in these forms of exercise whenever the facility is available and provided sufficient safety precautions are in place. These activities, when conducted by people with the necessary expertise, may be a useful adjunct to or, in some situations a substitute for, conventional therapy. While there is little in the way of clear evidence to support the benefit of these activities, a great deal of anecdotal evidence supports their use (see Ch. 9).

Management of UMN lesions Negative features The specific areas of weakness, sluggish movement and lack of dexterity are first identified. Every effort should be made to prevent tissue adaptation, not only to avoid shortened tissue (Carr & Shepherd 2003, Edwards 2002, Stokes 2004), which in some cases may potentiate reflex hyperexcitability (O’Dwyer et al 1996), but also to prevent over-lengthened tissues, which affect joint stability and the ability to produce an effective muscle force.

Goldspink & Williams (1990) report that the proportion of connective tissue to muscle fibre tissue in muscles held in a lengthened position does not alter, in contrast to muscles held in a shortened position, therefore the position in which the muscle is held seems to be an important factor in determining muscle stiffness. Tissue length is most easily maintained by addressing the posture and position that the disabled person adopts or in which he is placed, by regular and frequent passive movements and where necessary, by splinting (Edwards & Charlton 2002). If splinting is used it is imperative that the posture of the individual is addressed first. Splinting that is removable for the performance of passive movements is preferable to sustained splinting in order to prevent degenerative changes in the joints and loss of flexibility in the soft tissues (see Ch. 3). Facilitation of function complements these activities; various techniques and modalities are described in Carr & Shepherd (2003), Edwards (2002), Scrutton et al (2004), Stokes (2004).

Positive features The aim of physical management in relation to positive features arising from UMN lesions is to control posture and position of the disabled person in such a way that allows spasms to occur but on relaxation, the posture returns to the desired position. The means by which this is accomplished are set out in Chapters 6 and 7. Pharmacological agents are frequently used in combination with positioning procedures in the control of positive features (see Ch. 8). Without appropriate support, spasms will ‘drive’ the affected part of the body into a certain position where it will rest when the spasm has passed. For example, following extensor spasm the position of the legs will stay in full extension, internal rotation and adduction after the spasm ceases. Further spasms then reinforce this position with tissues adapting quickly, the shortened tissues perhaps potentiating a reflex response to stretch (O’Dwyer et al 1996), creating a vicious circle of events. Based on the findings of O’Dwyer et al (1996) and Goldspink & Williams (1990), the development of spasticity is best prevented or minimized by maintaining the length in vulnerable tissues.


Management of subcortical lesions Negative features As with UMN impairment, the aim is to address the functional deficit. Weakness is usually not a problem and where involuntary movement occurs the range of movement is not seriously reduced. However, where compensatory strategies involve constant use of a particular asymmetrical posture, counter strategies should be incorporated into the individual’s daily programme to minimize likely tissue adaptation (see Ch. 10, p. 233).

Positive features The appropriate postural support is as usual the priority, together with use of counter strategies, and passive stretch should be employed to minimize tissue adaptation resulting from stereotypical movement. There are a number of specific measures that may assist in controlling some of the more persistent positive features.

Athetoid/dystonic movement Postural stabilization Support in the straddle forward leaning position has been found by this author to be a more effective means of stabilizing posture in people, especially children, with athetoid movement than conventional seating (Pope et al 1994, see also Ch. 6, Section 2, p. 124). In some people with athetoid/dystonic movement, the provision of straps to stabilize the base position, for example, securing the seat position with pelvic, knee and foot straps, enables improved functional performance in the upper limbs (see Ch. 6, Fig. 6.12(a) and (b)). Trunk balance training may further complement this approach with improvement in performance. A rocker board is useful for this purpose as the disabled person is trained to secure a wide stable base while rocking the board from side to side, thus directing effort to the trunk (Fig. 4.4). Gaiters may be used to control arm movements which, by reducing the complexity of movement, allows effort to be directed to use of the arm as one unit (see Fig. 6.22) with improvement in direction and in hand function (Hare 1983).

Restraint There are occasions when the severe athetoid/dystonic movements must be restrained to prevent injury, as when the feet get caught in the castors of the wheelchair or limbs are damaged as they fly out when going through doors. Very careful assessment and evaluation is required to determine where and how much restraint will best serve the individual; the minimum sufficient to prevent damage is always advised. Use of crossover straps may be helpful, e.g., lateral movement of the foot is restricted by a length of strap attached to the foot or arm and fastened to the opposite side of the (wheel)chair. Straps arranged in this way allow a certain freedom of movement medially, to either arms or legs, but limit the range of lateral movement possible. In any strap used to fix a position, e.g. an arm on an armrest, an elastic insert in the strap is strongly recommended to aid tolerance and comfort. Hydrotherapy Hydrotherapy is often advised for people with cerebral palsy, especially of the athetoid/dystonic, choreic forms. There is empirical evidence to suggest that immersion in the water results in relaxation of these movements (see Ch. 9). Parents/care providers frequently comment that the person with athetosis/dystonia is easier to handle after a session in the hydrotherapy pool. However, to date there is no clear evidence of such an effect. Well-designed studies in this area are urgently needed. Lycra suits Lycra suits are made of a stretchable material and are frequently reinforced in areas requiring additional control. They apply pressure over the body surface and in so doing have been found to provide postural support and greater control of limb movement, especially in children with athetoid movements (Blair et al 1995, Corn et al 2003, Rennie et al 2000). These suits do have a place in the repertoire of methods of controlling unwanted movement but to date there is a lack of firm evidence to support the benefits claimed for them. In addition, some problems have been found in the use of these suits; they are said to be difficult to put on and take off, they can be hot to wear and some children do not tolerate them well.

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b

Figure 4.4 This young man with athetoid cerebral palsy (a), is training trunk control by moving the rocker board from side to side while maintaining balance (b).

a

Lycra suits are not generally prescribed for adults due, in the main, to the difficulties already mentioned, particularly that of getting into and out of the suit. The principle of the lycra suit is used for a stocking-like garment made of lycra that provides segmental control of the arm or leg and may be useful in certain cases of more localized movement disorder.

Choreic movement

The choreic movements associated with Huntington’s disease are particularly

distressful and difficult to manage. They usually involve the whole body and are very strong at times, especially in the late stage of the disease. People with these features generally dislike restraint of any kind; for this reason postural support is not usually well tolerated. It is worthwhile trying flexible restraint such as localized lycra splinting or elastic straps. In the most severe cases, if restraint is resisted, management consists of trying to ensure that the disabled person is as safe and secure as possible in terms of minimizing self-injury or falling out of the bed or


Figure 4.5 This man is given full support to all body segments. Provided the support is maintained the ballistic movements are controlled.

(wheel)chair. It is important to be aware that the choreic movements are not the only movement disorder found in affected individuals; they may also exhibit rigidity and spasms. (For further details of the disease and management of affected people refer to Quarrell & Cook 2004.)

Ballism

This symptom can be extremely difficult to manage, especially when severe. The movements are strong and random, affecting all parts of the body. Complete support is necessary in both sitting and lying, to control the movements and to prevent self-damage (Fig. 4.5). People with ballistic movements have been found to benefit from sessions in a hydrotherapy pool. Immersion in the water appears to reduce the movement temporarily. Affected individuals greatly appreciate the relief, albeit transitory, of hydrotherapy (see Ch. 9).

Parkinsonism

Developing strategies to cope with the movement difficulties may ameliorate the stiffness/rigidity, stumbling/shuffling gait and dysarthria, associated with Parkinson’s disease. The person disabled by these features often finds ways to ‘trick’ himself into a desired activity, by using an alternative route via a previously learned/automatic activity. For example, he may

find that he can sing but has difficulty with speech; he may be able to dance but stumbles when walking, to turn around but can only do so by walking in a circle. When looking for a strategy that will work with a particular person it is useful to explore skills developed in premorbid activities. Affected individuals appear to have a problem with internally cued movement, i.e. from motor memory, therefore provision of an external cue sometimes helps functional performance (Rothwell 2004), e.g. when difficulty is found in initiating walking, provision of a stick to walk over may help. Exercise regimes are useful in some cases of Parkinsonism, where cognition overrides the difficulty in carrying out an automated activity. (For further detail of the disease and treatment techniques refer to Carr & Shepherd 2003, Jones & Playfer 2004.) Late stage Huntington’s and Parkinson’s diseases focus on a regime of physical management outlined in Chapter 10.

Cerebella ataxia Once again the emphasis is on providing the postural support necessary to maximize functional control of movement in the limbs. In the later stages this means provision of total body support as described in Chapter 6 for seating, which may facilitate limited arm function, such as driving a powered wheelchair. In other cases, developing strategies to overcome the disability caused by the ataxia is helpful, e.g. leaning on the arms on a table controls the tremor/ataxia in the arms as a whole and enables activities such as independent feeding. Closing the eyes while eating has also been found to assist in the control of ataxia. (For further details of the disease and treatment techniques refer to Carr & Shepherd 2003, Thornton & Kilbride 2004.)

Nutrition As mentioned earlier, the positive features of subcortical lesions consume considerable amounts of energy. As a result, the disabled person is often very thin and hot. They may become quite severely malnourished in severe cases. Nutrition may be further hampered by the difficulties in placing food in the mouth due to titubation of the head, and by

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swallowing problems. When sufficient nutrition becomes difficult, alternative means of feeding should be considered, for example directly into the stomach or duodenum via percutaneous gastrostomy. It is generally considered advisable to introduce this form of feeding sooner rather than later, that is, before general health is seriously affected (for further reading on this topic refer to Bowling 2004).

SUMMARY The negative and positive features of neurological impairment of the CNS are best managed by addressing postural imbalance and instability as a priority.

While the positive features of neurological impairment have been the focus of attention both in research and in the clinic, the emphasis is changing, with effort being directed towards addressing the negative aspects of the condition, that is the postural and movement deficits. By doing so many of the positive features are controlled and functional activities are facilitated. The management of people with patent neurological deficit focuses on securing as a priority, balance and stability of posture; in developing compensatory or coping strategies; in ensuring that where these compensatory or coping strategies predispose to secondary problems such as contracture, counter measures are introduced to minimize the effects. The pursuit of therapeutic leisure activities wherever possible has been emphasized.

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Burke D 1988 Spasticity as an adaptation to pyramidal tract injury. In: Waxman SG (ed) Functional recovery in neurological disease. Advances in Neurology 47. Raven Press, New York, p 401–423 Carr J, Shepherd R 2003 The upper motor neuron syndrome. In: Neurological rehabilitation, 4th edn. Butterworth– Heinemann, Oxford, p 185–204 Charlton JL 1994 Motor control issues and clinical applications. Physiotherapy Theory and Practice 10: 185–190 Childers MK, Brashear A, Jozefczyk et al 2004 Dose dependent response to intramuscular botulinum toxin type A for upper limb spasticity in patients after stroke. Archives of Physical Medicine and Rehabilitation 85(7): 1063–1069 Corn K, Imms C, Timewell G et al 2003 Impact of second skin lycra splinting on the quality of upper limb movement in children. British Journal of Occupational Therapy 66(10): 464–472 Damiano D, Quinlan J, Owen B et al 2002 What does the Ashworth scale really measure and are instrumented measures more valid and reliable. Developmental Medicine and Child Neurology 44: 112–118 Davidoff R 1992 Skeletal muscle tone and the misunderstood stretch refex. Neurology 42: 951–963 Dietz V 1992 Spasticity: Exaggerated reflexes or movement disorder? In: Forssberg H, Hirschfeld H (eds) Motor disorders in children. Karger, Basel, p 225–233 Dietz V, Berger W 1983 Normal and impaired regulation of muscle stiffness in gait: a new hypothesis about muscle hypertonia. Experimental Neurology 79: 680–687

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Hinderer SR, Dixon K 2001 Physiologic and clinical monitoring of spastic hypertonia. Physical Medicine and Rehabilitation Clinics of North America 12(4): 733–746 Johnson RK, Goran MI, Ferrara MS et al 1996 Athetosis increases resting metabolic rate in adults with cerebral palsy. Journal of American Dietetics Association 96(2): 145–148 Jones D, Playfer J 2004 Parkinson’s disease. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 203–220 Katz RT, Rymer W, Zev 1989 Spastic hypertonia: mechanisms and measurement. Archives of Physical Medicine and Rehabilitation 70: 144–155 Lance JW 1990 Letter to the editor. The Lancet 335(8689): 606 Landau WM 1997 Muscle tone: hypertonus, spasticity, rigidity. In: Adelman G (ed) Encyclopedia of Neuroscience, Volume II. Birkauser, Boston, Basel, Stuttgart, p 721–722 Lawes N 2004 Neuroplasticity. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 57–72 Lebeer J 1998 How much brain does a mind need? Scientific, clinical and educational implications of ecological plasticity. Developmental Medicine and Child Neurology 40: 352–357 Lin JP 2004 The assessment and management of hypertonus in cerebral palsy: a physiological atlas (‘road map’). In: Scrutton D, Damiano D, Mayston M (eds) Management of the motor disorders of children with cerebral palsy, 2nd edn. MacKeith Press, Cambridge, p 85–104 Martin JP 1967 The basal ganglia and posture. Pitman, London Massion J 1998 Postural control systems in developmental perspective. Neuroscience and Biobehaviour Review 22(4): 465–472 Murphy W 1996 AFO’s and KFO’s and surgery in cerebral palsy – what to use when? Physiotherapy Research International 1(4): 213–220 Neilson PD, McCaughey J 1982 Self regulation of spasm and spasticity in cerebral palsy. Journal of Neurology, Neurosurgery and Psychiatry 45: 320–330 Newham D, Ainscough-Potts 2001 Musculoskeletal basis for movement. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, London, p 7–36 Norton C 2004 Bowel management in multiple sclerosis. Gastrointestinal Nursing 2(6): 31–35 O’Dwyer NJ, Ada L, Neilson PD 1996 Spasticity and muscle contracture following stroke. Brain 119: 1737–1749 Okamoto T, Okamoto K, Andrew PD 2001 Electromyographic study of newborn stepping in neonates and young infants. Electromyography and Clinical Neurophysiology 41(5): 289–296 Perls F 1969 Gestalt theory verbatim. Real People PressMoab, Utah, USA Perry J 1993 Determinants of muscle function in the spastic lower extremity. Clinical Orthopeaedics and Related Research 288:10–26 Pette D 2001 Historic perspectives: Plasticity of mammalian skeletal muscle. Journal of Applied Physiology 90(3): 1119–1124

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Pope PM 1992 Management of the physical condition in patients with chronic and severe pathologies. Physiotherapy 78(12): 896–903 Pope PM 1993 Contracture – Cause or effect of abnormal posture and gait in cerebral palsy? Booklet 6, Case histories and terminology. Published by Hare Association for Physical Ability Pope PM 2002 Posture management and special seating. In: Edwards S (ed) Neurological physiotherapy. Churchill Livingstone, Edinburgh p 189–218 Pope PM, Bowes CE, Tudor M et al 1991 Surgery combined with continuing post-operative stretch for release of knee flexion contractures in cases of multiple sclerosis. Clinical Rehabilitation 5: 15–23 Pope PM, Bowes CE, Booth E 1994 Postural control in sitting, the Sam system: Evaluation of use over three years. Developmental Medicine and Child Neurology 36: 241–252 Pope PM, Ainsworth K, Wade D 2000 Control of position in supine lying: the effect on loading and posture in multiple sclerosis subjects with spasticity. Poster presentation, Conference MS 2000 ‘The challenge of service provision’. Harrogate, 12th–14th November Quarrell O, Cook B 2004 Huntington’s disease. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 221–233 Rennie DJ, Attfield SF, Morton RE 2000 An evaluation of lycra garments in the lower limb using 3D gait analysis and functional assessment (PEDI). Gait and Posture 12: 1–6

Rothwell JC 2004 Motor control. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 1–20 Sahrmann SA, Norton BS 1977 The relationship of voluntary movement to spasticity in the upper motor neuron syndrome. Annal of Neurology 2: 460–465 Scrutton D 1998 Editorial: Imprecision? Precisely! Developmental Medicine and Child Neurology 40(2): 75 Scrutton D, Damiano D, Mayston M 2004 (eds) Management of the motor Disorders of Children with Cerebral Palsy, 2nd edn. MacKeith Press. Cambridge p 85–104 Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh Thornton H, Kilbride C 2004 Physical management of abnormal tone and movement. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 431–450 Vrbova G, Navarrete, Lowrie M 1985 Matching of muscle properties and motorneurone firing patterns during early stages of development. Journal of Experimental Biology 115: 113–123 Walters EH, Stickland NC, Loughna PT 2000 Expression of myogenic regulation factors in denervated and normal muscles of differing phenotype. Journal of Muscle Research and Cell Motility 21(7): 647–653 Wartenberg R 1951 Pendulousness of the legs as a diagnostic test. Neurology 1: 18–24

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Chapter

Assessment and outcome


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Assessment

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Outcome

This chapter covers two main topics: the assessment process and measurement of outcomes.

Assessment

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Section 1 Assessment

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Principles underpinning the construct Range of outcomes

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Process of assessment

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Physical examination and measurement 91 Positive factors

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Negative factors

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Assessment procedure Data presentation

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Section 2 Outcome

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Definition and perspective Measurement

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Time for assessment and goal setting Summary References

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Assessment is the most important procedure in the healthcare professional’s (HCPs) contact with the disabled person. It is the first step in rehabilitation (Wade 1996). The information gained from assessment is fundamental to successful physical management of the disabled person. But that information must be comprehensive and relevant, thus the process of acquiring that information is equally important. The first thing an assessment process must have is a clear purpose, a view emphasized by others (e.g. Freeman 2002, Wade 1996). In the field of severe and complex disability the purpose is to obtain the information required to facilitate the implementation of optimum physical management in a given individual who has limited, if any, ability to walk. The most effective intervention is that based on:

• Comprehensive gathering of relevant

information. • Analysis of findings. • Identification of problems. • Discussion with those most involved. • Specification of achievable aims and realistic objectives.

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The resulting action invariably involves compromise. This inevitably takes time and demands significant and appropriate expertise.

Outcome Outcomes are twofold and should not be confused with the assessment process. There is the outcome from the assessment process itself, that is, the action/intervention prescribed, and the outcome of that action/intervention. The latter will depend upon the perspective from which the outcome is viewed, for example the disabled person’s or care provider’s point of view is likely to differ significantly from the clinician’s view, as McDonald (2003) found in her survey of parents’ and clinicians’ views on their children’s adaptive seating systems. Outcome of the action/intervention is very difficult to measure meaningfully in the field of severe and complex disability, although without such measures it is not possible to evaluate the effectiveness of intervention or to justify use of resources. Whatever the measure chosen to assess the disabled person and to judge final outcome, it must be relevant and applicable to the particular disabled person group. It is not appropriate to use tools designed for other groups or purposes (Ashford 2005, Wade 1996). Assessment and evaluation of final outcome should follow a standardized and recorded procedure in order to monitor:

• Process of assessment. • Progress of the condition of the disabled person. • Effectiveness of intervention. • Satisfaction of the disabled person. • Input of staff. • Service costs. Further, it is always recommended (e.g. Freeman 2002, Hammond 2000, Wade 1996) that any measures used in assessment or to evaluate outcome should possess the necessary scientific properties of: Reliability — provide accurate, consistent and repeatable results. Validity — appropriate to that which is measured (asking the right question and answering it by using the most appropriate tool). Responsiveness — sensitivity to change over time.

These criteria have been tested in a number of assessment tools that measure functional ability, level of independence and social integration of the disabled person, that is, in relation to Activities and Participations (ICIDH, WHO 1997, previously, Impairment, Disability and Handicap, ICIDH, WHO 1980). Many of these tools are described and discussed in Wade (1996). To date there are few assessment tools tested against the scientific criteria that are designed for use with people with the more complex conditions where functional ability is minimal. This work is urgently needed.

SECTION 1 ASSESSMENT A different construct was developed for the evaluation of interventions in severe brain injury (Pope 1988) and is represented in Figure 5.1. This construct is the foundation of a standardized assessment and measurement process developed over a number of years, designed specifically for use with disabled people who experience severe and complex physical disability.

Principles underpinning the construct

• Motor and functional performances are not the

only criteria by which to identify a disabled person’s condition in those with static and deteriorating conditions. • Efficacy of intervention cannot be judged by measures of functional ability, independence and social interaction alone. • Criteria related to secondary associated complications must be included to complete the picture. • Relevant information must include all aspects of the individual’s lifestyle. The majority of current assessment tools, e.g. Barthel Index (Mahoney & Barthel 1965); Functional Independence Measure (Granger et al 1993); Gross Motor Function Measure (Russell et al 1989); Rivermead Motor Assessment (Lincoln & Leadbitter 1979) and the relatively new method described by Crow & Harmeling (2002), concentrate on the motor and functional aspects of an individual’s condition. Outcome based on these criteria alone is inadequate


Function

Acute phase

Long term phase

Enhanced recovery

Dynamic success

Spontaneous recovery Well maintained Poorly maintained

Secondary complications

Figure 5.1

Static success Failure

Death

Range of outcomes. (Modified from Pope, 1988, with permission.)

when applied to people with more complex conditions. While motor and functional criteria are important, the situations in which little or no functional recovery is anticipated or even where the ability of the disabled person is decreasing, as in multiple sclerosis (MS) or with ageing in static conditions such as spinal cord injury, cerebral palsy, polio, etc. must be taken into account. If the only criterion by which these cases are judged is functional ability, the effect of intervention designed to minimize/correct secondary complications will go unrecognized. This leads to the belief that therapeutic input is of little use when further functional recovery is not expected; it may even be considered a ‘waste of time’. In reality, appropriate intervention in these cases becomes more rather than less important if optimum physical status is to be maintained. The construct represented in Figure 5.1 has been described and used in earlier publications (Freeman 2002, Pope 1988, 1992, 2002), but has been modified here and is summarized for completeness. While originally applied to, and described for, the braininjured patient, it is equally applicable to other serious pathological conditions. First, we need to identify what is the range of possible outcomes.

Range of outcomes Death – it is accepted that death is always a possible outcome in any serious condition, and at

any stage, as most include or predispose to acute episodes. However, once a medical condition has stabilized, three further possibilities exist for people with serious and complex disability. These are: Dynamic success – This is shown in Figure 5.1 where spontaneous and possibly enhanced recovery occurs. The term indicates motor and functional ability. It is always the most desired outcome and is most likely following traumatic pathologies or birth injuries. An increase in ability may be ‘spontaneous’ as in reduction of swelling in damaged tissues or with maturity and development in the child, or it may be enhanced through treatment or by assistive technology. The distinction between spontaneous and enhanced recovery is difficult to determine but is the focus of much current research. Further, in more complex conditions, change can rarely be attributed solely to healthcare input, as other variables such as social and environmental factors are highly influential in effecting change (Duckworth 1999). Static success – this term is used to describe the outcome in static or deteriorating conditions in which secondary complications are minimal both in number and magnitude. It represents the successful use of interventions designed to optimize the physical status of the disabled person as distinct from their functional status, while recognizing that the former has a bearing on the latter. ‘Static success’ as a legitimate outcome is a very difficult concept for many people in rehabilitation to attune to, especially therapists and doctors, as their training is geared towards functional recovery.

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Nevertheless, it is considered a valid concept that must be fostered in light of increasing numbers of people surviving severe and profound impairment. The focus is on realistic, achievable objectives rather than fostering false expectations. Once this concept is understood, the achievement of such an outcome can be equally satisfying to the disabled person and the health care professional (HCP), as well as to family and friends. ‘Failure’–This term is used to describe the individual who has developed significant secondary complications such as contractures/deformity; tissue damage, infections, pain, constipation, etc. It also includes the development of neurological signs, for example spasms, spasticity. While ‘failure’ is not an ideal term to use as it implies blame, it is difficult to find another more appropriate term. There is a high risk of ‘failure’ in all conditions where mobility is severely impaired. Even where the disabled person is recovering or has the potential to recover, the development of secondary complications must be minimized as these may impede rehabilitation and recovery as, for example, in the case of the person who develops severe contractures during the acute stage following brain damage. Thus, whatever the condition or prognosis, the necessity for intervention must be appreciated.

Process of assessment The process of assessment is illustrated in Figure 5.2. Data Medical Social Environmental Physical Psychological

Identification of problems/needs

Constraints

Recommendations

Objectives

Prescription

Figure 5.2

The assessment process. (From Pope, 2002.)

Data collection Relevant information is sought from the following domains:

• Medical

• Social • Environmental • Psychological • Physical The physical domain incorporates the data collected from examination of the disabled person. Consideration and analysis of the information gathered from these domains leads to the identification of problems and constraints or limiting factors, a distinction that is somewhat arbitrary but one that may assist in clarifying the action to be taken. A problem – is defined as that which can be realistically addressed and resolved or modified by measures within the expertise of the HCP, for example, a pressure ulcer, spasticity, discomfort/ pain, postural instability. A constraint – is defined as an issue which may be difficult or impossible to alter, especially in the short term, but one which must be identified and considered, since such issues will influence objectives and recommendations. Constraints may arise from any of the domains mentioned, for example:

• Medical – impaired sensation, blindness. • Social – age of care provider, number of care

providers involved, work undertaken. • Environmental – wheelchair-turning circle at home, width of doorways, transfers outdoors. • Psychological – limited cognition, behavioural problems. • Physical – critical balance strategies used for functional activity, weight of the disabled person, osteoporosis. Problems and constraints are not entirely mutually exclusive. Each may fall into both categories, for example, limited range of hip joint flexion may be identified as a constraint for a seating recommendation but also a problem in that therapeutic measures might be considered appropriate. Severe spasms may be categorized as a constraint in the current management of the disabled person whilst other measures to relieve the symptom are investigated. When problems and constraints have been identified, the aims as well as the objectives are set. Any proposed action is discussed with the disabled person and primary care provider together with the


implications for lifestyle. Adverse as well as anticipated benefits for both disabled person and carer must be addressed. With this information the disabled person/carer can take an active part in the decision making process. Decisions taken as a result of these discussions generally involve compromise of varying degrees. From the legal and service audit points of view, it is advisable that any compromise is noted, together with the reasons, in the disabled person’s record. Such a record is also useful in monitoring the effectiveness of interventions and the circumstances and conditions under which they were made. Resource monitoring can be achieved and unmet needs recognized by recording this information.

Physical examination and measurement Whilst relevant information is required from all domains, the focus of this assessment is the physical condition of the individual. The purpose of the examination is to provide a physical profile of the disabled person in terms of positive factors (ability) and negative factors (secondary complications) as indicated in Figure 5.1, from which the physical status is determined. The examination provides the data to inform decisions and make comparisons at review. The same data also enables evaluation of the effectiveness of interventions in the physical domain. It is imperative, therefore, that all the components of the profile accurately reflect the physical condition and relate to the issues that can realistically be addressed or modified, that is, they are valid. In addition to being valid, they must be reliable and sensitive to the degree of change anticipated. The measures used should be practical for use in the clinical setting. While this particular assessment as a whole has not been formally tested with respect to reliability and validity, most of the components have face (obvious) validity with respect to content. Components of the physical profile are: Positive factors (level of the disabled person’s ability)

• Posture

(i) ability (ii) quality Range of active movement • Functional independence. •

Negative factors (incidence and magnitude of secondary and associated complications)

• Contracture/deformity • Tissue damage/pressure ulcers • Infections: respiratory or urinary • Pain/discomfort • Positive neurological features, e.g spasticity. Positive factors Posture A comprehensive measurement of postural ability and the strategies used to gain stability is essential as these have a profound influence on function and on the development of secondary complications. Ability is measured according to a modified version of an original scale devised by Noreen Hare (Hallett et al 1987) and further developed at Chailey Heritage (Mulcahy et al 1988, Pountney et al 1990). The Chailey Heritage version of the scale has proved reliable and valid when used in children with cerebral palsy (Pountney et al 1999). The version described here has been modified to more aptly reflect postural ability in disabled people with the more severe and complex conditions, including those with static and deteriorating conditions. It is designed to measure the quality as well as the quantity of postural ability, as it is often this alone that may be altered.

Postural ability

The level of postural ability is graded in lying, sitting and, where appropriate, in standing, in all positions without support other than that necessary to prevent falling. The disabled person is: Level 1 — unplaceable in the position specified. Level 2 — placeable with support. Level 3 — able to maintain position when placed but cannot move. Level 4 — able to move forwards and backwards within the base. Level 5 — able to move laterally within the base, reach/lean sideways. Level 6 — able to move out of base but not return to original position. Level 7 — able to move into and out of base position. Levels 1 and 2 relate, in fact, to people with little or no postural ability.

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Quality of posture Quality of posture is examined at the same time that level of ability is graded. It is important to know not only what postural ability a disabled person has but how it is achieved. Quality is measured by considering the alignment of body segments relative to each other and to the supporting surface and scoring each component. Besides indicating the extent of asymmetry, measuring quality of posture provides valuable information about the strategies used by the disabled person to balance and stabilize the body in a given position. Quality of posture is quantified relative to the normal anatomical alignment for the given base position. For example in sitting, 1 point is scored if each of the following is achieved and 0 if not achieved. A 1⁄2 is scored if achieved on one side only, e.g. one arm resting by the side.

• Trunk is symmetrical. • Head is midline. • Lower limbs are separated with hips, knees and ankles in mid-position.

• Feet are flat on floor. • Arms are resting by side. • Weight bearing is symmetrical. In lying and standing the items scored are similar but with lower limbs extended instead of flexed. Some assessment tools have attempted to measure quality of posture and movement (Boyce et al 1990) but these have limited use with the more severely disabled person because the ‘floor’ threshold is too high, that is the scale does not reach the very low level of ability found in the more serious conditions. Measurement of postural ability and quality must always be considered as separate components. First ability is measured, then quality, thus it is possible to have a high level of ability with low quality as, for example, the person who is able to change his position independently but may have a severe scoliosis, and vice versa.

comprehensive; it is used as a means of identifying movements that have the potential to be functionally useful. For example, if it is found that the disabled person has full flexion of his elbow and can take his hand to his mouth but is not currently eating independently, the reason for this can be investigated. There may be very good reasons why independent feeding is not occurring, such as significant tremor, or such weakness that the weight of a cup or spoon renders the movement functionally useless. Range of active movement is measured as follows: 0 1 2 3 4 5

= no movement = movement initiated but no significant range = movement into first half of normal range = movement into second half of normal range = movement completed with effort = movement completed without effort but not normal, e.g. tremor 6 = movement completed normally. If the range of movement is limited by contracture the end points are noted in degrees. For example, if full extension at the elbow is limited by a flexion contracture of 90 degrees but flexion is complete in inner range, with effort say, the score would be 4 (from 90 degrees). If desired, an indication of strength of movement can be gained by adding a known weight to performance. This is particularly useful when evaluating and reviewing people with changing conditions. Active movements are measured with the disabled person in his current support. Thus the measure provides for valid and realistic comparison after any change in support or other intervention or treatment. It is essential to bear in mind that the purpose of this part of the assessment is not a comprehensive active movement analysis but rather the identification of a potentially useful movement in people with, usually, very limited movement ability. If more information about active movement is required then this section can be expanded to include additional movements.

Active movement Rather than attempting to assess the complete range of movements in all joints, a selection of potentially useful movements is measured. Examination of active movement, therefore, will not be fully

Functional independence There are many existing validated scales of functional performance; most have been comprehensively described in Wade (1996) together with


their use and limitations. Some are measures of disability while others measure handicap, (Disability and Handicap being defined according to ICIDH, WHO 1980), for example Disability FIM/FAM (Granger et al 1993); Rivermead Motor Assessment Scale (Lincoln & Leadbitter 1979); Barthel Index (Mahoney and Barthel 1965). It is not necessary to describe these scales here. It is important only to point out that they were designed for different purposes and a different population. Further, most are insufficiently sensitive to the small changes that may be expected in individuals with the severest conditions, therefore care is needed in choosing the most appropriate measure.

Negative factors Measures in this section are used to identify the existence and magnitude of secondary complications. These are used to establish the physical problems and constraints related to body alignment.

Contracture and deformity Contractures may be measured using standard forms of goniometry. However, such methods are time consuming and impractical for general clinical use. In clinical practice, where a high degree of accuracy is not important, there is some evidence to show that the trained practitioner is able to make sufficiently accurate visual estimates, especially in the larger joints (Porter 2004, Somers et al 1997, Youdas et al 1991). The method suggested for recording range of movement is the neutral-0 method (Ryf & Weymann 1999). This method is simple and reduces ambiguity when communicating results to other professionals. In order to facilitate measurement as much as possible, it is advisable to use easily accessible anatomical points while recognizing that the result may not measure true range but will be more reliable for comparative purposes. At the hip joint, for example, taking a straight line from the anterior superior iliac spine (ASIS) to the inner border of the patella represents the midline (zero) between abduction and adduction. Deformity It should be noted that the usual anatomical points might be difficult to find in the disabled person with significant deformity.

Coracoid process

Asis a)

Figure 5.3

b)

Measurement of trunk symmetry.

Trunk symmetry is established using a standard tape to measure distance, vertically and diagonally, between the corocoid process and the anterior superior iliac spine (ASIS) as shown in Figure 5.3. This method is most useful when evaluating a predominantly single curvature of the spine but is less so when a double curvature is present. If the corocoid process is difficult to find, as is likely in disabled people with protracted shoulders or obesity, then the anterior aspect of the accromium process may be substituted. (Whenever a change is made to standard procedure it must be noted in the record to enable valid comparison at review). Photographs taken of the marked spine as in Figure 5.5 greatly assist assessment of curvatures and serve as a useful comparison provided that subsequent photographs are taken under the same conditions. (Written consent for photographs must be obtained.)

Tissue damage/Decubiti Signs of tissues under stress from sustained pressure and shear forces are indicators that the body posture is not adequately supported. This situation not only causes damage to the tissues but also is the source of pain and discomfort. Tissue damage is graded as follows: 0 = no damage 1 = skin redness that persists longer than 5 minutes 2 = blister or superficial skin breakdown 3 = underlying tissue involvement 4 = deep tissue/bone involvement 5 = deep tissue involvement with infection. The location(s) of the damage and the area, where possible, are recorded.

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Infections Respiratory infections

Inclusion of respiratory infections in assessment measures is justified on the basis that they are frequently associated with severe postural impairment and can often be addressed using appropriate management of posture, position and postural drainage. The vulnerability of the individual to infection is assessed noting the effectiveness or not of the cough reflex, any difficulty in swallowing and/or aspiration or reflux as in percutaneous gastrostomy (PEG)-fed people. The most reliable measure of improvement or deterioration is the frequency of infections within a given period, taking care to avoid seasonal bias, for example, infections tend to occur more frequently in winter than in summer.

Urinary tract infections

Urinary tract infections are another frequent complication encountered in the severely disabled person. They are associated with impaired bladder function and the methods of managing incontinence, in particular catheterization. Inactivity and incomplete bladder drainage are predisposing factors. Bladder drainage may be influenced by changes of position, particularly standing, therefore incorporating standing, if appropriate, into the management regime may reduce the severity and/or frequency of urinary tract infections. As in respiratory infections, noting the number of infections in a given time period is an effective measure of change.

where communication is a problem. The grading used here is broad as estimation is subjective and crude and a broad scale will assist classification and increase reliability. 0 1 2 3 4 5

= no pain/discomfort = minimal discomfort/pain = awareness of some discomfort/pain = significant but tolerable = severe but tolerable for limited period = severe intolerable pain.

The location as well as the grade of the pain or discomfort is recorded. In addition, the situations under which this symptom is present, for example in bed, while seated, on movement, are also recorded as well as the factors that exacerbate the symptom and what, if anything, gives relief. Gibson & Andrews (2005) used pain drawings to record location and intensity in addition to VAS in a small group of wheelchair users. Subjective estimation is always a problem. A further difficulty lies where the disabled person is unable to give an opinion due to communication of cognitive deficit. It is then necessary to refer to others, preferably the primary carer, to estimate the presence or absence of these problems and the severity, if possible. It is generally found that when the disabled person is well known to the primary carer, for example a relative, estimates can be more readily relied upon, although caution must be exercised unless other signs, for example, skin redness or grimacing on a particular movement, support the perceived symptom.

Pain and discomfort These symptoms are often caused by problems that can reasonably be addressed by physical management, e.g. prolonged pressure and shear in localized load bearing areas or overstretched tissues. Unless others are obvious, such causes should be eliminated before embarking on other investigations. Pain and discomfort are graded within the same visual analogue scale (VAS) extending from 0–5, as the difference between pain and discomfort is taken to be that of magnitude. Self-report numerical scales have been proposed as the most valid and reliable method of pain evaluation but may be subject to bias (Robinson et al 1997). They are also difficult to use

Positive neurological features The validity of these signs of neurological impairment being considered in this category of secondary complications associated with the trauma/disease could be questioned, as they are in some cases the direct manifestation of neurological impairment, e.g. the rigidity in Parkinsonism. The features, however, tend to develop gradually and are influenced, to a greater or lesser degree, by many factors including the physical condition and posture of the individual, e.g., an infection or an unstable posture will frequently exacerbate the neurological signs. O’Dwyer et al (1996) suggest that spasticity in stroke patients may be a secondary


phenomenon in some cases, a view that is gaining ground (e.g Carr & Shepherd 2003) not only in relation to stroke. The symptoms can often be modified, at least in part, by managing the overall physical condition of the disabled person, particularly in relation to posture. It is suggested that the focus of attention should not be on classification of the specific sign (Scrutton 1998) but on how to manage it. In clinical practice, distinctions between rigidity and spasticity or choreic and athetoid movement are not easily made, particularly in severe and complex cases when a combination of symptoms is present. Measurement of these neurological signs presents problems for the assessor because of their variability in magnitude on a day-to-day basis and sometimes within 1 day. The Ashworth Scale (1964) or the modified version (Bohannon & Smith 1987) are commonly used methods of measuring spasticity, taking the resistance to passive movement as the measurable indicator. Thus the method is not valid in cases where changes in the mechanical properties of tissue have occurred (Carr & Shepherd 2003, Pope et al 2000 unpublished). It must be remembered that tissue changes commence within days when movement is restricted (Goldspink & Williams 1990). Therefore another method of evaluating spasticity is required. Instead of attempting to measure the symptom directly, the degree of the symptom’s interference with a physical management regime is graded. The justification for using this method is that intervention aims to modify or control the symptom so that it interferes as little as possible with the overall function and management of the disabled person. 0 = no symptom 1 = symptom controlled/little interference 2 = symptom partially controlled/moderate interference 3 = symptom completely uncontrolled/severe interference. Although subjective, the effect of intervention can be assessed in this way.

Neurological signs may be classified as both a problem and a constraint, as has been noted earlier in this chapter (p. 90).

Assessment procedure (This section should be read in conjunction with the Specialist Wheelchair Seating Guidelines, British Society of Rehabilitation Medicine (BSRM 2004) in which details of a standard approach to assessment are given, much of which applies here). For practical reasons the disabled person is usually seen in a clinic or hospital. It is advisable at times, however, to see the disabled person in home surroundings in order to see the environment and observe personal relationships, both of which play such an important part in securing a successful outcome. It is suggested in the guidelines that as much information as possible be gathered prior to clinic assessment. While this saves time in the clinic and allows some pre-appointment consideration of information, there is significant value in having an interview period immediately prior to examination of the disabled person. This is especially true if it is the disabled person’s first visit to the clinic, when the disabled person may be apprehensive or even afraid of what might happen. An interview provides the opportunity for the HCPs involved to explain the whole process and allows time for the disabled person and care provider, where appropriate, to relax and to be made comfortable. Those carrying out the interview also have time to observe personal relationships between the disabled person and the care provider. Besides, much information on posture and motor ability can be gleaned in this way. During the interview period the disabled person and care provider, if appropriate, are asked for their views and expectations, which are recorded. The taking of photographs or video may also be discussed and if agreed written consent given. Examination begins, if possible, with the disabled person in the support, bed or chair, which is customarily used. It is usually the armchair or wheelchair. The sequence in which the assessment is carried out will, of course, vary with the circumstances. A step by step sequence for the examination

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a)

Figure 5.4

b)

The diagram (a) illustrates the direction of bending and rotation of body segments identified in (b).

follows, commencing with the disabled person seated in his (wheel)chair. Examination of the presenting posture in a given position provides information relating to the adequacy of the current support (Pope 2002). Examination commences without prior correction of posture, with the orientation of the pelvis. Alignment of body segments relative to each other and to the supporting surface is noted in a prescribed order. Weightbearing areas are noted. This stage in the procedure provides valuable information concerning the strategies used by the disabled person to balance and stabilize in a given position. The findings may then be illustrated diagrammatically as in Figure 5.4. The active movement performed by the disabled person in his current support is examined and recorded, once again without altering the presenting posture. The disabled person is transferred or is assisted out of the seat onto bed or plinth. Immediately on transfer from the seat, the supporting components, i.e. seat, backrest, etc. are

examined carefully so that high-loaded areas (estimated in point 1 above) can be verified. On the plinth, the disabled person’s posture is corrected as much as possible and a minute or two is allowed to elapse for the posture to ‘settle’. If the disabled person has longstanding postural and mobility deficits the posture in lying will reflect that in sitting, that is, a ‘preferred’ posture will be evident (Pope 1991, see also p. 49). A similar examination of presenting posture is performed in supine lying (and prone if appropriate) and the ‘preferred’ posture may be represented diagrammatically as in Figure 5.4. Using the ability scale (see p . 91) the level of lying ability and quality of the lying posture is determined. Grading of active movement in lying follows at this stage. Trunk symmetry is measured in supine lying and held, if necessary, in the most corrected position since the degree of tissue adaptation is being sought, not that of the ‘preferred’ posture.


estimated, together with the influence of simulated support. Where possible and appropriate the same examination procedure is carried out for supported or unsupported standing. That is, the presenting posture is analysed and the level of ability together with quality of posture is determined. Active movement possible while standing is assessed. Aids used and type of support are noted. If the disabled person is able to walk the gait is analysed in terms of equality of stride length, loading, stability and distance travelled. Any aids used such as sticks are noted. An assessment tool such as the Rivermead Mobility Index may be used with the more ambulant person (Lennon & Johnson 2000). On completion of the physical examination the data is analysed and the physical problems and constraints are identified. These problems and constraints are then considered in conjunction with other relevant information, e.g. social, environmental information gathered during pre-assessment and interview stages of the process and are followed by:

• Identification Figure 5.5 Small stick-on spots are used to highlight spinal curvature.

•

Joint ranges of movement are measured, usually in supine but possibly in prone or side lying depending upon the circumstances. If appropriate, the tissues are examined for signs of high loading/damage, etc. and recorded accordingly. The disabled person is then seated on the edge of the plinth, bed or stool. It is necessary to record which of these is used. Ability and quality of posture are determined and recorded. Stick-on spots on the spinous processes are useful in highlighting any spinal curvatures (Fig. 5.5). It is usual at this time to investigate and, if possible, simulate the support required to stabilize the disabled person’s posture. During the examination process any positive neurological signs will be observed and the parts of the body affected will be identified and recorded. The magnitude of any signs will be

• •

of the overall problems and constraints. Discussion of problems, constraints and objectives with the disabled person and others involved. Recommendations are made. Disadvantages as well as the anticipated benefits of intervention are carefully explained. The disabled person (and/or care provider) is then in a position to make informed decisions with respect to the recommendations made by the HCPs. Invariably compromise is necessary.

Short-, medium- and long-term goals are agreed that can be used to evaluate the efficacy of the intervention.

Data presentation As the physical data is quantified it may be presented as a total score or the total for each section can be presented separately in the form of a bar chart. The sections may be categorized according to

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the positive and negative aspects of the physical profile (p. 91). When charting the joint ranges of movement the raw data may be presented for each range or alternatively the limitation could be classified as mild = 1, moderate = 2, severe = 3. Whether a contracture falls into one classification or another will depend upon the particular circumstances, for example, a lack of dorsiflexion with the knee extended may be considered mild for the sedentary individual but is a severe constraint for the ambulant individual. The total score will give the overall condition of the disabled person. The sectional scores are more useful as it is possible to see at a glance where, and if, change has taken place. Presentation of data in this way is useful for comparison, provided that the examination has been carried out under the same conditions and that the same number of sections are used for comparison. It must also be borne in mind that qualifying notes are invariably necessary and should be encouraged when carrying out an assessment, therefore reliance on the figures alone does not necessarily give the whole picture.

SECTION 2 OUTCOME Definition and perspective It was noted at the beginning of this chapter that there are two outcomes related to the assessment of the disabled person with severe and complex disability. The first outcome is the prescription and action that results from the assessment process. The second outcome is the longer-term effect of the intervention/action that has or, just as importantly, has not been carried out. The first outcome is the subject of other chapters in this book and will not be discussed further here. This section concentrates on the second type of outcome. There is a great deal of pressure on professionals in the current, evidence-based healthcare climate, to measure outcome in order to be able to assess the efficacy of interventions and to justify use of scarce resources. Measurement of outcome is essential in any case and complements the assessment process. It is difficult to see how one

can have one without the other. There are, however, a number of difficulties. Outcome may be viewed from a number of different perspectives: the disabled person, the care provider, the clinician, the resource manager, and others who may be involved with the disabled person’s interests. These perspectives are not mutually exclusive but should complement each other, e.g., the disabled person may find that as a result of being more comfortable he is able to go out for longer excursions, while the clinician sees that the interventions prescribed to ease the discomfort have been successful. If the disabled person’s outcome alone was noted, the means of achieving it could go unrecognized, whereas if the clinician’s outcome alone was noted, the most important effect, that on the disabled person, could be missed.

Measurement There is much debate and confusion in relation to the measurement of outcome. In the first instance this is possibly due to confusion between assessment measures and outcome measures. Further, there may be a lack of recognition that the measure chosen will depend upon the particular viewpoint. Lettinga et al (2002) discuss the difficulties in using outcome measures, albeit validated and reliable, for a comparison of the effectiveness of differing treatment approaches in stroke rehabilitation.

The disabled person’s perspective Nowadays, there is a greater awareness of the necessity of involving the disabled person and care provider in the process of assessment, making recommendations and evaluating outcome. While welcoming this change in attitude, the field of severe and complex disability presents particular problems where the disabled person’s view on outcome is sought. Without doubt a major difficulty in this field is the inability of the disabled person, in many cases, to communicate his wishes. This problem may arise as a result of limited cognition or ability to express a need or wish. In such situations it is usually left to the primary care provider(s) to act as advocate for the disabled person. Decisions based solely or largely on the opinion of others

Section 2 Outcome

require caution, but in many cases there is little alternative. A further but not infrequent difficulty arises where communication itself is not the problem but the disabled person abdicates the goal setting to the clinician (Kelly 2001, unpublished MSc thesis) reflecting the passivity in many disabled people with long-term conditions. In addition, many outcome measures designed to measure Quality of Life (QOL) in the disabled person are time consuming and often include too many irrelevant details, being heavily weighted towards functional independence and social integration. They are, therefore, unsatisfactory when used in situations of severe and possibly deteriorating neurological conditions and with people who have cognitive impairment and those unable to communicate. QOLs may be generic, as in the SF-36 (Ware et al 1993), or disease specific, for example the ALSAQ-40, which at least has the advantage of evidence for validity and reliability when used in people with motor neurone disease (Jenkinson et al 1999). In an attempt to overcome the difficulties already noted, a number of Goal Centred Measures have been devised, such as, TELER (Le Roux 1993), COPM (Law et al 1991), SMART (Cott & Finch 1990) and GAS (Gordon et al 1999). Each of these measures has its exponents and is considered to be suitable for use in specific but varying situations. It is important that the measure chosen is suitable for the group under consideration, taking into account the specific difficulties of using the measure with that particular group.

These criteria are relatively easy to apply in the clinical setting. However, time is needed at the end of the assessment process to set the goals according to the recommended criteria and later to follow them up at the stated time.

SMART criteria

Of course, an unexpected outcome may also be negative. A useful preliminary to goal setting is to ask the disabled person and/or care provider at the beginning of the assessment process what he considers to be his difficulty and what he wishes to gain from seeing the clinician(s). These comments should be noted and are a useful guide to the more formal goal setting at the end of the assessment process. The outcome measure chosen must be reliable, appropriate and measure what it is meant to measure, i.e. it must be valid. It should be sufficiently responsive to the level of change

Given the particular and usually more complex circumstances associated with the more disabled person, the SMART criteria provide a method of evaluating outcome. The criteria by which outcome is judged are related to agreed goals. These goals must be: Specific to the individual Measurable Achievable Relevant to the situation, and achieved within a set Time frame.

The Goal Attainment Scaling measure (GAS) The Goal Attainment Scaling (GAS) system is another method of measuring outcome that is gaining ground in the field of severe and complex disability. The method provides a structured framework that allows quantification of outcome and comparison of data although the goals may differ between individuals. It is therefore more useful for audit and in research. It is, perhaps, a more complex system to set up and requires computer technology for it to be useful in everyday practice. Once in place, its usefulness is becoming more and more recognized (Ashford 2005, Gordon et al 1999, Turner-Stokes 2005). Whatever the outcome measure chosen, a section must be incorporated for retrospective evaluation, that is, an outcome that was not anticipated. This feature is a particular necessity when assessing outcome in the more disabled population where expectations are often much reduced. The following example illustrates the point. Resolving a problem of discomfort through provision of appropriate support may enable a disabled person to go to the theatre.

• Appropriate support is the intervention and goal of the clinician.

• Comfort is the goal of the disabled person. • A visit to the theatre is the unexpected outcome.

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expected, practical for use in the clinical setting and be acceptable to those involved. As a final note, accurate recording in a systematic way can be useful in evaluating outcome, complementing clinical trials in informing practice (Freeman et al 2005).

Time for assessment and goal setting The objection is often raised that insufficient time is available during the usual clinic appointment to carry out a fully comprehensive assessment. When the group consists of people with complex conditions the assessment process will necessarily be detailed and sometimes prolonged. Unless time is made to collect all relevant information there is little chance of a satisfactory outcome. Without sufficient time the result is frustration and dissatisfaction all round with much waste of time and, usually, money. In these days where the demand for healthcare is high, equipment expensive and resources limited, the HCP must act responsibly with respect to these issues. Much unused equipment is lying in cupboards and sheds, etc. as a result of inappropriate recommendation resulting from inadequate assessment and goal setting. In support of this view, Phillips & Zhao’s survey (1993) in the US, found almost 30% of assistive technology equipment was abandoned.

SUMMARY Assessment is truly the first step in rehabilitation. The importance and critical nature of appropriate assessment for the satisfactory resolution of presenting problems cannot be overestimated. It is simply not possible to prescribe appropriate intervention without having all the relevant information. In Section 1 a method of assessment was described that is designed and devised specifically to meet the needs of the disabled person with severe and complex disability. In Section 2 the necessity of evaluating not only the efficacy of the intervention itself but also the effect of the intervention on the disabled person’s/ care provider’s lifestyle was emphasized. Assessment and outcome measures were considered to be different but complementary and essential. The difficulties in the application of outcome measures to such severely disabled individuals were outlined and the measurement of outcomes has been explored. It is clear that work is required to establish reliability, validity and acceptability of some aspects of the methods described for application to this relatively neglected and difficult specialist area of work.

REFERENCES Ashford S 2005 Commentary. Physiotherapy Research International 10(1): 57–58 Ashworth B 1964 Preliminary trial of carisoprodol in multiple sclerosis. Practitioner 192: 540–542 Bohannon RW, Smith MB 1987 Interrater reliability of a modified Ashworth Scale of muscle spasticity. Physical Therapy 67: 206–207 Boyce W, Gowland C, Hardy S et al 1990 Development of a quality of movement measure for children with cerebral palsy. Physical Therapy 70: 820–832 BSRM 2004 Specialised wheelchair seating: National clinical guidelines. Published by the British Society of Rehabilitation Medicine Carr J, Shepherd R 2003 Measurement. In: Carr J, Shepherd R Neurological rehabilitation, 4th edn. Butterworth Heinemann, Edinburgh, p 47–68 Cott C, Finch E 1990 Goal setting in physiotherapy practice. Physiotherapy Canada 43(1): 19–22 Crow JL, Harmeling BC 2002 Development of a consensus and evidence-based standardised clinical assessment and

record form for neurological conditions: The neuro dataset. Physiotherapy 88(1): 33–46 Duckworth M 1999 Outcome measurement selection and typology. Physiotherapy 85(1): 21–27 Freeman JA 2002 Assessment, outcome and goal setting in physiotherapy practice. In: Edwards S (ed) Neurological physiotherapy. Churchill Livingstone, Edinburgh p 21–34 Freeman JA, Hobart JC, Playford ED et al 2005 Evaluating neurorehabilitation: lessons from routine data collection. Journal of Neourology, Neurosurgery and Psychiatry 76: 723–728 Gibson J, Andrews AO 2005 Pain experienced by electricpowered chair users: a pilot exploration using pain drawings. Physiotherapy Research International 10(2): 110–115 Goldspink G, Williams P 1990 Muscle fibre and connective tissue changes associated with use and disuse. In: Ada L, Canning C (eds) Key issues in neurological physiotherapy. Butterworth-Heinemann, Edinburgh, p 197–218

References

Gordon JE, Powell C, Rockwood K 1999 Goal attainment scaling as a measure of clinically important change in nursing home patients. Age and Aging 28(3): 275–281 Granger CV, Cotter AC, Hamilton B et al 1993 Functional assessment scales: A study of persons after stroke. Archives of Physical Medicine and Rehabilitation 74: 133–138 Hallett R, Hare N, Milner AD 1987 Description and evaluation of an assessment form. Physiotherapy 73(5): 220–225 Hammond R 2000 Evaluation of physiotherapy by measuring outcome. Physiotherapy 86(4): 170–172 Jenkinson C, Fitzpatrick R, Brennan C et al 1999 Evidence for the validity and reliability of the ALS assessment questionnaire: ALSAQ 40. Amyotrophic lateral sclerosis and other motor neurone disorders 1: 33–40 Kelly M 2001 A pilot study to evaluate the reliability and validity and patient acceptability of the Canadian Occupational Performance Measure among assistive technology users. Masters thesis (unpublished), University of Oxford, Kellogg College, UK Law M, Baptiste S, Carswell–Opsoomer A et al 1991 Canadian occupational performance measure. Canadian Association of Occupational Therapy Publications, ACE, Toronto Lennon S, Johnson L 2000 The modified Rivermead Mobility Index: Validity and reliability. Disability and Rehabilitation 22(18): 833–839 Le Roux AA 1993 TELER: The concept. Physiotherapy 79(11): 755–758 Lettinga AT, Reynders K, Mulder TH et al 2002 Pitfalls in effectiveness: a comparative analysis of treatment goals and outcome measures in stroke rehabilitation. Clinical Rehabilitation 16(2): 174–181 Lincoln NB, Leadbitter D 1979 Assessment of motor function in stroke patients. Physiotherapy 65(1): 48–51 Mahoney FI, Barthel DW 1965 Functional evaluation: the Barthel Index (BI). Maryland State Medical Journal 14: 61–65 McDonald R, Surtees R, Wirtz S 2003 A comparison between parents’ and children’s views of their child’s individual seating system. International Journal of Rehabilitation and Research 26(3): 235–243 Mulcahy CM, Pountney TE, Nelham RL et al 1988 Adaptive seating for the motor handicapped. Problems, a solution, assessment and prescription. Physiotherapy 74(10): 531–536 O’Dwyer NJ, Ada L, Neilson PD 1996 Spasticity and muscle contracture following stroke. Brain 119: 1737–1749 Phillips B, Zhao H 1993 Predictors of assistive technology abandonment. Assistive Technology 5: 36–45 Pope PM 1988 A model for evaluation of input in relation to outcome in severely brain damaged patients. Physiotherapy 74(12): 647–650 Pope PM 1992 Management of the physical condition in people with chronic and severe neurological pathologies. Physiotherapy 78(12): 896–903

Pope PM 2002 Posture management and special seating. In: Edwards S (ed) Neurological physiotherapy. Churchill Livingstone, Edinburgh p 189–218 Pope PM, Bowes CE, Tudor M et al 1991 Surgery combined with continued post–operative stretching and management of knee flexion contractions in cases of multiple sclerosis: A report of six cases. Clinical Rehabilitation 5: 15–23 Pope PM, Ainsworth K, Wade D 2000 unpublished. Control of position in supine lying: The effect on loading and posture in multiple sclerosis subjects with spasticity. A pilot study. Porter D 2004 Development of deformity in children with cerebral palsy. Doctoral thesis. Dundee University, Scotland Pountney TE, Mulcahy CM, Green EM 1990 The early development of postural control. Physiotherapy 76(12): 799–802. Pountney TE, Cheek L, Green E et al 1999 Content and criterion validation of the Chailey levels of ability. Physiotherapy 85(8): 410–416 Robinson ME, Myors CD, Sadler IJ et al 1997 Bias effects in 3 common self report pain assessment measures. Clinical Journal of Pain 13(1): 74–81 Russell D, Rosenbum P, Cadman D et al 1989 The gross motor function measure: A means to evaluate the effects of physical therapy. Developmental Medicine and Child Neurology 31: 341–352 Ryf C, Weymann A 1999 Range of motion–A O–neutral–0 method: Measurement and documentation. Thieme, Stuttgart Scrutton D 1998 Imprecision? Precisely! Editorial, Developmental Medicine and Child Neurology 40: 75 Somers DL, Hanson JA, Kedzierski CM et al 1997 The influence of experience on the reliability of goniometric and visual measurement of forefoot position. Journal of Orthopaedic and Sports Physical Therapy 25(3): 192–202 Turner–Stokes L 2005 The National Service Framework for long–term conditions. Presentation, Winter Meeting, Society for Research in Rehabilitation, January 11th Wade DT 1996 Measurement in neurological rehabilitation. Oxford University Press, Oxford Ware JE, Snow KK, Kosinski M et al 1993 SF–36 Health Survey: manual and interpretation guide. The Health Institute, New England Medical Centre, Boston, Massachusetts WHO 1980 ICIDH International classification of impairments, disabilities and handicaps. World Health Organisation, Geneva WHO 1997 ICIDH–2 International classification of impairments, activities and participation. A manual of dimensions of disablement and functioning. World Health Organisation, Geneva Youdas JW, Carey JR, Garrett TR 1991 Reliability of measurements of the cervical spine range of motion: Comparison of three methods. Physical Therapy 71(2): 98–104

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6

Building a stable posture

INTRODUCTION CHAPTER CONTENTS Introduction 103 Aims and objectives 103 Principles of support 104 The process of building a stable posture 104 Section 1 Building a stable posture in lying 105 Indications for support in lying 105 Rest and sleep positions 105 Therapeutic lying positions 110 Provision of lying support equipment 113 Section 2 Building a stable posture in sitting 113 Support in sitting 113 Different configurations and orientations 119 Accessories used in conjunction with standard seating systems 128 Guidelines for support in sitting 131 Section 3 Building a stable posture in standing 132 Supported ‘therapeutic’ standing 133 Therapeutic standing devices 134 Orthoses used for joint stabilization 137 Additional considerations 139 Situations requiring caution 140 Checklist on prescription of any equipment 141 Summary 141 References 147

The inherent instability of the body system was discussed in Chapter 1. It is not surprising that when the mechanisms providing stability are impaired, provision of adequate support poses such challenges. The intrinsic control of body posture is an extremely complex, highly synchronized system. When control fails, under the pull of gravity, the body will bend and buckle, which in turn, gives rise to the development of secondary complications that further disable an already disabled person (see Ch. 3). The muscles provide the greatest contribution to stability of the body system. External support is a poor substitute for muscle control. Nevertheless, much can be done to facilitate remaining function and minimize secondary complications. By definition, external support is restrictive to a greater or lesser degree and compromise is often necessary, challenging the healthcare professional (HCP) to make the best compromise between support and function. Thorough assessment is essential before consideration of any support. Without relevant information from all domains mistakes can be made, sometimes very costly ones not only in financial terms.

Aims and objectives In all aspects of physical management in severe and complex disability the aims are to:

• Facilitate remaining ability.

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• Minimize secondary complications. • Ease the care load.

Principles of support

Asymmetry of the presenting body posture is corrected if flexible. Where asymmetry is established, it should be accommodated. Weight–bearing areas are identified to determine: (a) vulnerability to tissue damage, (b) strategies used by the disabled person to gain additional support, for example, using the arms to prop the trunk, and (c) which body segment cannot move because it is load bearing, e.g. the head in lying (see p. 111). Function, in general, takes precedence over posture. Where there is a conflict between an aligned posture and the independence of the disabled person, the latter takes priority. Compromise is usually possible, and may involve attention to other aspects of the physical management regime (see Ch. 10) for the purpose of ameliorating the deleterious effects of an advantageous postural strategy.

These principles apply to any support given, whether it is lying, sitting or standing:

The process of building a stable posture

The objectives in providing support to body posture whether in lying, sitting or standing are to:

• Align and stabilize body segments relative to each other and to the supporting surface. • Control the forces acting on the body such that sustained localized high forces are avoided. • Provide a functional posture. • Facilitate comfort.

Objectives may conflict, e.g. the support needed to secure an aligned, stable posture may impede rather than facilitate functional activity, or may increase the effort for the care provider.

The pelvis is the keystone of the body structure. The position and orientation of the pelvis directs the postural attitude of the body above and below it (Cook & Hussey 2002, Reid 1995, Reynolds 1978). It is a fundamental principle of building a stable posture that the process begins with securing the most symmetrical position of the pelvis. Problems related to the support of other parts of the body cannot be addressed unless a correctly positioned pelvis is secured first. Gravity is used to secure postural stability, rather than attempting to secure the posture against gravity. In essence this means organizing the postural configuration such that the pull of gravity assists in maintaining the posture. This does not mean that straps and harnesses should never be used; these devices are useful as secondary support to maintain a stable posture rather than as the primary support to hold the person up. Adequate and appropriate support is dependent upon identification of the direction of the bending and axial rotations occurring within and between body segments. Without this information it is not possible to know how and where to place support.

In building a stable posture the aims should be kept in mind. The principles are incorporated into the process in the following way. The body is considered in terms of segments and linkages for simplicity (see Ch. 1). Movement of the linkages is controlled by support applied to the segments, e.g. movement of the hip joint is stabilized by control of the pelvis and thighs. The pelvis is secured first. The rest of the body is then aligned relative to the pelvis. When asymmetry or limitation of joint range is significant and established, the degree of deviation from the normal is accommodated. The risk of tissue damage is minimized by increasing the area of support and minimizing the shear forces that result from a tendency to slide. Appropriate support is given to the trunk to ‘offload’ weight-bearing segments where movement is desired, e.g. the arms in sitting. Alternative postural configurations and orientations are utilized when the erect posture cannot be stabilized.

Section 1 Building a Stable Posture in Lying

The support is appropriate to the orientation or configuration, e.g. leaning forwards or tilted backwards in sitting, require quite different support. The contours of the support are made compatible with the contours of the body wherever possible, bearing in mind that the resultant enhanced stability may mean interference with function, e.g. a contoured seat may compromise transfers. Support is applied in the direction opposing the bending and rotation occurring within the body system. This point applies also to any straps used; the pull of the strap should be in the opposite direction to that of the particular bend or rotation being controlled. For example, if the pelvis has a tendency to rotate towards the right side the pelvic strap is fastened with a pull to the left. An holistic approach is taken to avoid compromising functional ability. Best compromise is achieved by considering recommendations within the context of the disabled person’s condition and lifestyle.

SECTION 1 BUILDING A STABLE POSTURE IN LYING Support in lying is integral to the management of the disabled person who is unable to change position himself and should be introduced as early as possible. Correct positioning and support is now considered an important aspect of neonatal care of the pre-term infant (Association of Paediatric Chartered Physiotherapists (APCP) 2001). While much can be done during the day the disabled person generally spends many hours in bed and significant damage can occur in lying. Indeed it is highly probable that many asymmetries in body posture originate in lying and are then compounded in sitting. Asymmetries in lying, evident in babies, were initially recorded by Fulford & Brown (1976) in children born with posture and movement deficit and endorsed in recent work (Porter 2004). In the 1980s, it was recognized by the rehabilitation team at the Royal Hospital for Neuro-

disability in London, that unless the posture of the disabled person in lying/sleeping was addressed, the development of secondary complications could not be modified. The necessity for support in lying became an essential component of postural management (Pope 1985a).

Indications for support in lying The indications for support in lying are:

• Inability to change position. • Postural asymmetry sustained

during long periods with tissue adaptation. • Spasms/spasticity are dominant, ‘driving’ a particular posture. These indications must be considered in conjunction with other criteria before recommendations are made (see p. 112). Support of posture in lying varies from simple means, using cushions and pillows, to sophisticated devices that more rigidly control body posture. The method of support chosen will depend upon the circumstances and lifestyle of the disabled person and those looking after him. The equipment used will vary with local manufacture and provision. In most cases it is advisable to begin with the simplest means of control. Only if this is not satisfactory should more complicated methods be considered. The reader is reminded that the equipment illustrated is not prescriptive. Any support is satisfactory if it fulfils the aims and objectives, with comfort and ease of use having priority. Support can be given in the prone, supine or side lying positions. An arbitrary distinction has been made here between support of posture and position for rest and sleep and what might be called ‘therapeutic’ positions, i.e., positions for facilitating movement and activity. However, these situations are not mutually exclusive as each can be used in either or both situations.

Rest and sleep positions It is generally wise to provide support in the position preferred by the disabled person, if this can be arranged. It is essential that the disabled person sleeps as well as possible, a situation no different from that of the non-disabled person.

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a)

b)

Figure 6.1 The unsupported supine lying ‘preferred posture’ (a); T roll aligns and supports body segments relative to each other and to the supporting surface (b).

Support in supine lying The following examples illustrate the type of support suggested for the person who can be placed in reasonable anatomical alignment. With care and adjustment of these basic methods, significant contracture can be accommodated. In the severest deformities specifically designed equipment may be the most appropriate (see p. 111).

Use of a T roll

Figure 6.1(a) illustrates a posture frequently encountered in a variety of people with neurological pathologies, i.e. the preferred posture (see Ch. 3) is evident with rotation within the trunk and windsweeping of the lower limbs. A T roll provides a relatively simple means of support. The roll is placed under the knees and the perpendicular bar is rolled forwards between the thighs (not the knees) (Fig. 6.1(b)). The T roll controls posture and stabilizes position as follows:

• Realigns

the pelvis with the thorax and the lower limbs with the trunk. • Holds abduction and external rotation of both

legs. The external rotation relieves pressure on the medial aspect of the thighs as the legs are rolling away from the central roll. As well as abducting the adducted leg, the degree of abduction in the already abducted leg is reduced. • Relieves the stressed/stretched tissues and elongates the relaxed/shortened tissues. • Controls spasms/spasticity in the legs without restricting movement. On relaxation following a spasm, the legs return to the corrected position. Even quite rigid lower limbs will relax, given regular use of the roll over a period of time. • Supports the legs in mid-flexion which tilts the pelvis backwards, thus increasing the area of support and transferring some of the weight from pelvis to thorax (Pope et al 2000, unpublished pilot study). Further pressure relief on the sacrum can be achieved by placing a pillow under the roll, thereby increasing the tilt of the pelvis. In Figure 6.2(a) the young man presents with a posture typical of brain damage. This young man


a

b

Figure 6.2 Asymmetrical posture in (a) is modified using a T roll (b). Complete realignment of the legs with the trunk is not possible due to heterotopic ossification in both hips. A pillow under the right side of the trunk transfers weight to the opposite side.

is not conforming to the supporting surface; the asymmetry and reduced weight-bearing areas predispose to secondary complications. Although heterotopic ossification at the hip joint prevents complete anatomical realignment it is possible to support optimum alignment using the T roll (Fig. 6.2(b)). A pillow has been placed under the right side of the thorax, to transfer weight over to the left side. (A pillow used in this way may be secured by tucking it under a sheet placed across the bed). In Figure 6.3(a) the preferred posture of the little girl indicates that asymmetry is well established and is similar in prone (Fig. 6.3(b)). She is conforming to the supporting surface, but not as one might wish. (Conformity with the supporting surface is only one aspect in describing postural ability; the particular posture must be qualified (see Ch. 5)). Figure 6.3(c) shows the increased alignment

achieved by use of the T roll. Although complete correction has not been achieved the posture is well controlled; stress on the tissues is relieved. If pursued on a regular basis, progression of contracture can be slowed if not arrested altogether, some correction also being possible. Being less restrictive than some other forms of lying support, the T roll is usually well tolerated.

Important points when using a T roll The following points must be addressed, otherwise the T roll will be less effective or may cause tissue damage through localized high pressures.

• The diameter of the roll must be appropriate for

the height of the person. In some cases a small roll may substitute for a larger one by placing a pillow under the roll. • The lower legs must be supported with

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a

Figure 6.3 The ‘preferred posture’ of the young child in supine (a) is reflected in prone (b) and corrected in (c).

a small cushion to raise the feet clear of the bed to relieve pressure from under the heels and behind the knee (Fig. 6.1(b)). • Sufficient knee extension is required to enable the back of the knee to rest on the horizontal section of the T roll. If extension is insufficient the knees will stand proud of the roll rather than resting on it, with the result that alignment will not be controlled and localized high pressure may develop where the roll is in contact with the lower leg (calf muscle) area. If knee extension is severely restricted, i.e. 90 degrees or less between thigh and lower leg, the use of the supine position is not recommended, as it is difficult, if not impossible, to control the posture adequately. • Where abduction rather than adduction is a problem, a strap from the central piece across

b

the thighs and velcroed to each side of the supporting roll will contain the abducted lower limbs (Fig. 6.4). • The addition of a strap will allow a person to move around without disturbing postural alignment, a point of advantage especially with children. • Where reflux is a problem, it is usually necessary to raise the upper trunk. However, doing this introduces a tendency to slide creating shearing between the tissue layers that must be countered. In addition, any tendency to lateral flexion of the trunk is more difficult to control on an incline and is a classic example of how resolution of one problem can create another. Pillows tucked underneath a sheet placed across the bed will help secure the position.


Figure 6.4 A strap holds the roll in place and can be used to prevent excessive abduction and/or permits movement without dislodging the roll.

c

Figure 6.3

(cont’d) (c).

Support in side lying

Contraindications for use of supine lying The main contraindications to positioning in a supine posture are:

• Where there is risk of aspiration from vomiting or

reflux. • Severe opisthotonus (total extension) usually evident following catastrophic brain injury, but occasionally encountered in people with late stage multiple sclerosis. • Severe kyphoscoliosis that prevents stabilization and load distribution, although this may be possible with some supportive equipment in some cases (Goldsmith 2000). • Where the disabled person dislikes sleeping or being placed supine.

The side lying position is sometimes more acceptable to the disabled person than the supine position. It is an effective alternative where the supine position is contraindicated, when supported appropriately. Figure 6.5 illustrates use of a log roll to control and stabilize posture in side lying, maximizing weight distribution and facilitating comfort in that position. The procedure is as follows: Initially, a half-folded sheet is placed lengthwise across the bed or support. The disabled person lies or is placed on his side, with his trunk leaning slightly backwards, i.e. off the shoulder, with hips and knees flexed to 90 degrees or the maximum possible if flexion is limited. A soft pillow is tucked under the crosswise sheet. The sheet is then tucked tightly around and under

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Figure 6.5 The supported position in side lying using a log roll to stabilize and support the lower part of the body relative to the upper part. A pillow is used along the back of the trunk to prevent rolling backwards and tucked under the crosswise sheet.

the pillow to hold it in place. This prevents the person from rolling backwards. The knees are separated and the log roll is placed between the thighs with the posterior end of the roll resting on the bed. The roll provides the stability to the lower half of the body, preventing the pelvis from rolling forwards or backwards. In addition the thighs are abducted and externally rotated, which both relieves pressure on the thighs from the roll and helps to control spasms. A soft pillow is placed under the uppermost arms. A small soft cushion or similar means of pressure relief is placed between the feet.

Specific points in relation to use of the log roll The following should be noted:

• The length and diameter of the roll is import-

ant. The roll must be long enough to rest on the supporting surface, bed or floor, as this provides the stability to the lower half of the body, i.e. pelvis and lower limbs. The size of the person and the range of abduction between the thighs determine the diameter. Too large a diameter will be uncomfortable and too small will not align the pelvis with the thorax adequately. • A pillow placed behind the back to prevent rolling is usually inadequate as it displaces easily. Using a sheet placed across the bed and tucked around the pillow holds it in place. • The lower legs and feet must be placed forwards of the roll. If the lower leg is placed on top of the roll the position is unstable, besides

which the leg will then be adducted and internally rotated, the opposite of the desired effect. • If frequent flexor spasms such as those found in severe MS, are present, a large bath towel or small sheet is folded lengthwise and wound around both ankles. It is not necessary to tie the sheet or towel. This simple solution will prevent displacement of the legs during the spasm without restricting the spasm too much. (The use of restraint in this way is justified on the basis that it is in the best interest of the disabled person). It is always advisable to try out the supported position, whether supine or side lying, before prescribing or ordering purpose-made equipment. A firm pillow (or two depending upon size), rolled up in a bath towel or folded sheet will make a very acceptable log roll for use in supine or side lying. Indeed, it is usually more acceptable to introduce support gradually using rolled up pillows. If these are accepted the purpose-made devices can be prescribed although in many cases, home-made support proves the more acceptable, even in the long term. (A pillow that is not made firm by rolling tightly in a towel will not give adequate support and is not a substitute for a roll).

Therapeutic lying positions These positions are designed to organize posture in a configuration that will facilitate the development of ability in lying.


Supine lying Figure 6.6(a) illustrates a posture frequently encountered in the more severely impaired person, for example following brain injury, or in cerebral palsy. The spine is extended with head and shoulders and the sacrum being the main load-bearing areas. In addition, one side of the body may be taking more of the load than the other. The disabled person lying in this position will be unable to lift his head or shoulders because they are load bearing. Flexion of the trunk is difficult because the abdominal muscles are working in the outer range, i.e. at a mechanical disadvantage. Given these conditions, any activity, voluntary or reflex, is possible only in extension; functional activity is therefore severely compromised. Being unable to move otherwise, the movement pattern is persistently reinforced; the neural pathways serving the extensor behaviour become organized accordingly.

Virtually all activities are carried out in front of the body, thus flexion of the trunk using the abdominal muscles is essential for the progression of functional activity. The emphasis in training should therefore be placed on facilitating active forward flexion. In Figure 6.6(b) the posture is organized and supported such that the head is offloaded; support under the thighs reduces anterior tilt of the pelvis. The pelvis is now the main weight-bearing segment, forming the fulcrum about which abdominal muscle activity is facilitated and forward movement made possible, for example lifting the head and flexing the trunk. In therapy sessions, during which head and trunk flexion is encouraged, a strap across the pelvis and/or legs provides additional anchorage and is particularly useful if the disabled person is top heavy, as is the case in the young child or nonambulant person (see Ch. 1, see also Maekawa et al 1987).

a)

b)

Figure 6.6 The extended posture in supine (a) is corrected in (b) with offloading of the head and base of the spine, thereby facilitating flexion.

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The posture illustrated in Figure 6.7 shows that in addition to weight bearing at both ends of the body preventing forward flexion, the left side of the trunk is also load bearing. As a result, ability to roll to the right side is compromised. In this situation, in addition to offloading the distal body segments, the weight is transferred to the opposite side by placing a wedge or small pillow under the left side, facilitating movement to the right.

Prone lying In the prone posture illustrated in Figure 6.8(a) the trunk is flexed. The head and shoulders and the thigh and knees are the main load-bearing areas. As a result, any voluntary or involuntary movement is only possible in flexion, as indicated by the arrows. Figure 6.8(b) illustrates the changes necessary to facilitate function. The pelvis is now weight bearing and becomes the fixed point, a fulcrum, about which extension can be encouraged. The

Figure 6.8

Figure 6.7 In addition to the loaded distal body segments, the loaded left side compromises rolling to the right side. Forward flexion and rolling to the right side is possible only with offloading of the loaded segments.

The flexed posture in prone (a) is corrected in (b) and facilitates extension by offloading the distal body segments.

Section 2 Building a Stable Posture in Sitting

support under the chest and under the legs relieves the head and legs of their load-bearing role. As in supine, a strap across the pelvis and/or thighs may be used to provide additional anchorage during therapy sessions.

Provision of lying support equipment As described earlier in this chapter, much can be done with pillows, towels and foam wedges but in general these are not satisfactory in the long term. Simple materials are useful when trying a particular positioning procedure to evaluate effectiveness and acceptability by those involved. Once accepted, the provision of standard products designed specifically for the control of posture in lying may be considered. The choice is wide, from the simple rolls already described to the more complex systems such as Symmetrisleep, the Jenx Dreama or the Chailey lying support. Positive results have been reported by use of these systems in terms of postural symmetry and hip joint alignment (Goldsmith 2000, Gudjonsdottir & Mercer 1997, Hankinson & Morton 2002, Pountney et al 2002). Provision of these items should be dependent upon the feasibility of use within the context of the lifestyle of the particular individual.

Contraindications to use of lying support for sleeping Supportive equipment may not always be appropriate for night-time use, even when the physical condition indicates need. The following are some of the most frequently encountered reasons that may preclude prescription.

Functional ability

This includes any ability, however small, to independently change position during the night. The disabled person may only be able to roll over onto his back from side lying in which he was initially positioned on going to bed. Albeit that the resultant posture is often grossly asymmetrical, very careful consideration is required before giving postural support. Disabled people, especially adults, hold fast to any remaining ability, even as little as that described above. In some situations, compromise, perhaps using rolled up pillows instead of foam rolls, may be accepted.

Ability to move around in bed

This applies to the child or adult who simply does not like to be placed in a static position, as is often the case in people with athetoid/dystonic cerebral palsy. Use of a T roll with a strap is sometimes sufficient to overcome this problem.

Multiple care providers Where multiple care providers are involved with the disabled person, as in residential care, the possibility of equipment being used incorrectly or not at all increases. A high turnover of staff further adds to the problem. If equipment is provided, ongoing teaching and monitoring is essential (Pope 1997). Family dynamics

The situation may arise where a delicate balance exists in the disabled person/care provider relationship that could be disturbed by the additional task of night-time positioning (Pope 1997; see also Ch. 12). Where night-time support of lying posture is clinically indicated but circumstances preclude prescription, it may be possible to introduce corrective lying support at some point during the day, for example during an afternoon rest period, in addition to focusing on other aspects of postural management, e.g. seating and/or standing.

SECTION 2 BUILDING A STABLE POSTURE IN SITTING While the overall aims and objectives of support remain, in seating the emphasis is on support in a functional position. Compromise is required when considering support in all postures, but never more so than in support for the seated posture. However, the best compromise can only be made with knowledge of the ideal. In this section support for the disabled person who can be seated in reasonable anatomical alignment is discussed. Support for those disabled people with significant contracture/deformity is dealt with in Chapter 7.

Support in sitting The full ‘build-up’ is described but the support given will vary with the individual and his circumstances (see guidelines for support, later in

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this section). A step-by-step approach is recommended not only for the initial support but also for review and checking when problems exist (Fig. 6.9). After positioning the occupant as far back in the seat as possible, securing a stable base, pelvis and thighs is the first priority.

Step 1 The pelvis The pelvis is positioned in as near midline as possible and body segments above and below are aligned relative to it. Pelvic position is then secured in all planes.

In the sagittal plane

Posterior tilt of the pelvis is controlled by support applied at the top of the sacrum, where maximum leverage is exerted to control movement about the hip joint. Support given at a higher level, as implied by the term ‘lumbar support’ is less effective in controlling the pelvis, as the spine is flexible, besides which lumbar support is uncomfortable.

The size and shape of the sacral support is important. A wedge shape, deeper part uppermost, is generally sufficient to provide the control required (Fig. 6.9(a)). The upper border should be rounded to increase comfort. Whether it is incorporated into the backrest itself or added as a separate component depends on the equipment available and the particular circumstance. As a separate component it allows for more precise positioning but it is also more likely to be misapplied or lost. Anterior tilt of the pelvis is controlled by use of a pelvic strap that fastens into the backrest as well as into the seat (Letts 1992) (Fig. 6.9(b)). The Y fixation secures the pelvis more firmly with less chance of the strap riding up over the abdomen. A wider strap, (approximately 10 cm) gives greater control of anterior tilt. However, use of such a strap alone is generally not sufficient to control significant anterior tilt, as the force required to hold the pelvis is too great to be comfortable and may give rise to skin abrasion. Anterior control of the pelvis is more readily achieved when a wide strap is used in combination with a tilted seat position (see p. 162).

In the horizontal plane i.e. about a vertical axis

(d)

(e) (a)

(b)

(c)

Figure 6.9 Diagram of the main points of support and control of posture: (a) sacral support, (b) anterior support of pelvis, (c) ramp seat to level the thighs, (d) the deeper thorax relative to the pelvis is accommodated; (e) the arms are supported to relieve drag on the upper trunk.

Pelvic rotation is governed largely by the position of the thighs. Any established deviation of alignment of the legs relative to the pelvis, i.e. windsweeping, must be accommodated as attempts to correct alignment will rotate the pelvis. The degree of accommodation necessary is checked during assessment, with the disabled person seated on a plinth, as follows. The pelvis is positioned and held symmetrically. The thighs are then aligned with the pelvis. Any pelvic rotation resulting from this manoeuvre signifies tissue adaptation that is best accommodated (Fig 6.10(a) & (b)). Failure to do so will result in pelvic rotation predisposing to scoliosis. In the author’s experience attempts to correct the rotation by use of knee blocks, straps, etc. usually fails, as the pelvis will twist within these controls to accommodate the tight tissues (see Ch. 1, Fig. 1.3) (McDonald 2004). Ensuring that the pelvic strap is fastened in the direction counter to any rotation provides additional control.


a

b

Figure 6.10 To check for deviation of the legs relative to the pelvis, sit the person on the plinth, correct alignment of the pelvis, then bring the legs towards midline (a). Any rotation of the pelvis during this manoeuvre (b) signifies tissue adaptation. The deviation should be accommodated if pelvic asymmetry predisposing to scoliosis is to be avoided.

In the vertical/frontal plane

Pelvic obliquity is controlled by initial positioning of the disabled person on the seat, then aligning the thorax symmetrically relative to the pelvis. Support given for the purpose of levelling the pelvis should be given with great caution. For example, if the pelvis is raised on the right side, support under the right buttock will reinforce the obliquity and provides little in the way of support (Fig. 6.11 (a) & (b)). In this instance support may be placed under the left buttock provided that the position of the pelvis is correctable. If fixed, such support will only increase pressure under the left buttock.

b)

Step 2 The thighs The seat should accommodate the tapering shape of the thighs from hip to knee, otherwise on a flat surface the thighs will slope downwards, creating drag on the pelvis (Mulcahy et al 1988). A ramp as in Figure 6.9(c) levels the thighs while the rounded ischia sit snugly into the flatter area behind the ramp.

a)

Figure 6.11 Obliquity of the pelvis, support (a) under the raised side increases the obliquity as the upwards thrust is in the same direction indicated by the arrow (b).

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a

b

Figure 6.12 (a) The young man uses his limbs to control his athetoid movements. (b) When provided with adequate base support he has functional use of his arms.

A ramp is contraindicated where hip flexion is less than 90 degrees or if it interferes with transfers, although in the latter case reducing the height of the ramp may overcome the problem. Any discrepancy in thigh length or of hip flexion, i.e. less than 90 degrees, must be accommodated. Contours within the seat will depend upon the particular circumstances. The contours should be compatible with the occupant. Problems are created when using standard contoured cushions or seats, e.g. if even minor deviation of the thighs exists, the thighs will be ‘channelled’ into the preformed contours, resulting in rotation of the pelvis (see Step 1 above).

A sagging seat must be levelled, as the thighs tend to fall to the middle with adduction and internal rotation at the hip joint and a consequent reduction in base area of support (Pope 1985b). In a slung canvas seat, it is advisable to use a dense foam infill rather than a rigid board for levelling purposes because, should the top cushion ‘bottom out’, the risk of pressure damage from use of a board would be high.

Step 3 Lower legs If the thighs are parallel on the seat the knee position will not usually be a problem. Occasionally it is necessary to stabilize knee position using straps


or knee blocks, for example in circumstances where thigh position is compromised by uncontrolled movements such as athetosis/dystonias (Fig. 6.12(a) & (b)). Restraint is justified in these cases on the basis that a stable base, i.e. seat position, facilitates functional use of the trunk and arms.

Step 4 The feet The multi-component structure of the feet is difficult to align and stabilize. In order to secure a plantigrade position of the feet on the footplate the opposing forces of the ground reaction and line of gravity through the lower legs must be equal and opposite, otherwise a moment of force or torque will be introduced that will deviate the foot relative to the lower leg, as shown in Figure 6.13. The footplate should provide support along the whole length of the sole wherever possible, but interference with the front castor wheels must be avoided. The footplates must be positioned such that no tension is created in the hamstrings. Any stretch of these muscles will pull the pelvis forwards and compromise postural stability. It is extremely difficult to secure a stable base position when the hamstrings are very short because it is virtually impossible to position the disabled

a)

b)

Figure 6.13 Supporting the uncorrected inverted foot compounds the deviation.

person far enough back in the seat. Chamfering the front edge of the seat backwards will help in some cases. In those situations where a stable seated position is not achievable, orthopaedic intervention may be necessary (see Ch. 8). Chiari & Kirby (1986) and Son et al (1988) reported that the feet and legs actively assist in the stabilization of posture in sitting in non-disabled people. However, where paralysis or significant weakness in the lower limbs is a feature of the condition, this stabilizing effect is reduced, as Janssen-Potten et al (2002) found in people with spinal cord injury (SCI). The footrest is, however, useful in taking the weight of the legs, thereby reducing the drag on the pelvis that occurs when the feet are unsupported. Straps used across the forefoot alone to hold the foot in place are not recommended as the tarsal joints and sub-talar joint of the hind foot are vulnerable to distortion (McCluskey et al 1989). Where the inverted foot is corrected and held in position with straps, orthoses, etc. it is advisable to secure knee position with straps as in Figure 6.14, since shortening in the tibial muscles will tend to adduct the knee.

Step 5 The thorax and shoulder girdle Extension of the upper trunk and shoulder girdle is dependent upon the existence of a lumbar curve, which itself is dependent upon the position of the pelvis (Pope 1985(b), Zacharkow 1988). Only when pelvic position is secured as in Steps 1–4 above is it possible to proceed with support for the upper part of the body. The thorax is generally deeper than the pelvis. An angled backrest provides for extension and retraction of the shoulder girdle, whereas a vertical backrest impedes extension. The ideal shape of the backrest is, therefore, angled slightly backwards from the level of the pelvis to accommodate the greater depth of thorax (see Fig. 6.9(d)), contoured from side to side to accommodate the thorax and flat in the shoulder girdle region to facilitate retraction and upper trunk extension. If the lumbar curve is flat or flexed the spinal curve will be C shaped, with the upper trunk rotating forwards, i.e. away from the backrest (Fig. 6.15(a)). A mild to moderate kyphosis may sometimes be accommodated using a tension

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b

a a

Figure 6.14 When devices are used to control inversion of the feet (a) the knees tend to adduct as a result of the shortened inverters. The adduction can be controlled as in (b) with knee straps.

adjustable canvas backrest (Figure 6.15(b)). A more severe established kyphosis may require customized support (see Ch. 7). Whatever the means chosen the kyphosis, unless flexible, must be fully accommodated, otherwise the upper trunk will continue to roll forwards.

Step 6 The upper limbs Support for the arms is considered essential for the sedentary non-disabled person, in order to prevent drag on the shoulder girdle and to relieve stress within the cervical and thoracic erector spinae (Schuldt 1988). The need for arm support applies just as much, if not more so, to the disabled person in whatever position he adopts or is placed. The cervical and thoracic spine is particularly vulnerable to ligament overstretch (Pope 1985b).

b

Figure 6.15 Upper trunk extension is dependent upon a lumbar lordosis. A largely flexible kyphosis (a) can be accommodated by adjusting the tension in the backrest (b).


While it may be possible to balance the trunk over the pelvis, it is difficult to maintain that balance when weakness and fatigue limit the ability to maintain an erect posture. The arms must be supported to reduce the drag on the shoulders (Fig. 6.9(e)), which would otherwise pull the upper trunk forwards away from the backrest. It is emphasized that the purpose of support is to take the weight of the arms and not to prop the upper trunk. There are various means of providing support for the arms. Armrests offer minimal support when the disabled person has little or no ability to maintain the trunk erect. Armrest design is governed by the need for easy access and egress, i.e. they are usually narrow. In addition, the armrests are often flat or even convex in contour, covered in a smooth shiny material and the orientation does not correspond to the resting position of the arms. In practice the design of the standard armrests as described provides support for the elbows alone. Additional support can be provided by means of a tray; or specifically designed cushions (for further detail refer to Accessories, p. 129).

Step 7 The head Support for the head often presents the greatest challenge. Satisfactory support for the head is dependent upon two factors, first, the rest of the body must be correctly aligned and supported and second, the head must rest on the support. A headrest used in the erect position does little to support the head, as there is virtually no loading on it, especially if the head is rolling forwards or sideways, i.e. away from the support. In the erect posture the use of a headrest is primarily to prevent the head from falling backwards as may happen with weakness or fatigue. If this occurs it can be very distressing, provoking a feeling of suffocation. A headrest is also required during transport. The head will be truly supported in the tilted position when it rests on an appropriate headrest, as Angelo (1993) found in her single subject study. Even then, there are times when more control of head position is required, e.g. when travelling or if the wheelchair occupant coughs. In these situations a headband placed around the forehead can be used to maintain the head in place but it

should not be used to take the weight of the head. A piece of elastic incorporated into the band increases comfort, allowing some movement of the head while reducing jarring of the neck. Similarly, a neck collar may be used to hold the head in place but only if the head is already well supported by the headrest. A collar used to take full weight of the head is likely to cause at best discomfort and at worst, tissue damage under the chin and pain in the temporomandibular joint. Speech and feeding may also be compromised by use of a collar to prop up the head. The HCP should always keep in mind that any presenting problem of inadequate support in sitting should be approached by checking the base position first. Difficulty in supporting the head is usually the result of inadequate support further down. It is equally important to remember that the posture of the disabled person must first be stabilized if use of assistive technology devices such as communication aids, mobile arm supports, etc. is to be optimized and most importantly before considering powered mobility and the placement of controls. The selection of orientation should be the last thing to consider and then only when the posture of the disabled person has been stabilized as described in Steps 1–7 above.

Different configurations and orientations Even with the full support already described there are few people with severe and complex disability who are able to maintain the erect posture over extended periods of time. Indeed the non-disabled person rarely adopts a static erect posture. There is a plethora of literature relating to the study of the posture of non-disabled children and adults when working at desks and workstations, none of which advocate the symmetrically aligned erect posture with 90 degrees at hips and knees (e.g. Bendix et al 1983, Keegan 1953, Mandal 1981, Zacharkow 1988). It is interesting therefore that much of the standard seating for disabled people requires 90 degrees at hips, knees and ankles and an erect trunk. The need for support for people with little or no postural ability other than in the erect posture was based on earlier work, which described the postures that resulted from inadequate support (Pope 1985b).

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The length of time for which the erect posture can be maintained will depend upon the extent of weakness and fatigue in a given individual. Facilitation of a change of postural orientation within the seating system should be considered a necessary rather than a desirable feature. Alternative orientations and postural configurations increase stability by utilizing gravity. Effective functional performance depends upon postural stability and optimum mechanical conditions (see Ch. 2). This is particularly the case where impairment has prevented or retarded the development of efficient neuromuscular control, with the result that the child continues to utilize immature responses in his attempt to function (Brogen et al 1996). Mechanically advantageous postures and support must be provided to facilitate more efficient functional behaviour. With respect to orientation there are three options (illustrated in Figure 6.16): the first is to tilt the seating system backwards (a); the second is to support the disabled person in a forward leaning posture (b) and the third incorporates a straddle seat, usually combined with a forward leaning posture (c). Alternating tilted and forward leaning positions is the ideal because changes of posture and position are therapeutic in themselves, making the best

a)

compromise between the need for a resting posture and a more functional one.

Tilt and recline Tilt and recline are often confused or used interchangeably. However, tilt and recline are different configurations and at times both are necessary (Lange 2000). Tilt is used to describe the change in orientation of the whole seating system, backwards or less frequently, forwards. That is to say, the posture of the occupant of the seat should remain the same throughout the change in orientation of the seat. Recline is applied to adjustment of the backrest to seat angle where the seated occupant leans further back, thus the posture is altered but the orientation of the seat remains the same. Of these two options tilt is preferred although combined with some degree of recline in some cases. Use of the reclined position alone considerably increases the tendency to slide forwards and, in consequence, shearing within tissue layers, thus predisposing to tissue damage (see Ch. 3). The tilted position is recommended:

To increase the support to the trunk

Tilting the seat increases loading of the backrest and therefore support to the trunk provided that the trunk is

b)

c)

Figure 6.16 Alternative orientations to the erect position (a) tilted, (b) leaning forwards and (c) straddle combined with leaning forwards.


resting on the backrest. If the trunk is flexed forwards, i.e. away from the backrest, no amount of tilt will correct it.

To increase the area of support

Pressure is reduced by including the backrest in the area of support. While much can be done with pressure relieving cushions the area of support in the erect posture is small, therefore pressures will be relatively high. The tilted orientation will relieve pressure under the buttocks provided that the build-up of postural support is adequate and the backrest is truly taking additional load.

To facilitate positioning within the seat

When being transferred into the seating system using a hoist, positioning the buttocks and pelvis of the disabled person within the seating system is facilitated by fully tilting the seat first. A combination of tilt and recline features are necessary on occasion when hip flexion is less than 90 degrees, and as a result the trunk cannot be aligned over the pelvis (Sommerfreund & Masse 1995). The seat to backrest angle must be increased, i.e. reclined, to accommodate the limitation. The resultant tendency to slide is then countered by tilting the whole system. A combination of tilt and recline may also be required to facilitate care activities such as management of continence and change or adjustment of clothing. In these situations, because the backrest and body axes of rotation do not correspond (Warren et al 1982) some adjustment of posture and position is usually required on restoration of original seat to back angle.

Considerations prior to prescription of a tilted orientation Situations arise that require careful consideration prior to prescription of tilt, although most of the problems that arise can be ameliorated by altering the environment around the seating.

Interference with eating and drinking Leaning forwards is the usual posture adopted at mealtimes in non-disabled people. It is not so much that the tilted position interferes with eating and drinking but that it is awkward and ‘unnatural’ to do so when tilted or leaning backwards. In addition, the distance from food to mouth

is increased when tilted and it is difficult to see what is on the plate. If a more upright orientation is not possible at mealtimes raising the tray on which food is placed and adjustment of the headrest may help. There is much debate and confusion in relation to the position of the dependent person for assisted feeding. It is frequently postulated by many HCPs in the field of disability, that the erect posture is the correct position. However, the ‘erect’ posture is not usually defined. As a result the seated person is fed with the chair in the upright position with the body slumped and/or sliding forwards. The head is then raised and the neck is extended while food is placed in the mouth, thus compromising the ability to swallow and to speak. Swallowing is facilitated by the head position, i.e. mid-flexion relative to the shoulder girdle, as suggested by Larnert & Ekberg (1995) in children with cerebral palsy and Chan & Heck (1999) in people with MS, rather than by the erect orientation of the whole body. It should not be assumed, however, that the mechanism of swallowing in people disabled from birth has developed in the same way as that in the non-disabled person. Indeed there is anecdotal evidence that it does not. Swallowing, like any other activity, develops according to the prevailing intrinsic and extrinsic conditions (see Ch. 2).

Interference with functional activity Some studies (Green 1987, Nwaobi 1987, Pountney et al 2000) have indicated that cognitive and manual task performance is reduced with the tilted orientation. However, the authors acknowledge that the results cannot be considered conclusive, as the numbers in each of these studies were small. This author’s experience and anecdotal evidence suggest that given the appropriate support in the tilted position and, equally important, optimal arrangement of inclined and possibly raised work surfaces, most activities may be facilitated (Pope et al 1994). Limited neck flexion

It is inadvisable to use the tilted orientation if the head of the disabled person cannot be brought forward into a midline position, as his field of vision would be directed upwards. In this situation support in a forward leaning posture is the preferred option (Ch. 7, p. 168)

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Poor visual acuity

Where vision is poor the disabled person usually prefers a forward leaning position. Vision should be investigated where the disabled person appears to be unhappy in a tilted orientation and insists on pulling himself forwards.

Pressure under the buttocks

High pressure under the buttocks, even in the tilted position, may cause discomfort, especially in the male non-ambulant person when the buttock region is sometimes small and the upper trunk is comparatively large. This is worth investigating when the disabled person appears to be unhappy in a tilted position.

Forward leaning posture Figure 6.16(b) illustrates an alternative postural configuration. The forward leaning posture can be adopted as the main means of support or used intermittently alternating with the erect or tilted orientation. Leaning forwards facilitates functional activity especially when attention to accuracy and efficiency of action is called for. The forward leaning configuration is essentially very stable, having a wide base, with the trunk balanced well within the base area. Forward leaning:

partially flexed legs and the trunk leaning forward over the base of support (Figure 6.17), a very stable position. It is surprising therefore that use of a forward leaning posture has been so long in gaining credence, especially in the paediatric field. The simplest means of achieving the posture is by leaning forwards and resting the arms on a table (Fig. 6.18). The person with significant disability will not be able to do this without help and, usually, additional support for the trunk. The forward leaning posture is best introduced early, before any established tissue adaptation occurs, as it is achieved by flexion at the hip joint rather than flexion of the spine. Tight hamstrings will restrict hip flexion unless the feet are free to move backwards. A forward leaning posture is not advised in any situation where this movement is restrained, e.g. when the feet are secured on the footplate of a wheelchair. Currently there are few wheelchairs that permit the feet to remain supported as they move backwards with hip flexion, or that provide adequate support for the trunk when leaning forwards. This is a major problem in design. Seating that will facilitate an easy

• Extends and symmetrically aligns the trunk. • Relieves stress on the spine (the erect sitting

posture increases vulnerability to disc degeneration (Moore & Petty 2001). • Retracts the shoulder girdle. • Maintains elevation in the shoulder joint and flexion in the hip joint. • Facilitates head control. • Provides a solution for the person who is not suitable for a tilted position because neck flexion is limited. • Facilitates the person with poor vision. The posture therefore can be considered therapeutic in itself. It is also a very effective and relatively easy method of relieving pressure from under the ischeal tuberosities and is now advised instead of ‘pushups’ for people with SCI (Coggrave & Rose 2003). Indeed many non-disabled people adopt the posture intermittently, especially in periods of prolonged sitting. The healthy baby adopts the posture when learning to sit with abducted, externally rotated and

Figure 6.17 The propped forward leaning posture adopted by the baby when learning to sit.


Figure 6.18 Leaning forwards, arms on a table, is used for resting. Even in this ambulant man the feet are drawn backwards on leaning forwards. (Reproduced from Pope 1985b)

change of position from tilt to forward lean is urgently required. Limited elevation of the shoulder joint, approximately less than 100 degrees, is a further constraint on use of a forward leaning posture. In some cases, allowing the affected arm to hang down at the side of the table may accommodate a unilateral restriction of shoulder elevation as, for example, in people following stroke. The forward leaning posture can be achieved in a standard wheelchair provided that the range of hip flexion is sufficient to allow the trunk to move over the base and that the feet can be supported as they move backwards with hip flexion, when the hamstrings are short. Support along the trunk is usually customized in the wheelchair (see Fig. 7.15). Standard anterior supports, such as anterior chest panels and chest straps are not suitable as they do not permit sufficient forward lean, having been designed for use in the erect posture. In the 1980s a wheelchair was designed to comply with all the criteria necessary to support the disabled person in the erect, tilted or forward leaning

position, with easy transition between these orientations (Fig. 6.19(a) & (b)), (Pope et al 1988). A tray that slid forwards allowed the trunk to move forwards. A wraparound wedge placed on the tray, supported the trunk and arms and controlled lateral flexion. Where head control was limited the head rested on the wedge cushion with additional support if necessary. Supporting the head in this way reduces stress in the upper trunk and cervical tissues while at the same time head control is facilitated by muscles working in mid, i.e. optimum range (Newham & Ainscough-Potts 2001). A sliding footrest supported the feet whatever the posture. Optional devices controlled the foot position and abducted the knees when necessary (Fig. 6.14). This wheelchair proved to be a great asset in the management of people with severe postural deficit, providing therapeutic changes of position without the need to transfer from the wheelchair. Unfortunately there were difficulties. The wheelchair was heavy and not practical for use other than in an institution. There is an urgent need for a more practical wheelchair similarly specified to meet the needs of people with significant postural deficit, while at the same time contributing to their overall physical management.

The forward lean straddle posture The combination of a contoured straddle seat and a forward leaning posture further increases stability in a sitting position. Straddle seating for the disabled child has been advocated by many people, sometimes combined with a forward leaning posture. In the 1970s Motloch designed the Prone Trike at the Rehabilitation and Engineering Research Department of the Hugh MacMillan Medical Centre in Ontario, Canada (Motloch 1977). Since that time others have reported the benefits of a forward leaning and/or straddle posture (e.g. Bergen 1971, Cristarella 1975, Carrington 1978, Stewart & McQuilton 1987, Myhr & von Wendt 1991, Reid 1996). In 1985 a seating and mobility system (SAM) was designed by Eric Booth and Pauline Pope. The development and monitoring of children using the system was described and discussed by Pope et al (1988 & 1994).

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a

b

Figure 6.19 Alternative orientations: in (a) the woman is tilted after first following Steps 1–7 to support the seated posture; in (b) the forward leaning posture is fully supported, the feet are allowed to move backwards as the hip flexes, head control and social interaction are facilitated and ischeal pressures are relieved.

The basic details of postural control provided by the SAM system are illustrated in Figure 6.20 and are described as follows:

Pelvic stability Pelvic stability is fundamental to a stable sitting posture. The straddle forward lean configuration provides stability through:

• Significant control of pelvic rotation (Pope et al

1994, Reid 1996). The inclusion of an extended pommel increases the control of rotation by increasing the length of the lever arm along the inner aspect of the thigh (Fig. 6. 20(a)). • Control of pelvic tilt, anteriorly by the front support and posteriorly by gravity, facilitating midline position of the pelvis and development of a lumbar lordosis. • A contoured seat similar to a horse saddle with the addition of thigh support, provides comfort and increased pelvic and thigh alignment. Stability is gained without recourse to the application of devices such as knee blocks, a point

of consideration in cases of unstable or dislocated hip joints. In addition, the straddle seat maintains alignment of hip joint components and may contribute to hip joint integrity in those at risk of subluxation.

Trunk alignment and stability Stability of trunk alignment in both frontal and sagittal planes is incorporated into the design of the front support, which extends from mid-sternum to below the anterior superior iliac spine (ASIS) (Fig. 6.20(b)). A strap through the lower border of the front support is crossed at the back and fastens into the seat, pulling the straps tight (Fig. 6. 21(a)). The front support should not impinge the axilla or the neck when the head flexes forwards. In essence, the front support fulfils the role of weak abdominal muscles, controlling alignment of thorax to pelvis as well as limiting anterior pelvic tilt. As in all situations where control of alignment and comfort is required, the surfaces should be contoured to be compatible with those of the body.


b

b c a

a

Figure 6.20 The straddle seat controls rotation of the pelvis (a); the front support controls pelvic and trunk alignment (b); the tray supports the arms and may be used to mount controls or other assistive technology (c); a wedge may be placed on the tray to provide additional support to the shoulder girdle and to facilitate head control.

Shoulder girdle, upper limb and head stability The lumbar lordosis resulting from the position of the pelvis, facilitates extension of the upper trunk which, together with the stability given to the trunk, facilitates head control and effective use of the upper limbs (Hare 1984, Pope et al 1994, Zacharkow 1988). A wraparound tray provides the most useful support for the upper limbs and shoulder girdle and helps to keep the arms in place (Fig. 6.20(c)). In addition, the tray acts as a work surface for mounting a control device for use with powered systems and any other electronic equipment. A grasp bar may be fitted to provide additional shoulder girdle stability.

Lower limbs and feet The feet are supported when they may contribute to overall stability (see also Step 4, p. 115).

Figure 6.21 The pelvic strap is pulled tight and crossed and inserted into the seat at the back (a). A harness may be required to maintain a forward leaning posture where extensor behaviour is well established (b).

There are occasions when supporting through the feet may be counter-productive, e.g. where misalignment of the foot cannot be corrected and in consequence loading through the foot would compound the deformity, or where the individual, adult or child, uses the feet as the fixed point for any movement, rather than using the pelvis as the fixed point for forward flexion of the trunk (Pope 2002, Pope et al 1994). In the latter situation the seat is raised to ensure foot clearance from the support in order to encourage movement from and about the pelvis. When support for the feet by the footrest is not indicated the position of the feet must be otherwise controlled, e.g. by use of ankle foot orthoses (AFOs) and by regular standing where possible. The support already described is standard for the SAM seat. Additional support may be required as follows:

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Upper trunk harness

This harness is useful to encourage contact of the trunk with the front support in those unaccustomed to the posture. It is particularly useful with the athetoid child and the child with dominant extensor behaviour (Fig. 6.21(b)).

A wedge

A wedge placed on the tray that encompasses the upper thorax provides the hypotonic child with additional support for the head and facilitates shoulder girdle extension (Fig. 6.20(d)).

Custom moulded straddle seat A customized seat may be required where significant asymmetry of lower limbs relative to the pelvis exists, for example in people with subluxation/dislocation of the hip joint.

Guidelines for prescription of a straddle forward leaning system The forward leaning straddle position of the body is recommended in the following situations:

• The

person with little or no ability to sit independently, who is at risk of developing scoliosis of the spine. • The child with athetoid movement is perceived to benefit from this type of support in sitting, where the stability given to the trunk in a functional posture helps to reduce extraneous movement and enables the child to direct his effort to use of his upper limbs. The use of arm gaiters may facilitate function by reducing the number of joints that need to be controlled, in this case, the elbow joint (Fig. 6.22). • The straddle seat used as a single component may be appropriate for the more able person who requires some assistance with stabilizing his base in sitting, for example the child (or adult) with diplegic CP (Fig. 6.23) but caution is needed if this option is exercised to ensure that the user does not slump into a kyphoscoliotic posture when tired. • The straddle seat as a single component could be the seat of choice for the ambulant person with a flexed, adducted gait pattern. Such a seat is useful as a counter strategy (see Ch. 10, p. 233) when sitting, to ameliorate the effects of the gait pattern and to provide a stable base during sedentary activity.

Figure 6.22 This athetoid child is using arm gaiters to assist in maintaining hold on the grasp bar. The additional shoulder girdle stability facilitates the child’s ability to control the SAM using head movements to activate switches.

• The

principles of the SAM seating may be incorporated into early chairs for very young children where there are signs of a developing spinal curvature as seen in Figure 6.24.

It is important to note that earlier work (Fulford et al 1982, Pope et al 1994) suggests that provision of support does not prevent the development of postural ability. However, the younger child is likely to benefit most as motor patterns may be less entrenched, he is generally more physically flexible and is more tolerant of the postural configuration (Pope et al 1994).

Contraindications for use of straddle forward leaning seating There are times when straddle seating and/or a forward lean position are not advised. Each case


a

b

Figure 6.23 For the diplegic person in (a) a straddle seat alone may be sufficient support (b).

must be judged on an individual basis. In general the system is not recommended for use in the following situations:

curve can usually be accommodated but modifications to the standard support, or custom moulded support are usually necessary.

Rapidly deteriorating pathologies In these circumstances the purpose is to give as much support as possible in the most comfortable position rather than to promote functional activity. A system that permits a variable tilt angle is usually the preferred option.

Significant limitation of abduction or gross windsweeping It is not possible to accommodate gross

Established kyphosis and/or scoliosis Significant structural deformity is not easily accommodated in a straddle forward leaning position. Indeed, it is often impossible in such cases to place the individual in that position. An established kyphosis is contraindicated because the visual field would be limited to the floor. A flexible kyphotic or scoliotic

deviation of the lower limbs using a straddle seat, although custom moulding the seat might overcome these problems in less severe cases.

Introduction at a later stage in development

The introduction of a completely different style of seating to the older child or teenager needs very careful consideration. There may be difficulties in transfer into and out of the system as the child grows. There could be a psychological reaction to use of a novel system quite different from that previously experienced or that differs from his peers.

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b

Figure 6.24 The principles of the SAM are incorporated into this rocking chair, in which the small child with a flexible spinal curvature (a) is seated in (b).

Incorporating a raised contour in the pommel area may be useful in maintaining the thighs in a parallel position. Caution is required if:

• The contour interferes with transfers. • The thighs are deviated relative to a

Gastrostomy feeding Feeding directly into the stomach via a tube inserted by percutaneous endoscopic gastrostomy (PEG), is not, per se, a contraindication but care will be necessary in positioning the front support to ensure there is no undue pressure in the region of the gastrostomy site.

Accessories used in conjunction with standard seating systems Cushions Standard cushions do little to control movement about the hip joint and therefore influence on pelvic position is negligible. Nevertheless, cushions are extremely important in stabilizing the position of the thighs (Step 2 above).

Contours

The shape or contouring of the cushion is important.

the pelvis (Step 1 Building a stable posture in sitting, p. 114). • A urine bottle is used while seated in the wheelchair, although it may be possible to incorporate a removable pommel in this instance. The interlateral, i.e. side to side, contour of the cushion is extremely important, as it will influence the position of the thighs. Figure 6.25 illustrates the effect of differing contours. In Figure 6.25(a) the hammock effect is illustrated. In Figure 6.25(b) the thighs will remain in position only under static conditions, any disturbance such as a spasm will easily displace the thighs. A flat-sided pommel will do nothing to restore the position. In Figure 6.25(c) a sloping pommel will tend to abduct the thighs. Any spasm will drive the legs into adduction but the original abducted position of the thighs would be recovered on relaxation. A simple means of gaining abduction and external rotation of the thighs is achieved by use of a ‘dome’ shaped seat (Fig. 6.25(d)) featuring a shallow convex curvature under the thighs. As the curvature is very shallow, interference with


a)

b)

c)

d)

Figure 6.25 Thigh position viewed anteriorly. Contours are important in control of the thighs. In (a) the thighs will roll towards the middle reducing the base area, in (b) the thighs will stay in position under static conditions, in (c) the thighs will tend to roll away from the centre. In (d) even the shallow dome shaped contouring will facilitate abduction and external rotation of the thighs together with recovery of position should adductor spasm occur.

transfers is minimal. The dome cushion works on the principle that objects under the influence of gravity, will always fall to the lowest point, thus the thighs when relaxed, will fall to the sides of the cushion. Even where adductor spasms occur, the thighs will settle into the desired position when the spasm has passed. This seat cushion is proving to be extremely useful in controlling the position of the thighs without need of more restrictive devices such as pommels or knee blocks. Obviously such a cushion would be contraindicated where too much abduction of the thighs exists, such as in people with muscular dystrophy.

Arm support

• Most have limited adjustment. • Few remain level when the chair seat is tilted.

Objects fall off and elbows slide backwards creating a forwards rotation of the shoulders, so defeating the object of the support. • A tray hides the lower part of the body from the seat occupant’s view, although this problem may be alleviated by using a transparent tray. • People with disturbance of vision such as in MS may find that a transparent tray increases the disturbance.

Specifically designed flexible arm support Flexible arm support provides a very satisfactory alternative to the tray. The cushion-like supports illustrated in Figures 6.26 & 6.27 are made of an

Support for the arms can present a challenge not least because such support is usually bulky and obtrusive. Nevertheless, supporting the arms is integral to building a stable posture so the challenge must be met.

Trays Trays are extremely useful, not only for support for the arms but also in the provision of work surfaces and for location of controls, communication aids and other assistive devices. Despite the obvious advantages there are disadvantages:

20” 13” 14” 13”

• They

do not always fit sufficiently closely around the wheelchair to prevent the occupant’s arms from falling off the tray. • They are bulky and may limit access to tables, desks, workstations.

Figure 6.26 A V-shaped cushion lightly filled with polystyrene beads, which is tucked around the disabled person with the arms supported and nestling into the cushion.

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inner bag loosely filled with polystyrene beads and an outer cover. Bag and cover are made of stretchable fabric. It is important that they are not overfilled, as the arms are meant to nestle into the support as opposed to lying on top. The support illustrated in Figure 6.26 is a Vshaped cushion, lightly filled with polystyrene beads, tucked around the disabled person with the arms placed snugly on top. The support illustrated in Figure 6.27 consists of a long tube divided into three sections. The middle section has few beads and the end sections are loosely filled. The middle section substitutes for sacral support, positioning it in the same manner as for sacral support described in Step 1 of building a stable posture, above. The end sections are brought forwards to support the arms, which nestle on top. This arrangement also provides a degree of lateral stability. A tray and the flexible arm support can be used interchangeably depending upon circumstances, e.g. a tray for mealtimes and the flexible arm support for relaxation or on a social occasion.

Lateral supports As noted in Step 5 above, the backrest should have a shallow contour to correspond with the interlateral curvature of the thorax. Additional lateral support is used to best effect when combined with the tilted position where some of the weight of the trunk is taken by the backrest. Lateral supports used in the erect posture to support a lean to one side often result in the seat occupant hanging over the support, causing discomfort and possible compression of nerves in the axilla. The shape and location of the lateral supports are of immense importance in achieving effective control. The contact surface should be concave, compatible with the convex thorax. The contact area with the thorax is much reduced if the lateral supports are flat or convex, with the result that the support is less effective and predisposes to localized high pressure. Lateral supports should not be space occupying when attached to the back support. If they are bulky, the thorax is pushed forward, thereby interfering with extension of the upper trunk.

38cm

165cm

25cm

Figure 6.27 A long tube of stretchable material, divided into three sections, is lightly filled with polystyrene beads. The middle section has few beads and serves as a sacral/pelvic support. The two distal segments are brought forwards and placed on the lap of the disabled person, which then supports the arms.


Lateral supports should not interfere with movement of the arms. In order to minimize impingement in the axilla, the upper border should be curved downwards and forwards. Bilateral supports are virtually always required. Pelvic position must be secured (Step 1 above) before adjusting the lateral supports, which are then located to correspond to the particular curvature; the first is positioned at the apex of the convexity while the second is positioned as high as possible on the opposite side.

Headrests There are many and various shapes and sizes of headrest, with varying degrees and planes of adjustment. The headrest should be multi-adjustable, as the correct position requires fine tuning. The disadvantage of multi-adjustable head support is the ease with which it can be altered inadvisably. A curved surface will control head position better than a flat surface, but a deeply curved headrest, while useful in some situations, may restrict head movement and reduce visual field. It may also cause pressure on the ear if the head of the disabled person leans to one side. The head band as used in Figure 6.28 is taking the whole weight as the head rolls forward and should not be used until the kyphosis has been

sufficiently accommodated to the point where the head is erect and resting on the headrest. Only then should the headband be used to maintain the head in place.

Knee restraint/knee blocks Knee blocks are used frequently to stabilize the seated posture and are recommended with some seating systems, e.g. Pountney et al 2000. However, their use is not recommended when the hip joint is unstable unless accurate alignment can be assured, or as a means of preventing sliding forwards because the body segments will buckle behind the restraint. Unless applied accurately and symmetrically knee blocks will tend to compound any deviation of the thighs and may induce a postural asymmetry (see Ch. 1, p. 4 and McDonald 2004). A tendency to slide forwards should be controlled by securing pelvic and thigh stability and, if necessary, use of tilt or forward leaning postures as appropriate. There are occasions when straps are used to hold the knees in abduction, as illustrated in Figure 6.12b, to secure a wide stable base, or to control the concomitant knee adduction that may occur when securing foot position (see Fig. 6.14).

Guidelines for support in sitting A shorter version of the guidelines described here has been published elsewhere (Pope 2002). They are expanded here as a method of correlating the complexity of support needed with a given level of ability (see Ch. 5 for Ability Scale, p. 91). It is emphasized that these are guidelines only. The circumstances pertaining to a specific individual will vary widely. Much will depend upon what the disabled person and his care provider will accept or can manage.

Level 1 — Unplaceable. Where contracture and

Figure 6.28 The headband used as in the photograph is not recommended. The head is being held totally by the band, with consequent neck extension predisposing to or aggravating existing swallowing and speech problems. The kyphosis must be accomodated before the head is supported.

deformity, for example as in scoliosis, prevents reasonable alignment of body segments. In this situation customized support is usually the preferred option, as the contours of the body do not correspond to that of standard seating. In addition, the points of control and support required are likely to differ from that which can be provided in standard seating.

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Level 2 — Placeable with support. Can be placed in an anatomically aligned seated posture but little or no ability to hold himself erect. Such a person requires full support as in the step-by-step process of building a stable posture described above (see p. 113–117). It is unlikely that the erect posture can be used other than for very brief periods, if at all, as bending and buckling of the body within the support will occur. Gravity assisted positions such as tilted back and/or leaning forwards will be required. Level 3 — Can independently maintain a sitting position when placed. Unable to move for fear of falling. The presenting body posture may be asymmetrical as in Figure 2.14 (Ch. 2) but remains flexible and requires maximum control of thighs and pelvis in order to secure a stable base. Additional support for the trunk, arms and head is also likely to be required, although the amount of support will differ with the condition of the disabled person. For example, securing a stable base using a straddle seat may be sufficient for the child with diplegia, while the person with MS is likely to require support for trunk, arms and head. The erect position may be possible for short periods of time but an alternative gravity assisted position, i.e. tilted or forward leaning, will almost certainly be required. The period of time in one position or the other will depend upon individual levels of weakness and fatigue.

Level 4 — Can maintain position, move forwards and backwards within seat base. The support given for this level of ability is similar to that for Level 3 above. Support and control of pelvis and thighs remains essential but the additional support given above the pelvis may be less. A longer period of time in the erect position may be possible. However, an alternative resting, gravity assisted position is still required.

Level 5 — Can move forwards, backwards and lean to the side within seat base without falling; use either hand freely without losing balance. Attention is focused on providing the necessary support without interfering with movement, i.e. a secure pelvis, thighs and foot position

with additional trunk support as necessary, with provision of an alternative resting position.

Level 6 and 7 — able to move out of position and, in the higher level, to regain position in a controlled manner. It is important that transfer into and out of position is not impeded by support. In general, well-designed seating for the non-disabled person should be sufficient, e.g. contoured surfaces as in modern car seats. Frequently, even with this level of ability, a wheelchair is used for lengthy periods of time during the day. As always, the seating should be supportive. The disabled person should be encouraged to use a number of different positions throughout the day. There are circumstances when the fully ambulant person requires specific seating, e.g. the person with CP who walks with internally rotated legs and adducted knees may benefit from use of a straddle seat such as that illustrated in Figure 6.2, both for stability and to maintain length in the soft tissues, i.e. the adductor muscles. Such a seat is recommended for sedentary activities for as much time and as many situations as possible.

SECTION 3 BUILDING A STABLE POSTURE IN STANDING Building a stable posture in standing is integral to the overall physical management of the disabled person with severe and complex disability. It should commence as soon as possible following trauma such as BI or SCI, when independent standing and walking are no longer possible in, for example, MS, and at the chronological age for standing in children, i.e. around 12 months of age (Association of Paediatric Chartered Physiotherapists (APCP) 2001). The support necessary ranges from total support required to facilitate maintenance of an erect posture when postural deficit is severe, to the supply of orthotic splinting for more local stabilization. Both may be required on occasion. Standing in a frame is a largely passive exercise while provision of orthoses may be used to facilitate activity such as a standing transfer, or to stabilize joints when standing or walking.

Section 3 Building a Stable Posture in Standing

Supported ‘therapeutic’ standing Rationale A standing program (Stuberg 1992) features strongly in both acute and long-term rehabilitation programmes. It is advocated for ongoing home programmes, although there is anecdotal evidence that the person is less likely to stand or be stood at home. In this author’s experience, the various reasons why this appears to be so include a lack of space for the equipment, a lack of time or assistance in carrying out the procedure, or a combination of these difficulties. In addition, it is not unusual for people to refuse what they perceive to be medical equipment in the home environment. Nevertheless, standing is considered an important component in any physical management regime for the following reasons.

To maintain the length in the tissues of the largely sedentary person The non-ambulant person is vulnerable to contractures, especially in the hip flexors, hamstrings, plantarflexors of the ankle, the long and short muscles of the feet and associated tissues. The soft tissues of the trunk are also vulnerable to contracture with the development of kyphotic and scoliotic curves. Standing is an effective means of stretching these vulnerable tissues with less effort and perhaps more effect than by manual passive stretch. To be effective the standing posture must be erect, correctly supported and aligned and must be for sufficient time. A preferred posture (see Ch. 3) seen in lying and sitting is also likely to be evident in standing, therefore the posture must be corrected as far as possible in order to apply stretch to the relevant tissues. Stuberg (1992) recommends that a minimum period of 45 minutes 2 or 3 times per week is required to maintain tissue length, a view endorsed by this author (see Ch. 10, p. 234).

Bone mineral density Without regular loading, bone mineral density (BMD) decreases rapidly, as studies have shown e.g. in SCI (Eser et al 2004) and in CP (Tasdemir et

al 2001) and even in healthy subjects (Fukuoka et al 1997). While animal studies indicate that static loading does not prevent bone loss (e.g Carter et al 1981), Stuberg (1992) suggests that standing for a minimum of 1 hour, 4 or 5 times a week can maintain BMD in children with cerebral palsy. Caulton et al (2004), in a recent randomized control trial of a standing programme for children with cerebral palsy, found that a 50% increase in the child’s current standing programme over a 9month period increased vertebral but not tibial BMD. The average pretrial standing time for the children was 5 hours per week, with a range of 3–6.5 hours. Other studies in animals have shown that intermittent dynamic loading will retard bone loss (e.g. Lanyon & Rubin 1984). Frost’s principle (1964) cited in Stuberg (1992) states that the stimulus for bone remodelling is strain (deformation) not stress (pressure), a view endorsed in LeVeau & Bernhardt (1984). Recent work in people paralysed as a result of SCI has shown that bone density and muscle mass in the lower limbs may be maintained by standing with the aid of electrical stimulation to the extensor muscles (Shields 2004). There is some evidence (Ward et al 2004) to suggest that dynamic loading, i.e. standing on a vibrating platform, will assist in maintaining mineral density in the lower limb bones.

Normal bone growth and development Normal bone growth requires sufficient nutrition, mechanical loading and the contraction of muscles. The loading should not only be dynamic but the magnitude and the direction of loading determine the strength and shape of bone, for example acetabular development of the hip joint is dependent upon the correct alignment and loading through the head of the femur (Cornell 1995, Porter 2004, Scrutton & Baird 1997). Most children later diagnosed as having cerebral palsy, are born with normally aligned hip joints (Cornell 1995, Stuberg 1992). This suggests that perhaps more could be done to prevent these problems arising through appropriate positioning and dynamic loading (Goldsmith 2000, Pountney

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et al 2000, Pountney et al 2002). How much weight bearing and how often it is needed to promote normal growth of the hip joint is, however, not yet clear.

Bladder and bowel function It is logical to suggest that when standing, gravity may assist bladder drainage and stimulate bowel function. While firm evidence is lacking, it is frequently observed that when the disabled person is placed in the standing posture, the flow of urine and also defaecation appears to be stimulated. It is not yet known whether the effect on bladder and bowel is the result of the change of posture, the effect of gravity or the result of neural stimulus triggered by standing.

Therapeutic standing devices There are many and various devices used for support in a standing posture. It is not possible or appropriate to cover all of these here. The devices most commonly used are the tilt table, the standing frame, the prone stander (used mostly with children), and increasingly, wheelchairs that incorporate a sit to stand mechanism. There are a number of standing frames in which the angle can be adjusted, from erect to varying degrees of prone. Devices for assisted standing are, increasingly, electrically powered. The choice of device will depend upon the individual circumstances, therefore only general points in relation to each type will be made.

The tilt table Promotion of head control and functional activity in the upper limbs

This device is most frequently found in acute hospital departments and rehabilitation units (Fig. 6.29).

Standing provides an alternative posture in which to facilitate head, upper trunk and upper limb activity. When body segments are fully supported and stabilized, the muscles controlling the head are provided with the anchorage they require in order to function. Similarly, functional activity of the upper limbs is facilitated by providing the stable base that is a prerequisite for effective movement control (see Ch. 2). In those rare situations in which the disabled person cannot be placed in a functional sitting posture, e.g. where there is little or no hip flexion, standing provides an alternative to the only other position in which they can be placed, i.e. lying.

Psychological benefits Many disabled people like the opportunity to stand, not only for the therapeutic benefit but also for social interaction. The ability to stand, enabled by the new generation of powered wheelchairs, significantly increases the independence of the disabled person. He is able to stand intermittently with much less effort and possibly independently of personal assistance. However, standing is by no means a universal pleasure and each case must be judged on its merits.

Figure 6.29 Tilt table used when little or no postural ability is evident and for graduated weight bearing.


It is generally used where the disabled person has significant postural deficit and requires maximum support. It is very versatile, in that it can be used for a graduated progression from fully supine to the erect posture. By use of the supporting straps, the posture of the disabled person can be corrected and more readily controlled before standing. The angle of the footrest is usually adjustable, so that some degree of plantarflexion can be accommodated. A tray or handles provide a means of supporting the arms. Placing support such as a small pillow under the knees can accommodate some degree of knee flexion contracture. Handling is relatively easy, as the disabled person may be transferred onto the table by hoist. While the benefits of the tilt table are acknowledged, there are a number of disadvantages:

• The table is flat with the result that in the erect

position, the deeper dimension of the chest relative to the pelvis causes the upper trunk to be pushed forward and therefore not balanced over the lower half of the body. This problem may be overcome by placing a small pad or cushion under the pelvis when organizing the posture before standing. • The amount of weight bearing through the legs and feet is greatly reduced, even in the near vertical position, because the supporting straps and tray take a significant amount of weight. • It is well recognized that the tilt table induces a lowering of blood pressure more frequently than other standing devices. Therefore the disabled person using a tilt table should be monitored (see p. 140).

Prone standing devices These devices are used mostly with children. The general view is that head control and trunk extension is facilitated in the prone position but this was not confirmed in a study of 26 people with CP (O’Brien & Tsurami 1983). The prone stander is similar in many respects to the tilt table in that it allows a graduated progression from approximately 45 degrees to a

near erect position and postural asymmetries can be controlled and accommodated. Stuberg (1992) reports that the amount of body weight through legs and feet has been found to be no more than 70–75% even in the near vertical position.

Upright standing frames These devices are used frequently in all areas of rehabilitation including in the home. The person is assisted from the seated posture into the standing posture, increasingly, by powered lifting and lowering mechanisms. It may be difficult to control the posture of the disabled person as they rise into the standing position. However, weight bearing is likely to be greater in the upright standing frame provided that the knees are extended. A variation on the usual standing frame is currently in production. It is designed to support the child from a very early age in the posture that the non-disabled child adopts prior to learning to walk, that is, with the trunk angled forwards slightly (Fig. 6.30) (Green et al 1993, Pountney et al 2000). Using this device the child should be introduced to standing as near to the usual developmental milestone as possible.

Sit to stand wheelchairs Some wheelchairs incorporate a powered elevating mechanism that enables the user to rise from the seated to the standing posture. These wheelchairs combine mobility with the therapeutic, functional and social benefits of standing. In addition, the user is enabled to stand in order to reach shelves, etc. and to make eye contact with others in a standing position. As a result, the user can be more independent, care provider involvement may be reduced and the erect position can be assumed wherever and whenever the user wishes. In addition, the graduated rise from sit to stand can be used to accommodate a degree of knee flexion contracture but care must be taken to avoid overstretching tight tissues that may cause pain and tissue damage.

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Use of these wheelchairs enables limited mobility, function and social interaction as well as having a therapeutic benefit. As ever there are disadvantages combined with the advantages.

• Sit

Figure 6.30 The recommended position for standing the child, with legs extended, leaning slightly forwards at the hip joint.

Some degree of dynamic loading may be achieved by using the powered sit to stand mechanism to rise and lower slowly and intermittently during a given period of standing. Although the conditions are not directly comparable to those described by Shields (2004), in which bone and muscle mass was maintained by rising and lowering to standing approximately 10 minutes daily via electrically stimulated extensor muscles in people following SCI, some additional benefit may accrue from passive rising and lowering. These wheelchairs may be useful when severely restricted hip flexion prevents the adoption of a sitting posture. People with such limitations are otherwise doomed to life in a virtual lying posture.

to stand wheelchairs are heavy and inevitably complex in structure. • The action in rising from sitting to standing creates considerable shearing at the knee joint, which is usually not protected by muscle contraction. The ligaments of the knee are therefore subject to significant stress during this operation, particularly at mid-point of elevation (Seedholm & Terayama 1976). While transient shear forces may be tolerated, as during sit to stand, these forces may be damaging when sustained, as in partial standing where knee flexion contractures prevent attainment of a fully erect posture. The shearing at the knee joint is reduced where the support is placed across the knee rather than, as in many wheelchairs, below the knee joint. Support placed across the knee, however, must accommodate movement of the patella if pain is to be avoided when rising and lowering. The prototype shown in Figure 6.31 was primarily used as a sit to stand chair rather than for mobility. It was used with great success in a large rehabilitation unit for the more severely disabled person. There were a number of advantages related to this chair, namely it:

• Facilitated sideways transfer into the system. • Enabled posture to be aligned before standing. • Enabled varying degrees of an erect posture to

be sustained without undue stress on the knee joint. • Elevated the disabled person through the ‘normal’ vertical plane with less anxiety and vertigo.

Orthoses used for joint stabilization There are occasions when devices or equipment are used to facilitate positioning, standing and, in some


by Ponton (1997). An overview of the subject only is given here with specific reference to the role of orthotic devices in the physical management of the more severely disabled population.

Lower limb orthoses Ankle foot orthoses (AFOs) provide control and stability for the foot and ankle joint while knee, ankle, foot orthoses (KAFOs) include stabilization of the knee joint and hip, knee, ankle, foot orthoses (HKAFOs) also stabilize the hip joint. Some of these orthoses are standard devices but most are custom made to clinical prescription by a suitably qualified orthotist, to meet the specific needs of the individual.

Ankle foot orthoses These range from very simple devices that hold the position of the foot to hinged AFOs and dynamic splints (DAFOs) that are flexible but provide minimal support (Morris 2002). AFOs are generally used to secure and control the position of the ankle and feet while standing and walking. They may be used in conjunction with other support such as in a standing frame or with a walking frame. They are also used to maintain the mid-position of the feet or to prevent further contracture in people who no longer stand or walk. Morris (2002) reviewed studies of the efficacy of lower limb orthoses and concluded that the more rigid AFOs assist in preventing equinus deformity while the DAFOs are unlikely to do so. Further, there is little evidence to suggest that preventing plantarflexion of the foot prevents muscle shortening and joint contractures. Figure 6.31 The prototype electrically powered sit to stand chair shown in the photograph provides support in the fully erect posture and will also accommodate moderate hip and/or knee flexion contractures.

cases, walking. Orthoses may be used alone or in conjunction with the supportive devices already discussed. In general, these’ devices are used to provide localized stability. Orthotic devices are discussed by Edwards & Charlton (2002) and are comprehensively covered

Knee ankle foot orthoses KAFOs incorporate stabilization of the knee joint and sometimes the hip joint in addition to that of the ankle and foot. They usually incorporate a hinge at the knee to facilitate sitting. Others are more complex, incorporating mechanisms to assist leg action (Chignon et al 1990). KAFOs are used mainly to assist with walking. KAFOs require the skills of an experienced orthotist in conjunction with an equally experienced therapist, particularly at the stage of prescription and fitting. For successful use KAFOs

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require careful fitting, precise adjustment and regular monitoring. The more complex KAFOs take time to put on and usually require the assistance of another person, which may be a disadvantage in some cases.

Assisted walking devices There are a number of orthoses designed to assist walking, e.g. the ORLAU parawalker (Butler & Major 1987), incorporates hip stabilization in addition to stabilization of the other joints of the lower limbs. The advancement of technology and use of lighter weight materials has assisted this development. The amount of support and the degree of assistance to gait may be adjusted to suit the particular need, thereby providing the disabled person with a finely tuned system that allows him to exercise to the best of his ability. The advantage of these devices lies in the customized adjustable support that enables a form of dynamic weight bearing in people who would otherwise be unable to walk even a few steps. Devices that enable a form of walking have a place in the repertoire of management, especially in children, not only because they provide dynamic exercise with its associated benefits (see p. 134), but also because it gives encouragement to the child and his parents. It is important, however, that unrealistic expectations are not raised by use of these devices. The advantages are somewhat offset in a number of cases by the fact that assisted walking devices are expensive, require regular review and adjustment and take time and effort to put on and take off. Commitment and motivation on the part of the disabled person and care provider is necessary for persistent use of the device. Children tend to be the main users, particularly those with spinal cord lesions including spina bifida. The less frequent use in adults is at least partly explained, in this author’s opinion, by the effort, time and commitment involved with their use. The David Hart Walker is designed mainly for assisted walking in children who would otherwise not be able to walk independently. The child is supported from behind within a stable frame.

Figure 6.32 The assisted walking device illustrated is the David Hart Walker enabling this completely non-ambulant child to move around freely and safely.

Flexible adjustable straps allow movement of the lower limbs, which move the frame (Fig. 6.32). The device is adjusted to fit the particular child and facilitate his mobility. Expert adjustment is required with growth and any change in condition. The device enables the child to move about freely, from which the child and his parents gain great pleasure, although the degree to which this form of exercise benefits independent standing and functional walking is unclear.

Gaiters

Leg and arm gaiters may be useful in situations where muscle weakness is insufficient to


They may be used in conjunction with other equipment such as a ladder (Fig. 6.33), parallel bars, walking frame or sticks. Gaiters are relatively cheap and easy to apply. They are extremely useful in therapy sessions. Stabilizing the knee joint in this way directs the disabled person’s effort to strengthening the muscles controlling the hip joint and trunk, which facilitates standing or walking without having to resort to the stabilizing strategies illustrated in Chapter 2 (p. 39). In many cases given this support the disabled person is able to walk with the aid of sticks or a walking frame/rollator. While it is apparent that the mode of walking with stiff legs requires greater effort and reduces speed in line with the findings of Rose et al (1990) and Duffy et al (1996), it does provide an opportunity for dynamic activity in the erect posture that may be of great therapeutic benefit, physical and psychological, to the person with incomplete paralegia, the diplegic child (Murphy 1996) or adult (Pope 1993).

Sticks, walking frames, rollators These are useful items that provide additional stability to the person who is or feels unstable when walking. They may be used alone in the more able person or in conjunction with orthoses, gaiters or splints described above.

Additional considerations While there are undoubtedly benefits in a regular standing programme, important issues arise that should be considered when designing a programme and when choosing the most appropriate equipment for each individual. Figure 6.33 Leg gaiters are used to provide support for the knees, enabling this child to stand while holding on to the ladder.

maintain knee extension in an erect posture or to stabilize the elbow joint in order to facilitate functional use of the arm (Hare 1984). Used alone, leg gaiters may be sufficient to permit independent standing or even walking.

Length of time in standing posture The length of time required to influence bone mineralization is considerable and, for best effect, it should be dynamic. It may be feasible to follow the programme recommended by Stuberg (1992), to maintain bone mineral density, of standing for 1 hour, 4 or 5 times a week but in practice daily standing for even half an hour is rarely possible.

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However, as already discussed above, maintenance of bone mass is not the only reason for standing and a less rigorous programme may satisfy the requirements.

The amount of weight bearing in supported standing Achieving an erect posture in supported standing is no guarantee of significant weight bearing through the feet. In general, the more upright the posture, the greater the loading, but the actual loading may be considerably reduced by the type of support used. The straps used to secure the position undoubtedly take much of the body weight, particularly where knee flexion contractures prevent full knee extension, when the straps securing the knees take most of the load. The use of a tray to support the arms will further reduce the loading through the feet.

The importance of activity or distraction during standing Static supported standing can be immensely boring. Distractions such as listening to music or watching TV can be helpful and may divert attention from the possible discomfort produced by stretched tissues and encourage the person to tolerate standing for longer periods of time. Supported standing provides a good opportunity for the disabled person to use their arms in some functional activity. It is useful to combine standing with other therapies such as occupational therapy or speech therapy. Combining therapies in this way provides an efficient use of time and resources.

Induced hypotension A fall in blood pressure frequently accompanies sudden change of position from sitting or lying to standing. The non-ambulant person who is essentially sedentary is vulnerable when placed in the erect position and may even lose consciousness. This is obviously serious, as being strapped into the device means the usual remedial effect of fainting, i.e. falling, cannot occur. To avoid occurrence, close monitoring of the person in a standing device must be ensured. Some people are at higher risk than others, such as the disabled person who has not stood for some time, who stands infrequently or has a deteriorating condition such as MS. The warning signs of imminent fainting are frequent yawning and pallor, especially around the lips. If there is any doubt at all, immediate action is called for, lowering the person to the horizontal position as rapidly as possible and turning him into side lying as vomiting may occur. As noted previously, hypotension appears to be more frequent with use of the tilt table than with other standing devices but it could also be due to the fact that the tilt table is used in the more severe conditions.

Fractures Standing the disabled person who has not stood for some considerable time should be undertaken with caution, as the bones will almost certainly be osteoporotic. Most HCPs will be aware of the need for careful handling, for example the position of a leg or foot should not be adjusted if it is weight bearing as torsion applied in this situation is potentially hazardous. If adjustment is required, the weight should be taken off the feet first.

Situations requiring caution While standing is an integral and important component in any physical management regime, there are certain situations that require more than usual care and vigilance.

Benefit versus effort and tolerance If standing a disabled person takes an undue amount of effort from assistants to secure the position, the actual benefit of the procedure

Summary

should be carefully weighed against the effort involved, particularly so if the disabled person tolerates only a few minutes in that position. The procedure should also be reconsidered where significant weight bearing and/or a reasonably symmetrical position is not achieved. This does not mean that standing is contraindicated altogether, as there may be other valid reasons for continuing with a standing programme. It is well recognized that children with severe motor impairment, on reaching adolescence, tend to ‘go off their feet’. It is at this time that seemingly mild to moderate contractures and deformities increase in magnitude. Many adolescents do not wish to continue with a standing programme, perhaps seeing little point in continuing with the procedure when it appears to have no functional benefit and is often uncomfortable.

CHECKLIST ON PRESCRIPTION OF ANY EQUIPMENT It is extremely important when prescribing equipment to recognize and discuss the disadvantages as well as the anticipated advantages of any type of support. Bergen et al (1991) endorse this point with respect to equipment provided for postural support in children. An indication of the suitability of the equipment for the disabled person and his care

provider(s) is provided by answers to the following questions:

• Is it needed? • Is it wanted? • Do they know how to use it? • Can they manage it? • Does it fit in with the home environment? • Is it socially acceptable? • Does it look good? Remember, the simplest solution is best and should generally be the first option.

SUMMARY The HCP, in attempting to provide support for the disabled person with little or no postural control, is challenged by the complexity of the human body structure and its inherent instability. Such is the difficulty in providing adequate support without compromising functional activity that it is surprising any success is achieved at all. Building a stable posture encompasses support throughout a 24-hour period. Ideally, varying periods are spent in lying, sitting and standing with the support appropriate to the individual and his circumstances. Guidelines and particular points for consideration have been discussed with respect to the differing postures, the means of support, the equipment needed and emphasizing the importance of matching prescription to circumstances.

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Case history 1

a

Figure 6.34 The young man demonstrates opisthotonus, i.e. the extended posture characteristic of profound brain trauma. N was involved in a road traffic accident that resulted in catastrophic brain damage. When seen some months post injury, his medical condition had stabilized but N remained in a vegetative state.

Figure 6.35 In (a) the opisthotonus is controlled in side lying: pillow supporting the trunk posteriorly, log roll stabilizing pelvis and flexed lower limbs, small pillow separating the arms from the chest, small pillow between feet. Passive movements of the upper limbs were severely limited. It was not possible to control the strong opisthotonus (extension of head and trunk in supine lying), even with use of a T roll (see p. 106).

On examination • N was unresponsive to any stimuli. • Sleep/waking cycle was evident. • He presented with severe opisthotonus, bilateral flexion of both arms. • Extended wrists and tightly flexed fingers, extension of the right leg, flexion and adduction of the left leg and plantar flexion of both feet (Fig. 6.34). • N was very stiff on passive movement of his limbs but it was possible to bend his hips and knees to 90 degrees.

Action taken N was positioned in side lying with support as follows: Hips and knees were flexed to 90 degrees. The position of the trunk was controlled with support behind the whole length of the trunk. The right-angled position of N’s legs was held using a log roll (see p. 109) placed between the thighs with the distal end of the roll resting on the bed. The log roll positioned in this way assisted in stabilization of the

Case History 1

b

Figure 6.35 (Cont’d) (b) In sitting, leaning well forwards over a wedge supported on table with a cut-out for the trunk. Note the degree of knee flexion signifying short hamstrings. pelvis and maintained flexion and external rotation of the lower limbs. A small pillow was placed between N’s feet to reduce pressure in this vulnerable region while another small pillow was placed under the upper arms to separate them from the chest (Fig. 6.35(a)). In sitting it was not possible to control N’s strong opisthotonus other than in a forward leaning posture (Fig. 6.35(b)). This was achieved in a wheelchair designed to support this posture while allowing the feet to move backwards, to accommodate N’s tight hamstrings (see also Fig. 6.19(b)).

Figure 6.36 N lies supine in a more relaxed posture than in Figure 6.34 some months following 24-hour posture control. muscle tension. Sadly, N did not recover beyond this stage but further contracture was avoided and N did not exhibit any signs of high pressure/shearing of the tissues.

Outcome Positioning in these postures was maintained throughout N’s stay in hospital. The photograph, taken approximately 6 months later (Fig. 6.36), shows some improvement in N’s ability to conform to the supporting surface with some apparent relaxation of

Key point This case highlights the need for physical intervention even in those profound cases where no recovery is anticipated and that opisthotonus can be controlled by 24-hour control of posture.

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Case history 2

Relevant information H was diagnosed with primary progressive MS in her early 20s. At the time she was newly married. She continued to work until her decreasing mobility made this too difficult. She quickly became wheelchair dependent and within 10 years she was a full-time user. At the time of referral H was totally dependent for all her needs. Her husband looked after her in the evenings and at week-ends. A care package provided by the local authority attended to H at all other times. H attended a day centre three times a week where she received physiotherapy. H was seated in a basic wheelchair with canvas seat and backrest (Fig. 6.37).

On examination: H presented with: • Chronic pressure ulcers under the ischeal tuberosities and lateral aspect of the right forefoot. • Tremor that interfered with functional movements of her upper limbs.

• Flexor spasms of her legs. • Contractures of the hamstrings. • Inverted feet. When seated in her wheelchair H held her arms tightly folded against her chest to control the tremor.

Action A home visit was arranged and the environment assessed, with particular attention to the bed. H used an alternating air pressure mattress. Night-time positioning in supine lying using a T-roll was explained and demonstrated to H’s husband. Prone lying and passive movements were carried out at the day centre. H was provided with a wheelchair, which: • Provided full support. • Accommodated the tight hamstrings. • Permitted use of both a tilted position and a forward leaning position as in Figure 6.19(a & b). • Secured abduction of the knee and controlled foot position with the use of straps designed for this purpose as illustrated in Figure 6.14.

Outcome The ischeal pressure ulcers gradually healed. The ulcer on her right foot was much slower to heal, possibly due to the fact that her circulation was poor. H put on a little weight. Her tremor and leg spasms were controlled. The contractures did not progress. H used her wheelchair in a forward lean position for an hour or so but only at the day centre, as care attendants did not have the time to do this at H’s home. H’s ability to hold her head erect is illustrated when seated and supported in a forward lean position as in Figure 6.19(b). When she was tired she was able to rest her head on the wedge quite comfortably.

Key points

Figure 6.37 H as she presented when first seen without sufficient support in her original wheelchair.

H’s supported postures in lying and sitting were not only comfortable but therapeutic, facilitating healing of pressure ulcers, controlling spasms and progression of contractures, all of which contributed to H’s physical wellbeing. Communication and cooperation between family care provider, agency care providers and day centre were essential in securing best compromise.

Case History 3

Case history 3

a

Figure 6.38 G’s habitual posture in supine (a) and prone lying (b); G‘s strong extension is evident in sitting (c).

Relevant information G was seen at the age of two and a half years. She was a lively child and lived with her grandparents. She had a diagnosis of quadriplegic cerebral palsy, with severe physical impairment and limited cognition. Later she attended a specialist nursery school and her education continued at a special school for disabled children.

b

involved with her care were advised to remove the tray at times and place an activity or toy on a stool in front of her to encourage a forward flexion of her trunk (Fig. 6.39(b)). G was provided with a T roll with a strap to secure the roll in place, without restricting her movement, for nighttime use. Approximately 4 years later, G was provided with a powered SAM system with a view to independent mobility, although it was recognized that this would be limited by her severe cognitive and physical impairment.

On examination G presented with very strong and well-established extensor behaviour (Fig. 6.38) in lying (a & b) and in sitting (c). Her reaction to every situation was to extend backwards.

Action G was provided with a SAM, i.e. a straddle forward leaning system for her main seating indoors (Fig. 6.39(a). Those

Outcome G never attained an ability to drive her chair other than to move it a few yards under supervision and with encouragement. However, when reassessed at the age of 6 years the extensor behaviour appeared to be less, as judged by her ability to relax conforming to the supporting surface (Fig. 6.40).

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difficult to assess the influence of maturity. However, it is likely that the appropriate support given to G did influence her physical condition up to the age when last seen. As a general point, evaluation should continue until growth is complete if the efficacy of any system is to be thought to play a part in preventing or minimizing the development of contracture and deformity in a given child.

c

Figure 6.38

(Cont’d) (c).

When last seen at the age of 9 years, her condition remained much the same. She had not developed any indications of scoliosis.

Key points Cognition plays a crucial role in the acquisition of skill. While it did appear that her strong extensor behaviour had been reduced over time and major contractures and spinal curves were not evident, it was not possible to attribute this directly to her physical management in sitting and lying as no record was kept of the time for which G used the postural support. In addition, over time, it is

a

Figure 6.39 In (a) G is provided with a SAM giving full support in a straddle forward leaning system, with the addition of harness used to maintain the forward leaning posture.

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b

Figure 6.40 G in supine lying approximately 4 years later, showing some improvement in her ability to conform to the supporting surface.

Figure 6.39 (Cont’d) In (b) the SAM used without the tray to facilitate G’s activity in front of herself.

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Newham D, Ainscough-Potts A-M 2001 Musculoskeletal basis for movement. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 7–36 Nwaobi OM 1987 Seating orientations and upper extremity function in children with cerebral palsy. Physical Therapy 67(8): 1209–1212 Ponton FT 1997 Orthotics. In: Goodwill CJ, Chamberlain MA, Evans C (eds) Rehabilitation of the physically disabled adult. Stanley Thornes Ltd, Cheltenham, p 657–685 Pope PM 1985a Physical management in long-term disability. Published by the Royal Hospital and Home for Incurables London, Booklet 1/85 Pope PM 1985b A study of instability in relation to posture in the wheelchair. Physiotherapy 71: 127–131 Pope PM 1993 Contracture: cause or effect of abnormal posture and gait in cerebral palsy? In: Case histories and terminology. Booklet No. 6, published by the Hare Association of Physical Ability p 67–84 Pope PM 1997 Management of the physical condition in people with chronic and severe neurological disabilities living in the community. Physiotherapy 83(3): 116–122 Pope PM 2002 Posture management and special seating. In: Edwards S (ed) Neurological physiotherapy, 2nd edn. Churchill Livingstone, Edinburgh, p 189–218 Pope PM, Booth E, Gosling G 1988 The development of alternative seating and mobility systems. Physiotherapy Practice 4: 78–93 Pope PM, Bowes CE, Booth E 1994 Postural control in sitting, The SAM system: Evaluation of use over three years. Developmental Medicine and Child Neurology 36: 241–252 Pope PM, Ainsworth K, Wade D 2000 Control of position in supine lying: the effect on loading and posture in multiple sclerosis subjects with spasticity. Poster presentation, MS 2000 Conference ‘The challenge of service provision’, Harrogate 12th–14th November Porter D 2004 Doctoral thesis: Development of deformity in children with cerebral palsy. Dundee University, Scotland Pountney TE, Mulcahy CM, Clarke SM et al 2000 The Chailey approach to posture management. Published by Active Design Ltd, 68K Witton Road, Birmingham, UK Pountney TE, Mandy A, Green EM et al 2002 Management of hip dislocation with postural management. Child: Care, Health and Development 28(2): 179–185 O’Brien M, Tsurami K 1983 The effect of two body positions on head righting in severly disabled individuals with cerebral palsy. The American Journal of Occupational Therapy 37(10): 673–680 Reid DT 1995 Development and preliminary validation of an instrument to assess quality of sitting of children with neuromotor dysfunction. Physical and Occupational Therapy in Pediatrics 15: 53–61

Reid D 1996 The effects of the saddle seat on seated postural control and upper extremity movement in children with cerebral palsy. Developmental Medicine and Child Neurology 38: 805–815 Reid D, Sochaniwskyj A 1991 Effects of anterior-tipped seating on respiratory function of normal children and children with cerebral palsy. International Journal Of Rehabilitation Research 14: 203–212 Reynolds 1978 The inertial properties of the body and its segments. Anthropometric Source Book IV, NASA Reference Publications p 1–55 Rose J, Gamble JG, Burgos A et al 1990 Energy expenditure index of walking for normal children and for children with cerebral palsy. Developmental Medicine and Child Neurology 32: 333–340 Schuldt K 1988 On neck muscle activity and load reduction in sitting posture. An electromyographic and biomechanical study with implications in ergonomics and rehabilitation. Scandinavian Journal of Rehabilitation Medicine Suppl. 19: 1–19 Scrutton D, Baird G 1997 Surveillance measures of the hips of children with bilateral cerebral palsy. Archives of Disease in Childhood 76: 381–384 Seedholm BB, Terayama K 1976 Knee forces during the activity of getting out of a chair with and without the aid of arms. Biomedical Engineering 11: 278–282 Shields R 2004 Neuromusculoskeletal plasticity following spinal cord injury: A paradigm shift? Presentation, 2nd Nordic Seating Symposium, Oslo April 28th–30th Sommerfreund J, Masse M 1995 Combining tilt and recline. Thames Valley Children’s Centre, 779 Base Line Road East, London, Ontario, Canada Son K, Miller JA, Schultz AB 1988 The mechanical role of the trunk and lower extremities in a seated weight–moving task in the sagittal plane. Journal of Biomechanical Engineering 110(2): 97–103 Stewart PC, McQuilton G 1987 Straddle seating for the cerebral palsied child. Physiotherapy 73: 204–206 Stuberg W 1992 Considerations to weight bearing programs in children with developmental disabilities. Physical Therapy 72(1): 35–40 Tasdemir H, Buyukavci M, Akcay F et al 2001 Bone mineral density in children with cerebral palsy. Pediatrics International 43(2): 157–160 Ward K, Alsop C, Caulton et al 2004 Low magnitude mechanical loading is osteogenic in children with disabling conditions. Journal of Bone Mineral Research 19: 360–369 Warren CG, Ko M, Smith C et al 1982 Reducing back displacement in the powered reclining wheelchair. Archives of Physical Medicine and Rehabilitation 63: 447–450 Zacharkov DJ 1988 Posture sitting and standing: Chair design and exercise. Charles C Thomas, Springfield, Illinois

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Chapter 7

Custom moulded seating systems CHAPTER CONTENTS Criteria for use 151 Established contracture and deformity 151 Unilateral movement 152 Active extensor behaviour 152 Severe lack of hip flexion 152 Severe hypotonus 153 Severe choreic, athetoid/dystonic movement 153 Pressure relief 153 Materials used in customized support 153 Thermoplastics 153 Carved foam 154 Interlocking systems such as Matrix, new Matrix and Lynx 154 Basic equipment required 154 Securing a successful outcome 155 Points to consider before prescription 155 Optimum body posture for casting/moulding 156 Positioning the disabled person for casting 158 Specific problems 161 Windsweeping 161 Anterior tilt of the pelvis 162 Extensor behaviour 163 Kyphosis 165 Lack of hip flexion 166 Lack of head/cervical flexion 168 Head support 168 Accessories 169 Use of half moulds 169 Customized seats 169 Customized trunk support 169 Summary 169 Bracing 169 Thoraco-lumbar sacral orthoses 169 Contraindications for use of a TLSO 171 References 176

The consequences of a lack of adequate support when intrinsic postural control is lacking or deteriorates are only too obvious (see Ch. 3). The support required at such a time will depend upon the degree of postural deficit. In the majority of conditions the support described in Chapter 6 will suffice. Many standard systems are modifiable to a degree and can accommodate a number of postural problems. Nevertheless, standard systems are designed for essentially standard people and conditions. Custom moulded seating systems offer a solution when the support provided by a standard system is inadequate or inappropriate. Customized support has been used for many years. Bardsley (1984), Nelham (1975), Nichols & Strange (1972) and Strange et al (1978), describe the use of thermoplastic vacuum moulded systems to support the more severe posturally impaired individual. Hulme et al (1987a,b) describe use of customized support to facilitate function while Washington et al (2002) report positive results on postural alignment in a group of very young children with motor impairments. Nwaobi & Smith (1986) found that adaptive seating improved pulmonary function in a small group of children with cerebral palsy (CP). To avoid confusion, ‘cast’ and ‘casting’ refer to the initial process of taking the shape. ’Mould’ and ‘moulding’ refer to the custom moulded seat insert.

CRITERIA FOR USE Custom moulded systems may be considered the preferred option in a number of differing situations, most of which relate to the more complex conditions. While not a set of rules, the following criteria are useful guidelines in determining when to consider use of such systems.

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CUSTOM MOULDED SEATING SYSTEMS

Established contracture and deformity The disabled person may present with such severe contracture and deformity that he is effectively unplaceable in anything like normal anatomical alignment of body segments, i.e. with a sitting ability graded Level 1, according to the definition given on p. 92. Customized support is indicated in these situations (Cook & Hussey 2002, Cooper 1995, Harryman & Warren 1992). It is often difficult to determine the line between being placeable with support and being unplaceable with support, as with customized support there are few people who cannot be placed in a modified sitting posture, but not in normal anatomical alignment. It is this criterion that identifies those people who are likely to require customized support, bearing in mind that many people with relatively minor constraints on being placeable in a sitting position, such as a moderate kyphosis, can be accommodated in a standard modular system. (For further detail on these situations refer to Ch. 6, Section 2). Thus the criterion unplaceable is dependent more on the magnitude and complexity of the presenting malalignment than on the existence of some anomaly of alignment. People with the following conditions are those for whom a custom moulded system is generally indicated:

unilateral limb movements are made. If lateral support alone is used the disabled person may be found resting heavily on the support, predisposing to discomfort, pain or even nerve compression in the axilla. When dealing with these situations it is essential to recognize that the problem does not lie in the movement itself but in the lack of adequate stabilization by the muscles on the contralateral side (see Fig. 2.14, p. 40).

Active extensor behaviour

nation of these. • Gross deviation of the lower limbs relative to the pelvis (windsweeping).

This term refers to the person who utilizes a total extensor pattern of movement when attempting any activity, pushing backwards with the feet, extending and frequently rotating the trunk, lifting the buttocks off the seat. The same pattern of movement is used to convey emotion of any sort and as a means of communication. It is sometimes erroneously, in this author’s opinion, labelled extensor spasticity or hypertonicity. When this activity is well established it is very difficult to modify. Standard seating should be tried first as it may be successful in achieving a compromise between the freedom of expression and stability of posture. However, there are many occasions when a customized mould offers the best means of compromise, i.e. allowing some expressive behaviour while securing some control of posture and position.

Unilateral movement

Severe lack of hip flexion

The situation arises on occasion, where the dominant movement or the recovered movement on one side, persistently disturbs the equilibrium of the disabled person when placed in a sitting posture (see Fig. 2.15, Ch. 2). It is important that such movement, especially if it is functional, should not be constrained. Indeed it should be encouraged, but the trunk must be sufficiently supported to allow the movement without disturbing equilibrium. A standard system is usually unable to support the trunk sufficiently as control around the shoulder is insufficient to prevent a lean to the side when

Ideally, a minimum of 90 degrees hip flexion is required in order to balance the trunk over the pelvis. This range facilitates a midline position of the pelvis and a lumbar lordosis. When bilateral limitation of hip flexion prevents achievement of this position the result is a posteriorly tilted pelvis, flexed spine and a predisposition to sliding out of the seat. Limitation of hip flexion on one side only results in rotation of the pelvis, forwards on the limited side, which is then pushed upwards into the thorax, creating pelvic obliquity. Bending is

• Established scoliosis, severe kyphosis or a combi-

Materials Used in Customized Support

coupled with rotation within the vertebrae, particularly in the lumbar region (Koreska 1977, Moore & Petty 2001) predisposing to scoliosis with ultimate impingement of the ribcage on the pelvis and lung compression, to say nothing of discomfort and pain (see Case History, p. 172).

Severe hypotonus It may be, and often is possible, to support the person who presents with severe hypotonus, a rag doll effect, in a standard seat with a total ‘buildup’ combined with a tilted orientation, as described in Chapter 6 (Section 2). There are occasions when this is insufficient to stabilize the posture and customized support is required, e.g., the child with the more severe type of spinal muscular atrophy (SMA type 1), the person with advanced muscular dystrophy or occasionally, the person with motor neurone disease.

Severe choreic, athetoid/dystonic movement People with significant uncontrolled, uncoordinated movement or the high amplitude tremor such as occurs in more malignant multiple sclerosis (MS), may require the additional support provided by a custom moulded system. When correctly made, custom moulded support provides greater trunk stability. In some cases the additional stability facilitates greater control and possibly functional use of limb movement, bearing in mind that controlling these neurological manifestations of impairment does not always unmask latent ability (Neilson & McCaughey 1982, Perry 1993).

Pressure relief It is rare, in these days of pressure relieving cushions and the variety of adjustable backrests, to require a custom moulded support solely for pressure reducing purposes. There are occasions where the disabled person is so frail that this type of support may be required, or where hot spots (localized high pressure areas) cannot be relieved by cushioning alone.

MATERIALS USED IN CUSTOMIZED SUPPORT Prior to casting for the customized support a decision is made with respect to the material to be used for the final seat mould. There are a variety of materials currently used for this purpose and no doubt others will become available as technology advances. All have their protagonists and detractors. It is not the purpose of this book to specify which material is the best; much will depend upon the preference, experience and skill of the person using a particular material. In theory all should work but knowledge of the properties of the different materials assists selection of the most appropriate for a given case. Technological advances in recent years, such as computer–aided carving and digital recording of the initial cast, have facilitated production and improved the appearance of the final product. However, improved appearance is no substitute for the considerable skill required to ensure appropriate and effective support. There are advantages and disadvantages attached to all of the materials in current use. Some of these, related to the most frequently used materials, are listed below and are given from a clinical perspective only. This is not intended as a comprehensive review of these materials and many of the points are arguable, depending upon circumstances and conditions.

Thermoplastics Plastics that can be heated and shaped around a cast are used in making the seat. These materials were used in making the original customized seats, the major development taking place in the 1970s. Advantages:

• Light weight • Low material bulk. Disadvantages:

• One point in time fit with minimal adjustment possible by heating the plastic. Therefore the casting has to be exactly right with no changes of posture anticipated. • Material is not ‘breathable’ therefore the occupant may find it hot as body heat is not dissipated. This

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problem may be reduced by drilling holes through the plastic shell. • The lining is adherent to the outer plastic shell and is not easily cleaned if soiled, therefore hygiene can be a problem. Some moulds have an additional lining that can be removed and washed with care. • The finished mould feels very rigid. This dissuades many people, although if the shape is compatible with that of the occupant it should not be uncomfortable.

Carved foam The initial shape of the bead bag cast is transferred electronically or manually to a four or five axis profiling machine. This carves successive layers into foam, creating a copy of the bead bag cast. Advantages:

• Use of different densities of foam for comfort and support. • The foam can be altered effectively for width and minor shape changes. • Looks and feels comfortable. Disadvantages:

• Can

feel hot as material is not ‘breathable’, although the mould can be perforated and is usually made in two sections, both of which assist in relieving this problem. • Can be bulky.

Interlocking systems such as Matrix, new Matrix and Lynx A system of interlocking segments which when malleable can be shaped around the cast or directly around the person when using a fitting frame (Fig. 7.1(a) & (b)). These are then locked together according to the shape of the cast or the posture of the disabled person. Advantages:

• Facilitates adjustment during the fitting stage. • Pushing a finger through the spaces between the segments can identify accuracy of fit. • Ease of adjustment for growth and more involved postural changes. • Gaps between segments allow greater air circulation.

• Easy to clean if soiled. • The new matrix incorporates

coloured flexible components, each colour signifying a different stiffness and give under load. This new version of matrix facilitates incorporation of lateral and front supports into the system.

Disadvantages:

• These moulds are generally labour intensive to make.

• They may be heavier than the other systems. • May not appeal aesthetically to everyone as the

finished seat may be perceived as ‘mechanical’. systems require higher levels of maintenance as the linkages can work loose, especially if the user moves a great deal as with the athetoid person.

• These

Most of these systems may be made in two sections: seat and back units. This arrangement increases the range of adjustments possible. However, split systems can slip out of alignment. Hybrid systems are also possible, for example a carved foam seat with a Lynx or Matrix backrest, or a standard seat with a customized backrest and vice versa. The reader is reminded that it is not the material that makes a successful mould but the knowledge and skill of those making it.

BASIC EQUIPMENT REQUIRED When making the initial cast, the necessary equipment should be to hand. The particular items will vary depending upon the material and method of casting. Whatever the method chosen, an adjustable chair in which seat depth and width, backrest angle and angle of tilt can be altered, is usually necessary. It is recommended that the cast be made in two parts, first the seat, pelvis and thighs; then the back, trunk and head, as it is difficult to control all the body segments at the same time. One or two casting bags, depending upon the method chosen, and a vacuum pump are required. A special frame is used when moulding directly onto the disabled person using the Lynx or Matrix materials. Initially the material is attached and

Securing a Successful Outcome

b

Figure 7.1 Linkage systems used in customised seating (a) Matrix (b) Lynx.

a

loosely ‘fashioned’ into the required posture before the person is placed into the seat. The Lynx or Matrix is then shaped around the person and the units are locked off as the support is built upwards from the seat base.

SECURING A SUCCESSFUL OUTCOME There is a considerable difference between a technically well-made mould and a successful outcome using the mould! The success of any moulded system is dependent upon:

• Identification of potentially compromising issues prior to prescription. • Securing the optimum position for casting/ moulding. • Accurate casting/moulding.

• Compatibility of fit of the finished product with the posture of the disabled person.

• Technical skill of operators in making the final product.

• Correct

positioning within the support in everyday use of the system. Correct positioning is critical to achievement of a successful outcome. No matter how well fitting the moulded seat, all that it can do is to hold the position once the person is placed within it; if placed incorrectly the moulded seat will be at best less effective and at worst will cause discomfort/pain and/or tissue damage.

Points to consider before prescription More support means more restriction of movement. While there are many benefits in use of custom moulded support there are always tradeoffs. These can only be identified by comprehensive

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assessment and must be carefully considered prior to prescription.

Interference with functional activity It is essential to ensure that the moulded support prescribed will not interfere with functional performance. One of the most important issues relates to transfers into and out of the support, e.g., a customized seat may compromise the disabled person’s ability to transfer sideways across surfaces or increase the difficulty of the care provider who uses a standing transfer. The support should not interfere with caring activities, for example when dressing or changing continence pads or in use of a urinal. It is often the case that moulded support will compromise some of these activities but it is usually possible to overcome most if not all difficulties, by altering the environment to suit the new support, e.g. height and angle of tables/work surfaces, or the method of carrying out care activities. It is only through first carrying out a full assessment that potential interference with functional activities can be elucidated. Where doubt still exists the conditions can be simulated using the casting bags to hold the person in the desired posture and orientation while testing ability to perform particular functional activities prior to casting the support.

Interference with manoeuvrability or transport The overall size and weight of the finished product should not compromise manoeuvrability or transport. A moulded seat inevitably adds weight to the system and usually alters the centre of gravity of the whole system, with implications for stability. The effect of this may be somewhat alleviated by using the most manoeuvrable wheelbase. The height of the moulded seat may interfere with access to vehicular transport. It is also important to check that the disabled person and/or the carer are able to manage the system.

Aesthetically acceptable Appearance is important. It is advisable to show the disabled person and his care assistant what the finished mould will look like, using photographs if

an example of the product is not available. A custom moulded seat does look different from a standard seat and the finished product may come as quite a shock if the people concerned have not been warned.

Consideration of all aspects of the disabled person’s lifestyle Finally, a successful outcome using custom moulded support is only possible if all lifestyle issues have been considered. Only then can the best compromise be made.

Optimum body posture for casting/moulding A correctly fitting customized moulded seat can only be achieved if those involved with the casting or moulding procedure have detailed knowledge of:

• The presenting postural configuration in terms of

the direction of the bending and rotation of body segments relative to each other and to the supporting surface. • The location and degree of any contracture and deformity. • Tonal variations such as spasms or dystonia when these are manifest. This information will identify those aspects of postural malalignment that can be corrected, those that must be accommodated, and the areas that can be used for support and control of postural alignment. Indeed it is difficult to see how customized support, or any type of support for that matter, can be made without this information.

Critical measures The following measures are critical when deciding upon the optimum body shape for moulding and the orientation in which the system can be used.

Trunk symmetry Trunk symmetry is determined by measuring the trunk vertically and diagonally as described in Chapter 5, p. 93. It is important that this measurement is taken in the most corrected position. Any measures must be considered in conjunction with examination of the spine posteriorly to determine the magnitude and direction of the curvatures. This is particularly important where a double curve exists, the trunk measures giving a false idea of symmetry.


Spots placed on the spinous processes and posterior superior iliac spines of the pelvis highlight the curves and the orientation of the pelvis.

Hip flexion

The optimum position of the pelvis will be compromised if hip flexion less than 90 degrees is not accommodated.

Hip abduction/adduction The degree of lateral movement at the hip joint relative to the pelvis is necessary to determine the degree of any windsweeping. Where windsweeping is established it should be accommodated, otherwise attempts to bring the legs to midline will result in rotating the pelvis in the same direction. Where deviation is severe a compromise must be made between pelvic orientation and windsweeping as the legs should fall within the wheelbase. To achieve this it may

a

be necessary to rotate the completed mould within the wheelbase. The direction and degree of deviation of the feet will usually correspond to the windsweeping and must be accommodated by the footrest if twisting of the feet and lower leg is to be avoided. In cases of extreme windsweeping, surgery may be considered but it is usually a last resort (see Ch. 8).

Knee extension Knee extension must be measured with the hip flexed to 90 degrees or to the maximum possible if flexion is limited. This measurement will identify any shortening in the hamstrings that must be accommodated by adjusting the position of the footplates relative to the seat. Head/neck flexion

Any limitation of forward flexion will influence any decision related to final

b

Figure 7.2 The wheelchair occupant in mould made to fit (a), twists within the seat in order to see forwards due to severely restricted neck flexion (b).

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orientation of the seating system. If placed in a tilted position when forward flexion of the head is limited the person will be looking at the ceiling or he will twist within the seat in order to see in a forward direction. In the case illustrated in Figure 7.2 the mould was made to fit well and was intended for use in a tilted position. However, the occupant persistently twisted himself in the seat. It became apparent that he did so in order to see what was going on around him as, with a 90-degree fixed extension of the cervical spine, he was unable to bring his head forwards. The alternative for use in these situations is support in a forward lean posture (see p. 168). Severe limitation of lateral flexion of the head may influence the position in which the rest of the mould is taken in order to make the best compromise between visual and postural requirements.

Positioning the disabled person for casting The success of the final mould in terms of support, control of alignment, pressure/shear relief and comfort is dependent upon the position in which it is made. The controlling feature is the overall shape and this must correspond exactly to the comfortably corrected shape of the disabled person. When being placed in the finished mould the occupant should fit like the missing piece of the jigsaw. If the shape is correct the mould does not have to be close fitting nor do the contours need to be very deep in order to provide the necessary support. The mould is incorrectly made if the disabled person must be made to fit or squeezed into it. A frequent mistake is in attempting to correct contractures and deformity within the finished mould. This is rarely if ever successful, rather it creates ill-fitting support that is uncomfortable. The aim of a well-fitting mould is not to correct but to arrest the progression of the contractures and deformity. When the mould is skilfully made utilizing gravity to secure a position and allowing space where correction may be anticipated, as with a kyphotic curve, some correction may occur. There are various methods of making customized moulded support. In the following section the method using casting bags is described but whatever the method chosen the same principles of positioning should be applied.

Initial casting As with all support related to postural control, the pelvis and thighs are addressed first. Maximum loading is necessary to effect the greatest imprint of pelvis and thighs, therefore the chair used for casting is placed in the upright position. A rough shape of the particular individual’s pelvis and thighs is made to correspond with the posture and measurements taken during assessment. With this information a surprisingly accurate shape can be made prior to placing the client in position, which generally saves time and reduces handling. Air is then withdrawn from the casting bag to maintain the shape. The disabled person is placed on the pre-formed casting bag. The feet are usually supported to avoid drag on, and undue compression under, the thighs, although there are occasions when this may not be possible, for example with significantly shortened hamstrings. The casting bag is then partially re-aerated and adjusted to the optimum shape around the person:

• The pelvis is held in as corrected a mid-position

as possible, by applying support posteriorly and laterally. • The thighs are supported as near to midline as possible without causing pelvic rotation. • Any lack of hip flexion is accommodated. • Rotation of the pelvis and the position of the thighs are controlled by extending the pommel to the kneecap (Fig. 7.3). • The deepest point of the thigh curve must correspond to the desired position of the thighs. The thighs will always fall to the lowest point of the curve under the effect of gravity. This is extremely important in all cases but particularly so in the control of pelvic rotation and accommodation of windswept deformity. • When base position is judged to be satisfactory in terms of alignment and control of pelvis and thighs, the vacuum is applied and maintained while the upper part of the body is cast. • If doubt of a correct fit exists, the person is taken out of the casting bag and the shape examined. Adjustments are made, the person replaced and recast if necessary. When satisfactory, casting proceeds.


Moulding the trunk and head With the disabled person’s seat position secured by the first casting bag, a second moulding bag is placed behind the upper trunk, including the head if an integral head support is appropriate, or a third small bag may be used to cast the head when the trunk is stabilized. The casting chair is then fully tilted to gain maximum loading on the casting bags. The arms are supported in the position in which they will ultimately be in the final seat mould. If not supported during casting the arms exert a drag on the shoulders, resulting in an unsatisfactory seat mould that restricts extension of the upper trunk. The procedure is as follows:

• Start

by ensuring continuity with the base support at pelvic level, checking that control of backward tilt of the pelvis is sufficient. • Apply control to the side of any convexity, with maximum support at the apex. • At the same time apply counter pressure diagonally upwards and laterally under any concavity on the opposite side, bringing the support upwards under the axilla and shoulder girdle region. • Control any rotation of the thorax by de-rotating the thorax relative to the pelvis and securing this position by casting around the retracted shoulder girdle and shoulder region, carefully avoiding impedance of shoulder movement. • If a posterior thoracic rib ‘hump’ exists on one side with a corresponding concavity on the opposite side it is essential not only to fully accommodate the rib ‘hump’ but to support the concavity equally well, otherwise the trunk will roll towards the concave side (see Fig. 7.4). • Accommodate any kyphosis as deeply as necessary to balance the head directly over the shoulders so that horizontal vision is achieved and to the point where, if the head is not supported, it will tend to fall backwards rather than forwards. • Avoid crowding the upper trunk, leaving room for extension and retraction of the shoulder girdle. • If an integral headrest is proposed, the position of the head can only be finally adjusted when the rest of the trunk and arms are positioned and supported optimally. The head is cast in the

Figure 7.3 Moulded seat with an extended pommel, designed to give greater control of pelvic rotation.

b a

Figure 7.4 Photograph highlights the control of lateral roll to the side of the concavity, by accommodation of the rib hump (a) and support of the concavity (b).

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position where it rests comfortably on the support. If the head falls out of the support when not held manually, the angle of tilt is insufficient, or more likely, a kyphosis has not been sufficiently accommodated to permit the head to be balanced over the trunk.

Modifications to the cast When the initial cast has been taken, any modification or adjustment should be made at this stage.

• The

cast is inspected primarily with respect to overall shape. In nearly all cases the indentation of a kyphosis needs to be deepened and any windsweeping enhanced as the casted impression is rarely sufficiently accommodated. • Particular attention should be paid to compatibility of the cast surfaces with the body contours. It is very easy to overlook this aspect of the casting process, especially in the lateral thoracic region. Frequently, on inspection the lateral thoracic support is convex rather than concave as it should be, to match the convexity of the thoracic ribcage. If not corrected the result is a reduced contact area with less holding power and possible discomfort. • The contour of the thighs is checked to ensure that the deepest point of the curvature corresponds to where the leg should lie. • The length of the pommel is examined. The lateral incline of the pommel is also important: a steep incline is used to hold a position close to the pommel whereas a gradual slope will encourage the thighs to roll away from the pommel. • The surface is checked for smoothness. Anomalous bumps are investigated to ascertain if true or artefact and smoothed if the latter. • The shape is then ready for digitizing or for making a plaster cast, from which the final seat mould is made. The more accurate the initial casting, the better the fit of the final product!

Intermediate fit of the moulded seat Provision of a moulded seating system may incorporate an intermediate fit. This is advisable wherever possible. It is especially so in all complex

cases when adjustments may be made and final trimming is marked. The position of footrest, headrest and any straps is usually checked at this time. The height of the seating system is assessed in relation to any other equipment or furniture and alterations made as necessary. When using the Matrix or Lynx materials for the final seat mould the intermediate fit provides an opportunity to ensure that the shape is accurate and the support sufficient to control the posture. The mould is covered with bubble wrap or similar transparent material to provide a comfortable interface during the fit. With the disabled person in the mould the interface is examined in detail by pushing a finger through the gaps in the segments. Areas of excessive pressure can be eased and areas where more support or contact is required can be pushed in. In very complex cases more than one fit may be required. While this increases the cost and effort in making the mould the final result is likely to be more satisfactory, saving time and money in the long term.

At final issue At the time of issue of the complete custom moulded seating system the fit of the mould is checked, adjustments are made where necessary, especially with respect to orientation on the wheelchair base. The accessories are fitted and checked. Only when everything else has been judged satisfactory should the headrest be adjusted. Finally, a balance test is carried out with the disabled person seated in the wheelchair, to ensure the new system has not adversely affected the stability of the wheelchair. A successful outcome is dependent upon how the system is used; therefore those most involved with the disabled person must be trained in its use. A simple demonstration is usually insufficient, especially where a number of care providers are involved. Ongoing review and monitoring of use is advisable and while undoubtedly time consuming, the benefits outweigh the additional use of resources. There is little point in issuing an expensive piece of equipment if those concerned do not know how to use it. Whatever the material used to make the mould it is good practice to check the skin of the disabled

Specific Problems

Use of a tilting and/or reclining system with a customised moulded system The use of a tilting seat or one that reclines, or a combination of both, will depend upon circumstances (Lange 2000, Sommerfreund et al 1995). It is at the time of casting that the most appropriate overall orientation within the wheelbase and/or angle of tilt is considered. A tilting system is usually the preferred option, as reclining the backrest only predisposes to sliding and shearing within the tissue layers increasing the risk of tissue damage. Tilting the whole system backwards counters this tendency to slide. (For further detail on use of tilt and recline refer to Ch. 6, Section 2, p. 119.)

SPECIFIC PROBLEMS Windsweeping

Figure 7.5 Raising the tray may facilitate independent feeding.

person for a few days after issue, for signs of any localized high pressure that might have escaped detection. It may be necessary on occasion to introduce the customized support gradually although if the mould fits correctly, this should not be routinely required. It is important to check the arrangement of the environment in which the disabled person is to function in order to ensure that remaining functional ability is not compromised by the more restrictive support and use of a tilted position. This will almost certainly require adjustments to work surfaces, e.g. use of an inclined book rest or raising the tray surface, as in Figure 7.5, may facilitate independent feeding.

Windsweeping, or deviation of both lower limbs to one side relative to the pelvis, is a common feature of severe postural deficit. It is usually, but not always, associated with scoliosis. This is not difficult to appreciate as the legs in the supine position act as a long lever dragging the pelvis into rotation to the same side as the deviation of the legs. Where windsweeping exists the degree of contracture is established at the assessment stage and verified before casting. The degree of correction possible is determined following the procedure described in Chapter 6, Section 2, Fig. 6.10, p. 116. An extended pommel in line with the deviated thighs is then used to maintain the position and thus control the tendency of the pelvis to rotate. The controlling feature is the leverage applied to the inner side of the abducted leg that constrains pelvic rotation (Fig. 7.6). The adducted leg should be positioned where it comfortably lies. Any attempt to overcorrect this leg towards abduction will counter the effect of the extended pommel and similarly cause the pelvis to rotate. The incline of the pommel provides additional control of thigh position and through that control of pelvic rotation, where windswept deviation exists. It is, however, important that the legs are contained within the wheelbase, otherwise

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a

Figure 7.6 In the extended pommel (a) is made to align with the deviation of the thighs, controlling the tendency of the pelvis to rotate towards the left side.

with a tilted position is insufficient, a custom moulded system may be indicated. When taking the initial shape in such cases, the seat mould is made as already described (see p. 158). With the anterior tilt of the pelvis corrected and secured, manually if necessary, and the seat in the fully tilted position, the upper trunk and shoulder girdle region are cast, applying support in a forward direction to counter the trunk extension. In the final mould it is the combined effect of the pelvic strap and upper trunk support that control the anterior tilt and trunk extension (Fig. 7.7). For this combination to be really effective the tilted position is highly recommended in order to gain the maximum control of pelvis and upper trunk. It is therefore vital that the disabled person has sufficient head flexion to be able to see forwards when tilted.

negotiating doorways and other narrow entries becomes a problem. On occasion, it is possible to do this without compromising pelvic position by rotating the whole mould within the wheelbase. In these cases it is essential that those involved with transferring the disabled person realize that the rotated mould is deliberate! Where gross windsweeping exists, compromise between the optimum pelvic position and the degree of windsweeping is necessary, bearing in mind that the least compromise the better. In the severest cases, surgery may be considered in order to obtain a degree of correction of the windsweeping. In general this should be considered as a last resort and requires immediate postoperative and ongoing management for a successful outcome (see Ch. 8).

Anterior tilt of the pelvis An anterior tilt of the pelvis, especially when it is severe, is a major challenge in seating. A mild anterior tilt can sometimes be managed by use of a broad padded pelvic strap, approximately 10 cm in depth, with a four-point fixation to secure the position (Fig. 6.9). It is essential that such a strap be fastened across the lower abdomen (see Ch. 6, Section 2). However, when such a strap combined

Figure 7.7 Arrows indicate the points of support combined with a tilted position for the control of the anterior tilting pelvis and extended spine seen in the photograph.

Specific Problems

a

Figure 7.8 The anterior tilt seen in this photograph cannot be supported or controlled by a pelvic strap and tilted position since contouring compounds the deformity. Support in a forward leaning posture is preferable.

There are occasions when the anterior tilt of the pelvis is so severe that it cannot be corrected sufficiently for the combination of tilt with pelvic strap to be effective (Fig. 7.8). When presented with this situation, anterior support may offer the best solution. Positioning the disabled person for these supports proceeds as follows: The seat base is cast in the usual way. The trunk is then held in the optimum forward leaning position with the arms supported. The casting bags are placed along the front and sides of the trunk. The bags are positioned to give maximum support along the length and breadth of the trunk. The final mould is fixed, usually, to a tray that wraps around the chest. Support for the arms is essential to prevent the upper trunk from hanging over the support and causing discomfort (Fig. 7.9(a) & (b)).

b

Figure 7.9 (a) Customized support when a forward leaning posture is indicated. (b) The front support is fastened to the tray and folds away for easy access.

Extensor behaviour As mentioned earlier (p. 152), this term describes the person who uses extension of the whole body to express any emotion or in any attempt to move. The extension is often accompanied by rotation between the trunk segments, which adds to the difficulty in controlling the posture (Fig. 7.10). It is another challenging situation. In this situation the aim is to secure the position in such a way that there is a degree of freedom for

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expression, but when relaxed the disabled person falls back into the desired position. This is difficult to achieve and a satisfactory solution can only be gained by the strictest attention to detail in the overall shape and areas of support, combined with a tilting system. The seat section is made in the usual way attaining as near midline position of the pelvis as possible, accommodating any windsweeping and holding the disabled person’s trunk well flexed over the base area. Where rotation between thorax and pelvis as well as extension of the spine exists, emphasis is placed on de-rotation of the pelvis and holding the position utilizing an extended pommel. The trunk section is moulded with the seat in maximum tilt. The upper trunk is de-rotated and aligned with the pelvis. For this to be successful it is essential that the pelvic position is secure. The casting bag is made to support through the convex

Figure 7.11 Carefully and accurately moulded support combined with the tilted orientation allows expression and recovery of position in the mould.

Figure 7.10 The well established extending behaviour used by some people with cerebral palsy as a means of expression.

side, while bringing the support upwards and under the more concave side with additional support in the mid-scapular region. Rotation of the trunk is controlled by bringing the support around the retracted shoulder girdle and shoulder to block rotation backwards. The position of the occupant in the wheelchair is secured with a wide padded pelvic strap that has four-point fixation. Once again some degree of tilted orientation is necessary to facilitate recovery of position after extension (Fig. 7.11). The degree of tilt necessary will vary with the particular individual.

Specific Problems

when the hips are flexed to 90 degrees significant shortening of the hamstrings is evident (Fig. 7.12) With the pelvis secured and the hamstring shortening accommodated, using the feet for leverage to push is much reduced. However, one must be careful not to totally prevent any means of expression by the disabled person. In children, the aim should be to modify the extensor behaviour by training in a forward lean position as in the SAM system (see Ch. 6, Section 2). Obviously, the earlier the training is started, the better the chance of success in achieving this modification of motor behaviour with concomitant reorganization of the neural networks.

Kyphosis a

b

Figure 7.12 Although knee extension does not appear limited in (a) the tight hamstrings are evident when the hip is flexed (b).

The key to any degree of success in these cases lies in limiting the movement without eliminating it altogether. The result is usually a compromise between allowing freedom for expression and stability of position. Lowering the footrests sometimes helps in reducing the effectiveness of the push against them provided that the position of the rest of the body has been effectively controlled. It has also been observed that although total extension is dominant, or perhaps because of it,

A fixed kyphosis must always be fully accommodated within the mould. This is addressed when casting the trunk section. It is essential that the arms are supported at the correct height in order to gain maximum trunk extension while the kyphotic curve is completely accommodated. If sufficient depth is not achieved the upper trunk will stand ‘proud’ of the support and will not be stable. Sufficient accommodation of the kyphotic curve has been achieved when, with the arms supported at the correct height, the head can be held in midline without extending the neck and would tend to fall backwards rather than forwards if head support is removed (Fig. 7.13). Tilting the system is necessary to stabilize the position of the whole body as without tilt sliding forwards is likely to occur. As it is hoped that some upper trunk extension may be gained over time with consistent use of a correctly made system of support, the mould should not ‘crowd’ the shoulder girdle. To do so would constrain extension of the upper trunk, effectively compounding the kyphosis. A gap from the apex of the kyphotic curve to the shoulders allows room for extension to occur. Such a gap does not affect support, as the upper trunk is rolling away from the support, consequently no loading, no support. Experience indicates that even when the curvature is established, it is possible that some improvement in upper trunk extension may occur in time, with use of the correctly moulded system, arm support and the optimum tilted position.

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a

Figure 7.13

b

An established kyphosis (a) must be fully accommodated if the head is to be adequately supported (b).

Lack of hip flexion

Unilateral limitation

A small amount of limited hip flexion, that is 10 degrees or so short of the 90+ degrees required for a stable sitting posture, can usually be accommodated in a standard seat by making adjustments to the level of the cushion or by reclining the backrest. The difficulty arises when the hip flexion limitation is more severe, is bilateral or is accompanied by significant windsweeping. In these situations, as a general rule, customized seating is the preferred option, provided there are no other contraindications such as impedance of transfer. The degree of limitation in hip flexion must be fully accommodated if a symmetrical pelvis is to be secured. However, the more open hip joint angle precipitates sliding forwards and therefore a combination of recline and tilt offers the best solution.

If the disabled person is placed in a standard seat that demands 90 degrees of hip flexion, any unilateral limitation will cause the distortion of pelvic position, described on page 152 and seen in Figure 7.14(a), predisposing to scoliosis. If this skewing of the pelvis is to be prevented, the seat must accommodate the limited range of movement in the hip joint. The degree to which this must be accommodated can be tested over the edge of a plinth (Fig. 7.14(b)). The dependant leg will tend to drag the pelvis forwards on the seat, a problem that is countered by providing adequate support under the ipsilateral thorax and by tilting the seat (Fig. 7.14(c)). It is fortunate from the support surface point of view that the side of hip joint movement limitation usually, but not always, corresponds with the concavity of the scoliosis (Pope 1997). Indeed, it

Specific Problems

a

b

Figure 7.14 In (a) the restriction in left hip flexion pushes the pelvis upwards. In (b) the pelvic obliquity is much reduced by allowing the left leg to hang down. In (c) the limitation in left hip flexion is accommodated in the mould. Support under the left thorax plus tilt counters a tendency to slide.

c

is hypothesized that the limited hip flexion is a major factor in determining the side to which the spine bends.

Bilateral limitation The problem of significant limitation of bilateral hip flexion poses a major constraint on achieving a sta-

ble posture in sitting, precisely because sliding is a problem and it is not possible to balance the trunk over the base of support. In consequence an erect posture is not possible. A so-called ‘erect’ posture is sometimes achieved by flexion of the spine. This solution presents problems of its own as the ‘slumped’ posture (see Fig. 2.10, Ch. 2) predisposes

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to sliding forwards on the seat, an extended cervical spine resulting in speech and swallowing difficulty, and lung compression predisposing to respiratory infections. It is therefore not a satisfactory solution in the long term. Accommodating bilateral limitation of hip flexion of, say, less than 45 degrees, is very difficult, although this may vary depending upon the individual case. To be stable under these conditions the disabled person would need to be almost horizontal. Surgery may be advised to gain more flexion in at least one hip, which combined with maximum support given to the trunk, usually in the thoracic region, and a tilted position, may provide sufficient stability.

Lack of head/cervical flexion The degree of head/cervical flexion is critical when considering any postural support. If the head cannot be brought into a midline position when the seat is tilted, the disabled person is unable to see forwards.

With mild limitations a satisfactory compromise can be made between the angle of tilt and the need to see forwards rather than upwards. There are some extreme situations, however, where the head and cervical spine is fixed in severe extension, sometimes as much as 90 degrees (Fig. 7.15). In these situations a different approach entirely is required, focusing on support in a forward leaning posture (see Fig. 7.9). The point at which the person is able to see forwards rather than upwards determines the degree of forward lean. The seat is cast in a forward lean posture as described above for severe anterior tilt of the pelvis.

Head support Supporting the head presents its own particular challenge. With customized seating systems, as with all systems, support for the head can only be considered when the posture of the rest of the body has been adequately stabilized. Particular attention must be given to arm support ensuring that there is no drag on the shoulder girdle likely to compromise support for the head.

Non-integral head support A separate adjustable headrest is the most frequently used method of head support and is the preferred option in most cases (refer to Ch. 6, Section 2).

Integral head support

Figure 7.15 In order to enable forward vision the person with fixed neck extension must be brought forwards until the head is midline and supported in this position.

A head support that is incorporated into the customized mould may be required in certain circumstances. This type of support is usually prescribed when the angle of tilt of the seating system does not change or where the disabled person’s head may become trapped in the space between the top of the mould and the headrest. When multiple or frequently changing carers are involved, an integral headrest may be the preferred option in order to reduce maladjustment, but each case must be judged on its own merits. When casting for integral head support, the casting chair should be at the angle in which the system is to be used most frequently. It is vital that the rest of the cast is satisfactory in terms of alignment and control of posture before casting the head. It is advisable to allow space for a small

Bracing

cushion to be inserted on change to a less tilted position, as the position cannot be adjusted once the mould is made. The head should be supported further forwards as the tilted angle is increased. As with a standard seating system, additional support in the form of headbands or neck collars should be used only to hold the head in place when the head is already well supported by the headrest rather than to support the weight of the head.

ACCESSORIES These are required in almost all cases where a custom moulded system is used. A pelvic strap, preferably one with four-point fixation, is required for safety and to provide additional control of pelvic position. The direction of pull of the strap should be counter to the direction of any pelvic rotation. Support for the arms is essential where a forward flexed spine is evident in order to reduce drag on the shoulders. It may not be so necessary where excessive extension of the spine is the problem, but this decision depends upon the particular circumstances. Other straps and harnesses may be used. However, these should only be used to maintain a position that is already appropriately supported. The reader is referred to Chapter 6 for further detail of use and application of accessories.

USE OF HALF MOULDS Customized support is often used in the form of half moulds, that is, the seat or the backrest alone is custom moulded for the particular individual.

Customized trunk support Custom moulded trunk support alone should be used with great caution. If one bears in mind that postural support should focus initially on securing stability of the base, i.e. pelvis and thighs, it will be appreciated that custom moulded trunk support alone should be used only when the seat base is judged to be sufficiently secure. The additional trunk support is used to control lateral flexion. The occasions when it is appropriate to use custom moulded trunk support alone are relatively rare. The use of moulded trunk support alone when the pelvis cannot be secured symmetrically as in cases of established contracture/deformity is not recommended.

SUMMARY In this chapter the conditions in which additional postural support is required over and above that provided by standard systems have been described. The criteria for prescription of custom moulded support have been suggested, together with the necessary pre-prescription questions that must be answered if mistakes are to be avoided and the best compromise made. As customized seating is necessarily restrictive it is essential to ensure that function is not compromised. The primary importance of positioning the person for casting the support was emphasized. General and specific points to be considered during the casting process were described in some detail. Custom moulded systems should be prescribed when it is evident that the complete build-up of a stable posture as described in Chapter 6 proves insufficient to stabilize body posture in optimum alignment or when the dimensions of the disabled person preclude use of a standard seating system.

Customized seats A customized seat may be used to secure a more stable base position. This situation is likely to arise where the immobility affects mainly the lower part of the body as in diplegia; with moderate athetoid CP, or in paraplegia following SCI or MS. A more secure base is likely to facilitate more effective functional use of the upper limbs.

BRACING Thoraco-lumbar sacral orthoses Thoraco-lumbar sacral orthoses (TLSOs) are custom moulded with the aim of supporting the spine of the person unable to hold himself erect. TLSOs were originally made of leather, but are

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now usually made of a thermoplastic material with soft lining for comfort. Spinal bracing was standard procedure for treatment of Duchenne muscular dystrophy (DMD) in the 1970s and 1980s (Hsu 1990). However, since that time long-term follow-up studies have shown that use of thoraco-lumbar sacral orthoses (TLSOs) does not prevent the development of scoliosis although they may reduce the rate of progression (Bernstein & Bernstein 1990, Hsu 1990, Rodillo 1989, Smith et al 1989). All researchers are of the opinion that in deteriorating conditions such as DMD and in spinal muscular atrophy (SMA) where the scoliosis progresses rapidly, or when it reaches not more than 35 degrees, surgery is indicated. Beyond this stage a more severe curve will seriously compromise lung function, increasing the anaesthetic risk during surgery. Hsu (1990) suggests that in DMD, surgery may be performed at a later stage due to improved surgical technique and ventilatory technology. However, careful assessment of each individual case is recommended. In a study of use of TLSOs in patients with quadriplegic CP the results were similar in that the scoliotic curves progressed. However, the parents and carers felt that the braces provided stability in sitting, which facilitated functional activities (Tangsrud et al 2001). Earlier studies (Gibson & Wilkins 1975, Wilkins & Gibson 1976) had indicated that an extended lumbar spine decreased the likelihood of developing scoliosis. Later studies have not supported this view, but the tendency continues with the majority of TLSOs being made to encourage lumbar extension. It is interesting to note that in the studies noted the position in which the disabled person is placed in sitting is not specified. It is assumed therefore that the individual using the brace is placed in an upright sitting posture. However, it is mentioned in these studies, and it is generally accepted, that the spine in the erect position is under considerable stress from the effect of gravity. Thus the erect posture is the most difficult to support when the muscles are weak, as under gravity the spine will buckle and bend (see Ch. 1). When considered in mechanical terms and given these conditions it is not surprising that TLSOs do little to prevent the development of scoliosis. The TLSO acts rather like a cylinder in which movement

laterally and antero-posteriorly is restricted, with little up-thrust of trunk and head against the direct pull of gravity in the erect posture. As a result the spine bends within the cylinder. It is argued that the contouring of the TLSO around and underneath the ribcage and over the pelvis such that the upper trunk is supported over the lower trunk, provides the support to counter gravity. In practice, however well moulded the TLSO, it is usually found that the load carried by the pelvis causes localized high pressure leading to discomfort if not pain and frequently tissue damage. There is no doubt that there are cases in which the forces are tolerated and the skin in the load bearing areas becomes hardened and adapted to take the load. Nevertheless, there is rarely an arrest of the progression of deformity. There is little doubt also that, having worn a brace for so long, many people feel very insecure without it.

To brace or not to brace? To facilitate functional use of the limbs and head There are times when the use of a well-made TLSO is indicated, which can greatly assist in providing additional stability to the seated posture, as the parents and carers stated in the study by Terjesen et al (2001). Jonsdottir (2004) also found a TLSO useful for an adolescent boy with cerebral palsy who had great difficulty in attaining an erect posture in sitting and while in a standing frame. As a result of the stability provided by the brace, functional use of the upper limbs is sometimes facilitated. In addition, support given to the trunk segments may be sufficient to stabilize the shoulder girdle and thus assist in the acquisition of head control.

To facilitate handling

In Chapter 1 it was noted that the body without its mechanisms of control behaves like a highly viscous fluid. As a result the very floppy person, in particular the floppy child with SMA, for example, is very difficult to handle in transfers and in positioning generally. The use of a TLSO provides some substance to the body and in so doing helps those in a caring role.

In combination with a tilting seat Although recent studies endorse the view that bracing does

Bracing

not prevent the development of deformity, it is suggested here that using the brace in combination with a tilted position may increase the benefit. The tilted position in sitting would take some of the load of the trunk and head, thus the brace may be better enabled to control segmental alignment. As with every use of a tilted position, sufficient head flexion is required to maintain a horizontal view. Usually the environment requires modification in order that the disabled person is enabled to function to the best of his ability. It would be interesting to determine whether bracing used in combination with the tilted position achieved better results with respect to deformity progression. This is work that is urgently required.

In combination with custom moulded seating

As a general rule there is little point in casting for a seat with a brace in situ, as the final seat mould will do nothing more to support the trunk than the brace itself. On the other hand, it is very important to find out, when either of these devices is being considered, whether there are plans for provision of the other device. It is not unusual for a custom moulded seat to be made while in the meantime the disabled person has been fitted for a brace or vice versa. There are occasions when a custom moulded seat may be appropriate for use in conjunction with a brace. These are the times when the person, usually a child, is very floppy and needs a brace to assist with general handling. Frequent putting on and taking off of the brace would not be practical when transferring the child into and out of the seat. In these situations it is usually sufficient to use a brace in combination with a modular, i.e. adjustable standard seating system, preferably one that tilts. Situations exist in which use of a conventional rigid TLSO is not recommended in combination with custom moulded seating, but the use of a soft brace such as a Lycra suit or some other such material could be of great benefit, for example in athetoid cerebral palsy or the floppy child, the one device complementing the other in the seat yet at the same time giving some support to facilitate handling. However, this combination of devices requires judicious consideration with respect to anticipated benefit, as it is very costly.

Contraindications for use of a TLSO There are few reasons when a supportive brace is completely contraindicated but serious consideration should be given in the following situations.

Decrease in vital capacity The main reason for not bracing is interference with lung excursion accompanied by a reduction in vital capacity. Tangsrud et al (2001) found a significant decrease with use of TLSOs in children with SMA, while Jonsdottir (2004) found that a new type of TLSO, the Stod Spinal Support, was less restrictive than the conventional TLSO.

PEG feeding While percutaneous gastrostomy (PEG) feeding would not necessarily prevent use of a TLSO, if the disabled person is being fed through a tube directly into the stomach, this would be a consideration.

High localized pressures Areas of localized high pressures often develop that are uncomfortable and predispose to skin damage.

Interference with functional activity The additional support afforded by a brace is used to facilitate function, but there are occasions when it may restrict the movement strategies necessary to function. Hsu (1990) reported an interference with walking strategy in a group of boys with DMD. In summary, bracing by use of a TLSO can be a useful adjunct in the management of people with severe postural deficit. Nevertheless, when used alone it will have little effect on the progression of spinal deformity. There are cases in which a brace is required to assist with functional activities and carer handling. It is suggested here that a brace used together with a tilting seating system may be the best compromise between functional and postural needs and may produce more positive results with respect to the development of scoliosis. Fundamentally, appropriate prescription is dependent upon having all the relevant information at one’s disposal.

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Case history 1

Relevant information MD, aged 29 when first seen, had a diagnosis of quadriplegic cerebral palsy. He was an only child and lived with his parents who were his main carers. He was totally dependent for all his needs. MD attended a local day centre three times a week. He was transported to the centre, seated in his wheelchair, in a minibus. He had never been functionally ambulant.

Presenting condition MD was profoundly disabled, both physically and cognitively. He was non-ambulant with no verbal communication and doubly incontinent. He was fed by mouth. He was very thin. MD presented with severe structural deformity; kyphoscoliosis convex on the left side, dislocation of both hips (anteriorly on the right side and posteriorly on the left side), impingement of the ribs on the pelvis on the right side with pressure damage over impinged area. The right lung was reported to be collapsed although this was not verified by auscultation or X-ray (Fig. 7.16 (a)).

On examination The presenting posture was largely uncorrectable. The main points were:

• Right hip flexion was limited to approximately • • • •

20 degrees. Left hip was fixed in adduction of approximately 20 degrees. MD had some active movement of the left arm but this was not functional. He was able to turn his head to each side, more to the right than to the left. MD used a Matrix moulded seat insert interfaced with a non-tilting wheelchair base which, in an upright position, compounded the postural attitude in lying (Fig. 7.16(b)).

Although customized, this seating system did not conform to MD’s shape or accommodate the limitation of his hip joint flexion, the seat angle being nearly 90 degrees. Thus when MD was placed in the seat, the right side of the pelvis was displaced forwards and upwards compounding the bending and rotation of trunk segments and impingement of thorax on pelvis. It is interesting to speculate whether the limited hip flexion on the right side was the initial cause of the

a

Figure 7.16 (a) MD in supine lying indicating the degree of deformity.

scoliotic bend concave to the right side. Some indication of correlation between these two features was found in a small survey of 36 adults with cerebral palsy who had never been functionally ambulant (Pope 1997). Not surprisingly, MD was extremely uncomfortable in the seat and tolerated it only in travelling to and from the day centre. At other times he was placed on the floor or in a ‘bean bag’.

Action taken As a result of the findings on examination and following discussion with those involved with MD’s care, the decision was made to provide a new customized support using Lynx as the support material. Surgery to increase movement at the right hip was considered but

Case History 1

c

b

d

a

b

Figure 7.16 (b) MD in a moulded seat that is compounding his deformity. excluded, as MD’s condition and general health were very poor. In addition, MD’s parents were opposed to surgery. Prior to casting for the seat, the areas to be used for support were identified. These were:

• The thigh of the left leg, as hip flexion was not limited on • • •

the left side. The apex of the convexity on the left side of the thorax. The lateral and posterior concavity of the right side of the thorax. Around and under the right shoulder and upper arm.

A cast was made correcting body alignment where possible, and accommodating the fixed deformity. By accommodating the lack of hip flexion and supporting under the right thorax, around the shoulder and upper arm, the impingement of thorax and pelvis was relieved. Lynx was chosen as the material in light of the complex shape and the need for a well-fitting mould. At the fitting

Figure 7.17 MD in the Lynx mould at the fitting stage: (a) accommodating the limited right hip flexion, support given (b) under the left leg, (c) to the convexity on the left side of the trunk, (d) under the concave right side, right shoulder and upper arm. stage the interface was examined by putting a finger through the space between the Lynx segments. Adjustments were made accordingly, which ensured support, control of alignment and distribution of pressure (Fig. 7.17). When completed, the moulded insert corresponded to MD’s posture. Finally, the mould was interfaced with a tilting wheelchair base. The completed system was used in the tilted position. This was essential to provide maximum loading of the support areas identified and to accommodate the right leg, which was hanging downwards.

Outcome By accommodating the lack of hip flexion and providing support under the concavity on the right side, the

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a

Figure 7.18 (a) MD in finished mould at issue. (b) MD some months later showing that some ‘straightening’ of body alignment has occurred.

impingement of thorax on pelvis was relieved and the pressure damage healed. MD was comfortable in his seat and able to stay in it for hours rather than minutes. He put on a little weight and altogether appeared to be a happier man. On review at approximately 6 months after issue of the system, a few adjustments were made to the Lynx seat to correspond with the ‘straightening’ that had occurred within the trunk (Fig. 7.18(a) & (b)). It would not be correct to say that the deformity had altered dramatically. Perhaps the most telling point was made by MD’s parents when they expressed their pleasure at having

b

been able to take their son away for the weekend for the first time in many years. This point has implications with respect to outcome measures and the need to incorporate unexpected outcomes into any measure (see Ch. 5).

Key points Provided with a well-fitting mould, a tilted orientation, regular and correct use, some improvement in alignment is possible. Any measure of outcome should allow for the unexpected.

Case History 2

Case history 2

b

Figure 7.19 In (a) the child uses his arms ‘commando’ style to pull himself along the floor, a method that compounds his ‘windswept’ deformity. (b) shows the custom–made trolley that provided mobility with anterior support and aligned the legs with the lower trunk.

a

GB was a young boy aged 8 years. He lived at home with his parents and attended a school for physically disabled children. He had a diagnosis of quadriplegic cerebral palsy, but his lower limbs were more seriously involved than his upper limbs. He could ‘commando crawl’, pulling himself along the floor using his arms. His legs were deviated to the right side with twisting of the pelvis relative to his thorax (Fig. 7.19). GB slept in the same prone position and would not tolerate alteration to his posture in bed. Consequently the asymmetry of posture was being reinforced at night and during floor activities.

In addition, to reduce the effect on the tissues when crawling, a trolley was made to support GB’s trunk and align the legs with the trunk (Fig. 7.19). In this, GB was able to pull himself along using his arms.

Outcome

Action

Key point

A customized mould was made for his wheelchair in the most corrected position possible.

People with complex conditions frequently require nonstandard equipment, which demands innovative solutions.

GB was able to use the trolley on smooth surfaces but the effort was too great on carpeted floors. Nevertheless he enjoyed the experience. Had the trolley been electrically powered it may have been more useful to GB.

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REFERENCES Bardsley GI 1984 The Dundee seating programme. Physiotherapy 70(2): 59–63 Bernstein SM, Bernstein L 1990 Spinal deformity in the patient with cerebral palsy. Spine: State of the Art Reviews 4(1): 147–160 Cook A, Hussey SA 2002 Assistive technology: principles and practice, 2nd edn. Mosby, USA Cooper R 1995 Rehabilitation engineering applied to mobility and manipulation. Institute of Physics Publishing, Bristol and Philadelphia Gibson DA, Wilkins KE 1975 The management of spinal deformities in Duchenne muscular dystrophy. A new concept of spinal bracing. Clinical Orthopaedics 108:41–51 Harryman S, Warren L 1992 Positioning and powered mobility. In: Church G, Glennen S (eds) Handbook of assistive technology. Chapman & Hall, London, p 55–92 Hsu JD 1990 Spinal care of the patient with Duchenne muscular dystrophy Spine 4(1): 161–172 Hulme J, Shaver J, Archer S 1987a Effects of adaptive seating devices on the eating and drinking of children with multiple handicaps. American Journal of Occupational Therapy 41(2): 81–89 Hulme J, Gallagher K, Walsh J et al 1987b Behavioral and postural changes observed with use of adaptive seating in clients with multiple handicaps. Physical Therapy 67(7): 1060–1067 Jonsdottir G 2004 Comparison of the effect of two different spinal orthoses on respiratory movements in individuals with CP and scoliosis. Presentation, 2nd International Seating Symposium. Oslo, Norway, 28th–30th April Koreska J, Robertson D, Mills RH et al 1977 Biomechanics of the lumbar spine and its clinical significance. Orthopaedic Clinics of North America 8(1): 121–133 Lange M 2000 Tilt in space versus recline: New trends in an old debate. Technology Special Interest Quarterly 10: 1–3 Moore A, Petty NJ 2001 Function of the spine. In: Trew M, Everett T (eds) Human movement, 4th edn. Churchill Livingstone, Edinburgh, p 203–224 Neilson PD, McCaughey J 1982 Self regulation of spasm and spasticity in cerebral palsy. Journal of Neurology, Neurosurgery and Psychiatry 45: 320–330 Nelham RL 1975 The manufacture of moulded supportive seating for the handicapped. Biomedical Engineering 10: 266

Nichols PJ, Strange TV 1972 A method of casting severely deformed and disabled patients. Rheumatology and Physical Medicine 11: 356 Nwaobi OM, Smith PD 1986 The effect of adaptive seating on pulmonary function of children with cerebral palsy. Developmental Medicine and Child Neurology 28(3): 351–354 Perry J 1993 Determinants of muscle function in the spastic lower extremity. Clinical Orthopaedics and Related Research 288: 10–26 Pope PM 1997 Evaluation of postures in non–ambulant adults with cerebral palsy. Presentation, Dundee 97 1st International Conference, Posture and Mobility Group, Dundee, Scotland Rodillo E, Marini ML, Heckmatt JZ et al 1989 Scoliosis in spinal muscular atrophy: Review of 63 cases. Journal of Child Neurology 4: 118–123 Smith AD, Koreska J, Moseley CF 1989 Progression of scoliosis in Duchenne muscular dystrophy. Journal of Bone and Joint Surgery 71A(7): 1066–1074 Sommerfreund J, Masse M 1995 Combining tilt and recline. Thames Valley Children’s Centre, London, Ontario, Canada Strange TV, Harris JD, Nichols PJ 1978 Individually contoured seating for the disabled. Rheumatology and Rehabilitation 17: 86–91 Tangsrud SE, Carlsen KC, Lund-Petersen I 2001 Lung function measurements in young children with spinal muscular atrophy: a cross sectional survey on the effect of position and bracing. Archives of Disease in Childhood 84(6): 521–524 Terjesen T, Lange JE, Steen H 2000 Treatment of scoliosis with spinal bracing in quadriplegic cerebral palsy. Developmental Medicine and Child Neurology 42(7): 448–454 Washington K, Deitz JO, White OR 2002 The effects of a contoured foam seat on postural alignment and upper extremity function in infants with neuromotor impairment. Physical Therapy 82: 1064–1076 Wilkins KE, Gibson DA 1976 The patterns of spinal deformity in Duchenne muscular dystrophy. Journal of Bone and Joint Surgery 58A: 24–32

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Chapter

Complementary procedures


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Reasons for referral Specific interventions

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Pharmacological interventions Surgery

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Plastic surgery

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Ensuring a successful outcome whatever the intervention 191 Reasons for unsuccessful outcome Measurement of outcome Summary References

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A book of this nature would not be complete without some discussion of the specialist services or procedures that are required to address problems that present where physical management procedures alone are unable to provide a solution. The term complementary is used in the context of an adjunct to physical management when additional input is required to maximize functional ability, to relieve secondary complications or to facilitate care activities. It is beyond the scope of this chapter and the expertise of the author to discuss the details and technicalities of the interventions themselves, nor is it intended to be a comprehensive review of all possible procedures in all possible situations. Interventions will be discussed as they relate to the most frequently encountered problems presenting in the severely disabled non-ambulant population. The literature cited reflects this limitation. Not all problems arising require aggressive intervention. Multidisciplinary assessment in setting relevant and realistic goals may assist in preventing inappropriate interventions (Pfister et al 2003) while early intervention, advocated in cerebral palsy (CP) by Hagglund et al (2005) and Scrutton & Baird (1997) may reduce the need for or extent of later surgery. A review of the various methods of treating contractures, both conservative and surgical, was carried out by Farmer & James (2001).

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COMPLEMENTARY PROCEDURES

Discussion will focus on the reasons why and when referral to another agency is indicated, the particular considerations prior to referral, points relevant to specific conditions and procedures, as well as the implications for the ongoing physical management in the more severely disabled person.

REASONS FOR REFERRAL The most frequently encountered problems where additional intervention is required to facilitate physical wellbeing and management are:

• Pain • Contracture • Deformity • Positive neurological features • Pressure ulcers • Undernourishment (refer to Ch. 10, p. 237). SPECIFIC INTERVENTIONS The specific problems presenting may be dealt with in a number of ways, usually pharmacological, surgical or a combination of both.

Pharmacological interventions Medication is generally sought for the relief of pain and to control the positive features of neurological impairment.

intervention. This is true in all situations but particularly so with respect to pain relief. The subluxed or dislocated hip joints of the nonambulant person with cerebral palsy at times give rise to pain that cannot be managed conservatively and surgery is indicated (see later in this chapter).

Positive neurological features It is necessary at times, to resort to complementary measures in order to manage or control spasms and spasticity arising from upper motor neurone (UMN) lesions and the movement disorders arising from extrapyramidal impairment. Medication delivered orally is usually the first option prescribed to control signs that are painful or that interfere with the function of the disabled person or care activities. The use of medication in this situation requires very careful consideration and monitoring with respect to the effect not only on the features themselves but also on function and care activities. The dosage must be carefully calculated and monitored with respect to the amount and timing of when it should be given (Thompson et al 2005). Continued monitoring is essential if the best effect from medication is to be achieved, especially in the long-term user. It is not unusual for a disabled person to be taking a cocktail of drugs with one item countering the effect of another. The HCP most involved with the disabled person is ideally placed to monitor the effects of prescribed medication, and to refer back as appropriate.

Pain

Upper motor neurone signs

Unless there are obvious reasons to the contrary, the more frequent causes of pain and discomfort relate to the posture and position of the individual. When pain persists, further investigation is necessary and other measures should be employed in an attempt to relieve the problem. Persistent and painful spasms may be controlled by positioning the person appropriately (see Ch. 6) in conjunction with antispasm medication. Analgesics may be necessary prior to performing passive movement in painful joints that will inevitably become stiffer without such movement. Interventions of any kind should be introduced serially in order to isolate the effect from any other

Oral medication Nevertheless intermittent spasms and spasticity may interfere with function and care activities in which case medication such as dantrolene, baclofen, tizanadine and diazepam are prescribed. Cannabis has been used for the relief of pain and spasticity in MS and other conditions (Baker et al 2003, Corey 2005) and is currently undergoing large-scale trials in the UK.

The spasms and spasticity associated with UMN lesions are not always painful and not all spasticity is a problem. In some cases, usually in paraplegics following spinal cord injury (SCI) or in multiple sclerosis (MS), spasticity of the extensor muscles of the legs may be beneficial when standing or walking.

Specific Interventions

The HCP must be aware of the side-effects that may accompany oral medication; these are fatigue, drowsiness, and sometimes nausea and confusion (Meythaler et al 2001). They may also contribute to bowel sluggishness with resultant constipation due to the overall effect on intestinal muscle (Norton 2004). Regular review of effect and dosage is essential. When the spasms or spasticity are or become a major problem, interfering with function or the management of the disabled person, other measures must be considered, e.g. neural block, which may be temporary or permanent, medication delivered intrathecally, and less frequently nowadays, nerve section, i.e. neurectomy.

Intrathecal baclofen infusion Baclofen delivered intrathecally, i.e. directly into the spine, via a pump inserted in the abdomen, may be considered when severe spasms and spasticity require high dosage to control the symptoms. The dosage needed when delivered intrathecally is much reduced, as are the associated side-effects (Meythaler et al 2001). Referral to a specialist centre is essential in such cases as assessment of suitability, feasibility, and calculation of dosage required in the particular circumstances is critical to a successful outcome (Leary et al 2000, Thompson et al 2005). The high maintenance requiring regular monitoring and review, together with the care required on a daily basis, signify a costly procedure that is not suitable or practical in all cases. Sampson et al (2002) have published a cost/ benefit analysis of continuous intrathecal baclofen infusion, indicating overall benefit provided that cases are carefully selected. Gooch et al (2004) report high satisfaction rates using intrathecal baclofen infusion as judged by care providers 1 year following implantation of the pump in 80 people with CP and brain injury. Intrathecal phenol injection Phenol is a chemical agent that causes permanent neurolysis (destruction) of the motor and sensory nerves treated. Intrathecal phenol was introduced many years ago for the treatment of severe spasticity of spinal origin (Nathan 1959). Prior to the introduction of continuous intrathecal baclofen infusion in the early 1980s. The latter procedure became the preferred option because it was successful, did not cause

permanent damage and the effect was more readily controlled. In recent years there has been a resurgence in the use of intrathecal phenol in specific cases where severe spasms interfere with care activities and positioning the disabled person (Jarrett et al 2000, Thompson et al 2005, Williams et al 1995) It is usually a one-off procedure but may be repeated if the effect is less than expected. It is, on the whole, less expensive and requires less ongoing specialist monitoring than continuous baclofen delivered intrathecally. Assessment at a specialist centre is crucial. Phenol is introduced under surgical conditions. Strict criteria must be met before a recommendation is made, as the effect is not only permanent but also indiscriminate, blocking motor, sensory and autonomic impulses alike. The procedure may be considered when the disabled person:

• Is

non-ambulant, has no functional use of the lower limbs. • Has little or no sensation in the lower limbs. • Is incontinent of urine and faeces. • Is sexually inactive if a male, as erectile function in men may be impaired following injection, although this is a less absolute criterion. In carefully selected cases, usually in late stage MS where severe flexor spasms cause distress to the affected person and his care provider as well as confining him to a bedfast existence, intrathecal phenol may greatly improve wellbeing and care. The relaxation of the lower limbs is usually sufficient to enable the person to be seated again, even when significant contracture persists. Indeed, it is often the case that as a result of the muscle paralysis following use of phenol, the range of movement in the lower limbs may be increased with an ongoing physical management regime. It is essential in all cases where complementary intervention is required but never more so than following use of phenol, that post-intervention physical management is in place and ongoing, particularly postural support in sitting and lying. Following the intervention, the ensuing flaccid paralysis with complete instability of the pelvis about the hip joint and loss of sensation increase the risk of pressure ulcers, hip dislocation and severe

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contracture and deformity of the lower trunk and lower limbs (Fig. 8.1) unless preventative measures are taken. Indeed, if such measures are not in place then the decision to proceed with the intervention must be even more carefully considered. Phenol has been used as a focal nerve block but only with similar care and discretion in recommendation due to the permanent effect of phenol.

Botulinum toxin injection Botulinum toxin is increasingly used in the control of focal spasms and spasticity (e.g Brin 1997, Childers et al 2004, Graham et al 2000, Thompson et al 2005, Turner-Stokes & Ward 2002, Werring et al 2000) and reviewed by Richardson et al (2000). The more localized the problem and the smaller the targeted muscle the

Figure 8.1 The unmanaged post-intervention condition resulting from a combination of intrathecal phenol and later bilateral resection of the femoral head resulting from the dislocations that occurred with the flaccid paralysis. The pelvis has rotated anteriorly with the ASIS sitting between the thighs.

better the result is likely to be. The toxin is injected into the muscle in the region of the neuromuscular junction, inhibiting the release of acetycholine. Accuracy of injection is critical. Although the nerve block is permanent the clinical effect is reversible due to nerve sprouting and reinervation (Thompson et al 2005). The toxin takes effect within a few days following injection and lasts for a few months, the period varying with the individual. The fact that the effect is reversible is a great advantage in that it permits trial and assessment of the effect of neural inhibition. It provides a ‘window of opportunity’ for other treatments, to address the contracture element in the tissues and to facilitate functional use of a limb. It is very effective in resolving the problem of clonus (muscle jerks) that results from stretch of the muscle. Injections may be repeated as necessary although with caution. In some cases one or two injections are sufficient when combined with ongoing physical management. It is strongly recommended that the toxin is used in conjunction with physiotherapy and is directed towards the attainment of a realistic objective. It is important to bear in mind that control of the symptom does not necessarily ‘unmask’ latent functional ability. In addition it is not yet clear whether use of the botulinum toxin will have any significant influence on longer-term benefit such as a reduction in hip migration in cerebral palsy (Boyd et al 2001), especially in the more severe quadriplegic group of people. Hagglund et al (2005) have reported positive results in the medium term. As with all pharmacological agents used in the control of unwanted neural activity, it is imperative that the distinction is made between resistance due to neural activity and that due to soft tissue changes. It is not unknown for antispasm agents to be used where the limited range of movement and stiffness is predominantly mechanical. Usage in these situations will have little benefit and is a waste of scarce resources unless combined with measures to address contracture.

Extrapyramidal movement disorders

Medication for the relief of movement disorders attributed to extrapyramidal lesions is reviewed by Bogey et al (2004). The clinical presentation and associated


disease processes of tremors, rigidity of Parkinsonism, choreic movements, dystonia and myoclonus are described and discussed. Medication prescribed in these situations requires the same consideration and monitoring of effect as those noted above for the control of upper motor neurone signs. When pharmacological solutions fail, surgery may be indicated in some cases, e.g., stereotactic thalamotomy for the relief of rigidity in Parkinsonism that does not respond to drug therapy, or intention tremor in MS (Speelman & Van Manen 1984). Nevertheless, the procedure requires serious consideration as the effects are irreversible and the results vary. Other relatively new procedures such as programmable thalamic and basal ganglia stimulation via an implanted electrode are being used to good effect in many cases (Wishart et al 2003).

Main points common to all pharmacological interventions There are common themes evident in almost all publications noted relating to use of pharmacological agents for the relief of spasms and spasticity.

• Careful selection of cases is required so that the

most appropriate intervention is prescribed. • A distinction must be made between mechanical stiffness in the muscle and that due to neural activity. Pharmacological intervention may be appropriate when both are present, as a reduction in the active component may allow the contracture to be treated. • Used alone the procedures/interventions have little effect. They should be combined with postintervention therapy, physiotherapy, which may include splinting, functional electrical stimulation (Achman et al 2005, Hesse & Mauritz 1997) and training of care providers for optimum benefit. • Ongoing management, monitoring and review is required to prevent recurrence of the problem. • The goals must be specific, realistic and relevant in the particular circumstances of a given individual. • Studies have shown that a reduction in the clinical signs does not necessarily correlate with an increase in functional ability or quality of life

(e.g. Brashear 2004, Childers et al 2004, Meythaler et al 2001, Richardson 2000, Thompson 2005). • Function may be improved in some cases and is enhanced by intensive post-intervention training.

Surgery With increasing knowledge of factors contributing to the development of deformities in people with severe and complex pathologies and, perhaps more importantly, the adverse effect that these deformities may have on the person affected, i.e. pain, pressure ulcers, respiratory problems and loss of function being amongst the most frequently encountered, the current emphasis is on prevention. Increasingly it is believed that in many of the situations where the disabled person is not functionally ambulant, a predisposition to deformity may be modified by appropriate postural support and ongoing physical management procedures (Chs 6, 7, 10). However there remain a number of cases where structural deformity does become severe and well established, some but not all of whom may require surgery. The most frequently encountered interventions are: spinal fixation for the stabilization of a collapsing spine; reconstructive surgery at the hip joint or the feet and soft tissue release of contractures.

Spinal stabilization Spinal fusion is frequently recommended to correct scoliosis and/or arrest the progression of a curvature that is likely to compromise respiration, e.g. in young people with muscular dystrophy, and in people with quadriplegic CP. Spinal fusion offers a method of gaining stability to facilitate function, an erect posture and handling. Early rather than late intervention is advised where the pathology and/or scoliosis is progressing as in Duchenne Muscular Dystrophy (DMD) (e.g Chan et al 2001, Do 2002, Heller et al 2001, Smith et al 1989). The reason for this is that anaesthetic and surgical risk is greater with more severe scoliotic curvature when respiration and general condition of the person have deteriorated. The benefits are seen as a stable posture in sitting, cosmesis and quality of life (Bridwell et al 1999). There is debate in relation to the effect on respiratory function and

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life expectancy, for example, Gayet (1999) and Chataigner et al (1998) report little or no effect on these parameters while Galasko et al (1995) report an improvement in both. The situation is less clear in relation to scoliosis in the non-ambulant person with quadriplegic CP. Bernstein & Bernstein (1990) and Larsson et al (2002) report positive results of spinal surgery in terms of postural alignment and stability in sitting while Cassidy et al (1994) reported a high level of postoperative complications. In Banta et al 1998 legitimate arguments are presented for and against spinal surgery in these cases. The issue of the extent of the spinal fixation is also a matter of debate. Lubicky in Banta et al (1998), and Larsson et al (2002) argue, in relation to nonambulant quadriplegic CP and a heterogeneous group of conditions respectively, that including the sacrum in stabilization is not advisable, while this is advocated in studies relating to the muscular dystrophies (e.g. Alman & Kim 1999, Heller et al 2001) and CP (e.g. Bernstein & Bernstein 1990).

Particular considerations prior to surgery While spinal stabilization is undoubtedly of benefit in many cases, a number of issues require consideration prior to surgery. Effect on function and care activities It is essential to determine as far as possible if functional ability is likely to be compromised by the procedure. A full examination and analysis of the strategies used to function must be part of preoperative consultation. This should lead to the identification of the likely cause of the particular curvature. For example, a boy with Duchenne muscular dystrophy (DMD) with gradually increasing weakness within the trunk will bend and twist his trunk in order to maintain balance and midline position of his head. The position of his trunk becomes critical and even the slightest deviation will disturb equilibrium of his head position. Thus the specific scoliotic curve is determined by the balance strategy. Larsson (2004) in her long-term follow-up of 72 individuals, i.e. more than 1 year post-surgery, found that the clinical features, i.e. reduced respiratory infections, able to sit with less support, were improved but that self-care activities were compromised and that considerable time was needed to learn new coping strategies. (See also Case history 1.)

As already noted there are differing opinions relating to inclusion of the pelvis in the stabilization procedure. Each case must be judged on its own merits according to the particular deformity, strategies used to function and the remaining postural ability. Suffice to say here that there are advantages and disadvantages in both cases; pelvic fixation means greater movement restriction, but increased stability and vice versa.

Influence of limited hip flexion Limited hip flexion has also been linked with the occurrence and direction of the spinal curvature (Pope 1997). If the limited range of hip flexion is not accommodated in the erect sitting posture, rotation and elevation of the pelvis on the limited side predisposes to scoliosis (see Chs 6 & 7). If this problem is not addressed postoperatively, pressure problems and stress on the instrumentation results. Indeed, Lubicky in Banta et al (1998) includes sufficient hip flexion as a requisite for surgery (see also Case history 1). However, with appropriately contoured custom moulded seating, unilateral limitation of hip flexion may not necessarily contraindicate spinal fusion (see Ch. 7).

Implications for postoperative management A number of issues must be addressed in the management post-operatively. Stressed end points of fixation Whatever the extent of the fixation, the HCP, the disabled person himself and his care providers must understand that both ends of the stabilized section now become the weakest points of the spine; they are under considerable stress and are therefore extremely vulnerable to deviation (Fig. 8.2). The erect posture imposes considerable stress on the instrumentation, and failure is not unknown; Sink et al (2003) report problems with instrumentation at both ends of spinal fixation. While spinal fixation may enable an erect seated posture it should not be sustained over extended periods of time. Stress relieving postures such as supported forward leaning or tilted positions, at least for most of the time, are strongly recommended. Tissue viability The progression of a scoliotic curve is in most cases gradual, the rate increasing as the angle increases, thus the tissues gradually accommodate and adapt physiologically to the


Figure 8.2 Stress at the occipital end of the spinal fixation has resulted in the increased bending of the upper thoracic spine.

stress and loading (see Ch. 1). Surgical correction alters body segment alignment suddenly, with loading of tissues unaccustomed to recent weight bearing, thus predisposing to pressure problems (Fig. 8.3(a)). While alignment is improved following spinal fixation, complete symmetry is rarely achieved (Larsson et al 2002) and relief of pressure remains an issue. Varying the angle of tilt permits relief of pressure in the tissues and stress on the instrumentation, periods of rest and allows compromise between postural and functional needs. The tilted position does not necessarily compromise function provided that the environment is arranged accordingly (Fig. 8.3b; see also Ch. 6, p. 122).

a

b

Figure 8.3 (a) The effect of localized high pressure at the base of the fused spine as a result of sitting in an erect posture. (b) A tilting seating system is used to relieve pressure in the buttock region and stress on the instrumentation.

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Case history 1

Relevant information Ms M was a young woman in her mid-20s with a diagnosis of quadriplegic CP. She lived in an adapted flat in the community. She required assistance with most activities of daily living. Ms M used speech to communicate. Her upper limbs were less affected than her lower limbs. She was wheelchair dependent. She was able to feed herself and to pick up items from a table and sometimes she reached for items on the floor. Ms M had developed a severe scoliosis for which spinal fusion was recommended and agreed. Following surgery, Ms M was referred for postural support in sitting. On examination it was found that Ms M had severe bilateral limitation of hip flexion 50 degrees on the left and 40 degrees on the right.

Outcome Ms M could therefore only be seated at a significantly inclined angle, which in addition to compromising function, predisposed to sliding out of the seat and shearing within the tissues. Ms M was not able to carry out the activities that she had performed previously without complete reorganization of her environment. Indeed it is highly likely that the strategies Ms M used to function prior to surgery contributed to the development of her scoliosis. She was extremely pleased with the cosmesis, but was completely unaware that the surgery would affect her ability to function as she had before.

Key points A baseline assessment not only of functional ability but the strategies used is essential prior to surgery in order to properly inform the disabled person of the likely effects and to explore the modifications that may be necessary if surgery is agreed.

Hip surgery Surgery to prevent or correct hip joint dysplasia is commonplace in children with moderate to severe CP. It may involve soft tissue release alone or in conjunction with femoral and/or acetabular osteotomy. The usual aim of such intervention is to provide a stable joint for standing and walking and

to prevent the secondary problems associated with hip dislocation such as pain and restricted movement.

Soft tissue release There is a great deal of literature pertaining to adductor tenotomy performed in children with CP, sometimes combined with hip flexor release and/or obturator nerve crush, with the aim of limiting or preventing hip joint sub- or dislocation (e.g. Cornell et al 1997, Cottalorda et al 1998, Presedo et al 2005, Sindelarova & Poul 2001, Terjesen et al 2005, Turker & Lee 2000). The majority of these publications report benefit of the procedure in limiting hip dislocation when followed up over varying periods of time. The results were consistently better for the patients with a lower migration percentage (MP) and for the ambulant person than for the more severely affected individuals. Turker & Lee (2000) found less successful outcomes at long-term follow-up of 8 years (average) in their study of 45 people (90 hips) with quadriplegic CP. It is clear that results are linked to the severity of the condition and to whether or not the disabled person is ambulant. Reconstructive hip surgery Barrie & Galasko (1996) found that soft tissue release alone was insufficient to stabilize the hip joint and recommend that better results are secured when tenotomy is combined with osteotomy. In relation to the non-ambulant disabled person the criteria for surgery is less clear than for the ambulant person, with advocates for early intervention to prevent later joint degeneration and accompanying pain (Luhmann et al 2003). The importance of having a valid and realistic objective as well as bearing in mind that surgery is a means to an end rather than the end itself is particularly necessary when the affected person is highly unlikely ever to be ambulant or even to stand. To operate or not to operate on subluxed or dislocated hips is still a matter of debate in the largely non-ambulant population. For example Knelles et al (1999), Root et al (1995) and Wu et al (2001) report positive results of reconstructive surgery in 26, 31 and 23 disabled people respectively, the majority being non-ambulant with severe CP. Knapp & Cortes (2002) suggest that not all subluxed or dislocated hips require surgical treatment.


Postoperative management following reconstructive surgery In the person who is minimally or non-ambulant, management of posture and a regime of physical management (see Ch. 10) should be introduced as soon as possible postoperatively and continue indefinitely.

Postoperative management following palliative procedures Immediate postoperative management

Figure 8.4 The degree of windsweeping evident in this individual gives rise to major seating and hygiene difficulties for which surgery may be considered.

Surgery may be avoided in many cases, especially if pain is not the problem, by use of correctly moulded postural support in sitting (see Ch. 7) and control of posture in lying (see Ch. 6, Section 1). In the non-ambulant older person with sub- or dislocated hip joints the indications for surgical intervention are usually: intractable pain, most frequently the result of malformation and degenerative changes in the hip joint; severely restricted range of movement at the hip joint that compromises sitting, particularly windswept deviation (Fig. 8.4) with significant interference with hygiene; more rarely, dislocation of the hip joint secondary to flaccid paralysis following damage to the spinal cord. Surgery in these cases may take the form of palliative procedures such as resection of the femoral head rather than reconstruction of the joint (Leet et al 2005, Widmann 1999).

including passive stretch and positioning should follow these procedures to address the soft tissue contractures that accompany the previously restricted hip joint range of movement. If these are not addressed, surgery will have achieved little and any difficulty due to limited range of hip joint movement such as in sitting or hygiene will remain. A gradual stretch of tissues is emphasized, recognizing that all tissues including blood vessels and nerves, may have adapted to a shortened position. It is highly recommended that customized support in sitting be provided postoperatively in order to maintain the correction gained and to stabilize a now more unstable pelvis. Following resection of the proximal femur the pelvis tends to drop on the operated side with an accompanying anterior tilt of the pelvis. If these problems are allowed to develop they are some of the most challenging to support adequately in sitting (see Ch. 7). A tilted and/or supported forward leaning posture is likely to be required for much of the time.

Tenotomy/tendon lengthening Soft tissue shortening of significant degree may interfere with a physical management regime, which may require further investigation with a view to possible intervention. In the largely nonambulant population, surgical intervention is sought most frequently for the relief of knee flexion contractures, the adductors of the hip joint and the tendo-achilles complex of the foot. Significant contracture limiting range of movement in these areas may compromise rehabilitation of people with CP, following trauma such as BI, and compromises the physical management and care activities of people with static and deteriorating conditions. The procedure is discussed here only with relevance to the person with severe and complex disability.

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General points Before surgery A clear understanding of the cause of the contracture is vital if the outcome is to be beneficial. A contracture may result from lack of movement, inability to change position, or it may be the consequence of a compensatory postural or movement strategy used or adopted to facilitate function. If the latter, caution is required prior to surgery, with consideration for the effect that contracture release may have on function. If the conditions that caused the contracture persist, i.e. the disabled person continues to use the same strategies postoperatively, the result may at best have no effect, with inevitable recurrence or at worst, the procedure may compromise function (Pope 1993). The findings of Arnold et al (2000) for example, indicate that the adductors and medial hamstrings should not be lengthened, as they are not the cause of the internal rotation of the hip joint seen in the gait of some individuals with cerebral palsy. The distinction must be made between stiffness due to tissue shortening/contracture and that due to neural activity. In many cases it is due to both, but the skilled practitioner is usually able to reliably estimate the degree of contracture. In the release of contractures, the focus is on the musculoskeletal structures but it must be remembered that other soft tissues such as the nerves and blood vessels will have adapted likewise. In the experience of this author sustained immobilization in a lengthened/stretched position may well compromise blood flow and nerve conduction, the former leading to tissue necrosis while the latter predisposes to paresis. At times a decision with respect to tenotomy or splinting to lengthen the tissues is difficult. However, this author’s view is that anything other than minimal contracture is best treated surgically. In this way much time is saved and the rehabilitation process or ongoing management is facilitated. In addition, immobilization of the musculotendinous complex in children results in lengthening within the tendon rather than the muscle (O’Dwyer et al 1989). Nevertheless there are others who report good results following use of conservative measures to correct contractures (e.g Anderson et al 1988, Moseley 1997).

It is essential to ensure that the intervention is proportionate to the objective, the minimum intervention being advised, i.e., only those tissues necessary to achieve the objective should be released (Pope et al 1991), for example, Cornell et al (1997) concluded that percutaneous adducter tenotomy was as effective as open surgery combined with anterior obturator neurectomy on hip joints at risk of dislocation.

Post-surgery In the immediate postoperative period the affected tissues should be supported in the comfortably lengthened position with splints or other supportive devices. Further increase in joint range may be achieved gradually by daily stretching and serial splinting. Sustained immobilization is not generally recommended; the splints should be removed as soon as possible postoperatively, i.e within 2–3 days to ensure tissue viability and for daily passive stretches to gradually increase joint range with serial splinting if appropriate. The disabled person is introduced to control of posture first in lying, then sitting and standing as soon as his medical condition allows. It is during the early stage postoperatively that every effort is made to enhance any remaining functional ability and to exploit the opportunity that the contracture release has provided. Where recovery of function or movement is not anticipated, recurrence of the contracture is best avoided by an ongoing modified postoperative regime that focuses on postural support, including therapeutic positioning at night-time, e.g. prone lying, passive stretches to maintain length in the tissues, standing where possible and use of night splints where appropriate.

Points related to specific interventions These are points that relate to the particular contracture release. Hamstring tenotomy Short hamstrings increase the difficulty of stabilizing posture in sitting with higher risk of tissue damage; the constant repositioning increases the effort for the carer, and standing is compromised if not impossible (Fig. 8.5). The surgical procedure and postoperative management in a group of people with MS and severe


highly likely to change to extreme spasticity in extension, a problem that is more difficult to deal with than the original one (Fig. 8.7). • Proximal release of the hamstrings is not generally recommended. If considered, anterior support for the pelvis is particularly critical if the collapse of the pelvis illustrated in Figure 8.8 is to be avoided. • Currently, where the objective of hamstring tenotomy is to faciltate care and physical management procedures, intrathecal phenol presents an alternative to hamstring tenotomy provided other criteria are met (see above) and may be easier to manage postoperatively. • Botulinum toxin may be another alternative to tenotomy, but the muscle bulk is large and repeated doses may be required. In addition, it is an expensive means of achieving the same ends given the specific situation described.

Figure 8.5 The impedance of the short hamstrings prevents the individual sitting back in the wheelchair and results in a tendency to slide forwards on the seat. a

knee flexion contractures is reported elsewhere (Pope et al 1991). The most important points pertaining to hamstring release in addition to those noted above are:

• Where the objective is to ease the effort of care and

to secure a stable posture in sitting, simple tenotomy of the hamstring muscles will usually secure sufficient range of movement. Figure 8.6(a) and (b) illustrate pre- and immediate postoperative knee extension, in which overstretch of vulnerable tissue was avoided by minimal tissue release allowing gradual increase in range postoperatively. Katz et al (2004) monitored nerve conduction during the procedure thus avoiding overstretch. • If severe flexor spasms accompany the contractures, full extension is avoided as the pattern is

b

Figure 8.6 (a) Preoperative measure of knee extension. (b) Postoperative knee extension. Plaster cast applied with less extension to relieve the stretched tissues at the back of the knee.

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Figure 8.7 The spasticity in the lower limbs has changed from dominant flexor to dominant extensor behaviour following hamstring release. The incidence of this occurring is reduced by not pursuing full extension post-surgery.

Tendo achilles (TA) tenotomy/tenoplasty and/or equinovarus correction Surgical release of TA contracture and correction of equinovarus foot deformity is not always indicated. The procedures should be carefully considered if it is for aesthetic reasons alone. There is a large amount of published material relating to the management of foot problems, especially in children with CP. The reader is referred to this literature (e.g. Chang et al 2002, Greene 2000). Tendon lengthening procedures are performed in situations where contracture prevents weight bearing through the whole sole of the foot (Fig. 8.9(a)). Standing on the ball of the foot reduces the base area and raises the centre of gravity thus increasing the difficulty in standing erect. Ortho-

a

Figure 8.8 The pelvis has collapsed anteriorly following proximal resection of the hamstrings.

Figure 8.9 (a) The child is unable to place her feet flat due to the contracture within the TA complex


ses used to hold the foot in a plantigrade position tend to pull the body backwards due to the pull of the gastrocnemius muscle across two joints, the knee and the ankle, as illustrated in Figure 8.9(b) as the child tries to place her feet flat on the floor. Contracture of the TA is a common problem in children with CP and in other conditions requiring prolonged intensive care and induced paralysis such as in multi-system failure or following severe traumatic tBI. Surgical lengthening of the tendon speeds the introduction of weight bearing in the rehabilitation process. Chang et al (2002) reviewed 108 children treated for equinovarus foot deformity at a followup period of around 7 years and concluded that surgery was largely ineffective in relieving the

Figure 8.10 The curled toes following TA release, without addressing the inverted hindfoot, contracted plantar aponeurosis and long toe flexors.

b

Figure 8.9 (b) When the feet are placed flat she is unable to extend her knee due to the tight gastocnemius and this pulls her backwards.

deformity where the patient is non-ambulant. Where standing is not the objective, even with support, the position of the foot may be managed conservatively, using customized devices such as ankle foot orthoses (AFOs) or custom made boots. Nevertheless, recovery of ambulation may be possible as a result of reconstruction of a foot deformity. Pope (1992, Fig. 4.2) described such a case in a male several years post-severe brain injury. Careful assessment of the disabled person is the only means of identifying the person who may benefit from such intervention. The author’s experience in the management of surgical release of tendo achilles contracture in people following severe and profound brain damage highlights the following points:

• Prior to surgery the degree of involvement of the

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•A

standing regime with graduated weight bearing is introduced as soon as tolerated (Katz et al 2000).

Recovery of standing and walking generally prevents recurrence. Where this does not occur, an ongoing regime of night splinting combined with regular and frequent, i.e. minimum of 3 times a week supported standing should continue indefinitely.

Plastic surgery

Figure 8.11 Surgical lengthening of the TA without correcting the inversion of the hindfoot with the result that weight bearing compounds the inversion.

long flexor muscles of the toes and the plantar aponeurosis should be estimated and the alignment of the hind foot to the lower leg should be examined to determine whether inversion to midline is possible (McCluskey et al 1989). • During surgery on release of the contracted TA, extension of the toes should be checked. If the toes cannot be straightened, the tendons should be released together with the plantar aponeurosis as necessary. If these additional releases are not included, flexed toes and a ‘dropped’ hind foot may result (Fig. 8.10). • The hind foot is rotated to ensure a midline position is possible and the tissues released as necessary (McCluskey et al 1989). This point is critical as, following surgery, any deviation of the hind foot will be compounded by weight bearing (Fig. 8.11) and seriously compromises rehabilitation of standing and walking. • Postoperatively, the foot is immobilized and serial splinting is applied to secure the desired joint range of movement.

Pressure ulcers are managed conservatively in the main but surgical intervention is indicated when a particularly large and deep ulcer is intractable or slow to heal. A period of hospital admission is required where debridement, removal of infected and damaged tissue, and plastic surgery may be indicated. A regular physical management regime and therapeutic positioning should be continued while in hospital, as the disabled person is vulnerable to the contractures that develop quickly during an acute episode requiring admission. It is vital where plastic surgery is performed, that the circumstances causing the pressure ulcer have been identified prior to admission in order that these may be rectified before the person is discharged. There is little point in surgical repair of the ulcer if the disabled person is to be discharged to the same circumstances that caused or at least contributed to the pressure ulcer in the first place. The main points are illustrated in the following Case history.

Case history 2

Relevant information PC, a woman in her 40s, was diagnosed with secondary progressive MS some years previously. She was a fulltime wheelchair user and of average build, but due to the lack of space in the flat in which she lived she used a wheelchair that was too small for her. PC had functional use of her upper limbs and was able to self propel within the flat and to feed herself, although she experienced fatigue as the day progressed. She had an indwelling catheter for the management of urinary incontinence.

Reasons for Unsuccessful Outcome

Her husband was in full-time employment. PC was alone and in her wheelchair all day, except on the two days when she attended a day centre where she had physiotherapy and occupational therapy. PC developed a sacral pressure ulcer. The district nurse dressed the ulcer daily but it continued to increase in size.

Action Eventually PC was admitted to hospital for debridement and plastic surgery. She was discharged some weeks later when the wound had healed, but to the same situation that had caused the ulcer initially.

Outcome The wound broke down within a very short time of being at home. PC was again admitted to hospital where the plastic surgery was repeated. The situation remained the same on discharge home with the same result. In addition, PC developed knee flexion contractures as a result of the extended period in hospital without physical management.

Key point The important point in this case is the need to address the causative factors prior to discharge in order to avoid the waste of time and resources and the distress to the disabled person that accompanies such an unsatisfactory sequence of events.

ENSURING A SUCCESSFUL OUTCOME WHATEVER THE INTERVENTION A successful outcome can never be guaranteed. However, recognizing the factors that contribute to a successful outcome is part way to achieving success. These may be summarized as follows:

• The selection of the most appropriate action or intervention is dependent upon accurate identification of the problem and causation in a specific case. • The feasibility of a proposed intervention is dependent upon knowledge of all constraints pertinent in a given case, which itself is depen-

dent upon obtaining all relevant information through comprehensive assessment (see Ch. 5). • The objective of any intervention should be clear and specific and the goal should be relevant and realistic. • A baseline of the condition in terms of functional ability and the magnitude of any secondary complications are requisite prior to any intervention. • Ensuring that the intervention is not only valid with respect to the particular problem but is also proportionate for attainment of the objective. • The specific intervention is a means to an end and not the end in itself. It is essential that all those involved with care and the disabled person are clear on this point. The intervention provides a window of opportunity in many cases to increase function or to address other problems such as residual contracture. The window is usually short lived. • Often best results are produced from a combination of procedures, for example medication with splinting. • Where functional recovery does not occur, the introduction of ongoing management procedures must continue for the rest of the disabled person’s life if a recurrence of the original problem is to be avoided. • The aims of any intervention must be kept at the forefront of the HCP’s mind. • Multidisciplinary involvement is virtually always necessary and general agreement with the objectives and goals is all but mandatory (Deluca 1996, Pfister et al 2003, Thompson et al 2005).

REASONS FOR UNSUCCESSFUL OUTCOME The outcome is less than satisfactory in cases where:

• The expectations of the disabled person and/or his care providers have been unrealistic. • There has been inadequate or inappropriate immediate post-intervention and ongoing management. • Perhaps the most usual cause of recurrence or failure is the persistence of the factors or conditions that caused the problem in the first place.

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MEASUREMENT OF OUTCOME As with all interventions a measurement of outcome is essential but this must be from all relevant perspectives (see Ch. 5). An improvement in the clinical features alone is not sufficient measure of success. The lack of

functional outcome measures is noted in a number of studies cited, with some researchers recognizing the need for outcome measures sufficiently sensitive and valid in the situations pertaining to severe and complex disability (e.g. Richardson et al 2000). To date there are few, such measures.

Case history 3

a

Figure 8.12 (a) The young man is not able to sit in a conventional sitting posture. He has a previous history of multiple interventions including hip joints osteotomy, and various tenotomies. (b) He is seen in the most erect posture possible, limited by gross contractures of the lower limbs.

The case illustrates the pitfalls of aggressive surgery without accompanying physical treatment and objectives.

Relevant history T was a young man in his early 20s. T was living in a unit for people with severe mental and physical impairment attached to a large mental hospital. His past history was unclear, but it appeared that he had been diagnosed with quadriplegic cerebral palsy. During his earlier life T had had a series of surgical interventions, including adductor and hamstring tenotomies and reconstructive hip surgery. It was not known whether T had ever been ambulant but it did not appear that he had. At the time of meeting T required total care. When not in bed he was placed on a flat trolley, as he was unable to sit in a wheelchair (Fig. 8.12a).

b

On examination T presented with the characteristic flattened look of someone who has spent most of his life in supine lying.

References

Assessment of range of movement in the lower limbs revealed serious limitations of movement at all joints of the lower limbs, especially at the hips and knees. The main limitations were:

A form of straddle seat was moulded using Lynx material (see Ch. 7). The whole seat was then interfaced with the powered unit that had been developed for use with the previous unsuccessful seat.

• Fixed bilateral hip abduction at almost 90 degrees. • Very limited left hip flexion, only in the abducted

Outcome

position.

• Approximately 40 degrees hip flexion on the right side, somewhat less on the left side and only in abduction.

T had been referred for assessment to review possibilities for seating.

Action taken In light of the severe limitations of joint movement in the lower limbs a cast was taken of T’s pelvis and thighs in the optimum erect posture. Great care was taken to use as much surface area as was possible in order to distribute the load and so reduce discomfort.

SUMMARY An overview of a number of measures has been given that are pertinent to and in the context of the overall management of the disabled person with severe and complex disability. These measures are seen as complementary to ongoing physical

T was able to use the system for a period of up to 2 hours a day. As a result his mobility increased both indoors and outdoors, as did his ability to socialize. This was a difficult case with an unconventional solution (Fig. 8.12(b)).

Key points This case clearly illustrates the need for defined objectives and goals prior to surgical intervention; that surgery alone is minimally if at all effective; the critical nature of the immediate postoperative and ongoing physical management, if benefit is to be achieved and an even worse situation avoided; and the need for innovation in challenging situations.

management and are called upon when there is a need to address the complications that frequently accompany the more disabled population. The need for comprehensive assessment prior to any intervention, clear and realistic objectives and goals, multidisciplinary input and ongoing management and monitoring has been emphasized.

REFERENCES Achman JD, Russman BS, Thomas SS et al 2005 Comparing botulinum toxin A with casting for the treatment of dynamic equines in children with cerebral palsy. Developmental Medicine and Child Neurology 47: 620–627 Alman BA, Kim HK 1999 Pelvic obliquity after fusion of the spine in Duchenne muscular dystrophy. Journal of Bone and Joint Surgery 81(5): 821–824 Anderson JP, Snow B, Dorey FJ et al 1988 Efficacy of soft splints in reducing severe knee flexion contractures. Developmental Medicine and Child Neurology 30: 502–507 Arnold AS, Asakawa DJ, Delp SL 2000 Do the hamstrings and adductors contribute to excessive internal rotation of the hip in persons with cerebral palsy? Gait and Posture 11(3): 181–190

Baker D, Pryce G, Giovannoni G et al 2003 The therapeutic potential of cannabis. Lancet Neurology 2(5): 291–298 Banta JV, Lubicky JP, Lonstein JE 1998 Resolution: a 15 year old with spastic quadriplegia and a 60 degree scoliosis should have a posterior spinal fusion with instrumentation. Developmental Medicine and Child Neurology 40: 278–283 Barrie JL, Galasko CSB 1996 Surgery for the unstable hip in cerebral palsy. Journal of Pediatric Orthopedics Part B 5: 225–231 Bernstein SM, Bernstein L 1990 Spinal deformity in the patient with cerebral palsy. Spine 4(1): 147–160 Bogey RA, Elovic EP, Bryant PR et al 2004 Focused review. Rehabilitation of movement disorders. Archives of Physical Medicine and Rehabilitation 85 (Suppl. 1): S41–S45

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Boyd R, Dobson F, Parrott J et al 2001 The effect of botulinum toxin type A and a variable hip abduction orthosis on gross motor function: a randomised controlled trial. European Journal of Neurology 8 (Suppl 5): 109–119 Brashear A, McAfee AL, Kuhn Er et al 2004 Botulinum toxin type B in upper–limb post stroke spasticity. Archives of Physical Medicine and Rehabilitation 85(5): 705–709 Bridwell KH, Baldus C, Iffing TM et al 1999 Process measures and patient/parent evaluation of surgical management of spinal deformities in patients with progressive flaccid neuromuscular scoliosis (Duchenne muscular dystrophy and spinal muscular atrophy) Spine 24(13): 1300–1309 Brin MF, 1997 Dosing, administration and a treatment algorithm of use of botulinum toxin A for adult-onset spasticity. Muscle and Nerve (Suppl 6): S208–231 Cassidy C, Craig C, Perry A et al 1994 A reassessment of spinal stabilisation in severe cerebral palsy. Journal of Pediatric Orthopedics 14: 731–739 Chan KG, Galasko CS, Delaney C 2001 Hip subluxation and dislocation in Duchenne muscular dystrophy. Journal of Pediatric Orthopedics 10(3): 219–225 Chang CH, Albarracin JP, Lipton G et al 2002 Long term follow up of surgery for equinovarus foot deformity in children with cerebral palsy. Journal of Pediatic Orthopedics 22(6): 792–799 Chataigner H, Grelet V, Onimus M 1998 Surgery of the spine in Duchenne muscular dystrophy. Revue de Chirurgie Orthopédique et Reparatrice de l’Appareil Moteur. 84(3): 224–230 Childers MK, Brashear A, Jozefczyk P et al 2004 Dose dependent response to intramuscular botulinum toxin type A for upper limb spasticity in patients after a stroke. Archives of Physical Medicine and Rehabilitation 85(7): 1063–1069 Corey S 2005 Recent developments in the therapeutic potential of cannabinoids. Puerto Rico Health Sciences Journal 24(1): 19–26 Cornell MS, Hatrick NC, Boyd R et al 1997 The hip in children with cerebral palsy. Predicting the outcome of soft tissue surgery. Clinical Orthopaedics and Related Research 340: 165–171 Cottalorda J, Gautheron V, Metton G et al 1998 Predicting the outcome of adductor tenotomy. International Orthopaedics 22(6): 374–379 Deluca PA 1996 The musculoskeletal management of children with cerebral palsy. Pediatric Clinics of North America 43(5): 1135–1150 Do T 2002 Orthopedic management of the muscular dystrophies. Current Opinion in Pediatrics 14(1): 50–53 Farmer SE, James M 2001 Contractures on orthopaedic and neurological conditions: a review of causes and treatment. Disability and Rehabilitation 23(13): 549–558 Galasko CS, Williamson JB, Delaney CM 1995 Lung function in Duchenne muscular dystrophy. European Spine Journal 4(5): 263–267 Gayet LE 1999 Surgical treatment of scoliosis due to Duchenne muscular dystrophy. Chirurgie 124(4): 423–431

Gooch JL, Oberg WA, Grams B et al 2004 Care provider assessment of intrathecal baclofen in children. Developmental Medicine and Child Neurology 46(8): 548–552 Graham HK, Aoki KR, Auti-Ramo I et al 2000 Review recommendations for the use of botulinum toxin type A in the management of cerebral palsy. Gait and Posture 11: 67–70 Greene WB 2000 Cerebral palsy: evaluation and management of equines and equinovarus deformities. Foot and Ankle Clinics 5(2): 265–280 Hagglund G, Andersson S, Duppe H 2005 Prevention of severe contractures might replace multilevel surgery in cerebral palsy: results of a population-based health care programme and new techniques to reduce spasticity. Journal of Pediatric Orthopedics Part B 14(4): 269–273 Heller KD, Wirtz DC, Siebert CH et al 2001 Spinal stabilization in Duchenne muscular dystrophy: principles of treatment and record of 31 operative treated cases. Journal of Pediatric Orthopaedics 10(1): 18–54 Hesse S, Mauritz KH 1997 Management of spasticity. Current Opinion in Neurology 10: 498–501 Jarrett L, Richardson D, Lockley L et al 2000 Managing severe lower limb spasticity – Intrathecal Phenol can it still have a role? Multiple Sclerosis Clinical and Laboratory Research 6(3): Abstract 05, p 201 Katz K, Arbel N, Apter N et al 2000 Early mobilisation after sliding achilles tendon lengthening in children with spastic cerebral palsy. Foot and Ankle International 21(12): 1011–1014 Katz K, Attias J, Weigl D et al 2004 Monitoring of the sciatic nerve during hamstring lengthening by evoked EMG. The Journal of Bone and Joint Surgery 86(7): 1059–1061 Knapp DR, Cortes H 2002 Untreated hip dislocation in cerebral palsy. Journal of Pediatric Orthopedics 22(5): 668–671 Knelles D, Raab P, Wild A et al 1999 Complex reconstruction of subluxated and dislocated hip joints in spastically handicapped children. Zeitschrift für Orthopädie und ihre Grenzgebiete 137(5): 404–413 Larsson EL 2004 Long term follow up of functioning after spinal surgery in patients with neuromuscular scoliosis. Presentation, 2nd Nordic Seating Symposium, Oslo, Norway, 28th–30th April Larsson EL, Aaro S, Normelli et al 2002 Weight distribution in the sitting position in patients with paralytic scoliosis: pre and postoperative evaluation. European Spine Journal 11: 94–99 Leary SM, Jarrett L, Porter B et al 2000 A multidisciplinary, goal orientated approach to intrathecal baclofen therapy in progressive neurological disease. Journal of Neurology, Neurosurgery and Psychiatry 69: Abstract 412–413 Leet AI, Chhor K, Launay F et al 2005 Femoral head resection for painful hip subluxation in cerebral palsy: Is valgus osteotomy in conjunction with femoral head resection preferable to proximal femoral head resection and traction? Journal of Pediatric Orthopedics 25(1): 70–73

References

Luhmann SJ, Bassett GS, Gordon EJ 2003 Reduction of a dislocation of the hip due to developmental dysplasia. Implications for the need for future surgery. Journal of Bone and Joint Surgery 85A(2): 239–243 McCluskey WP, Lovell WW, Cummings RJ 1989 The cavovarus foot deformity. Clinical Orthopaedics and Related Research 247 October: 27–37 Meythaler JM, Grim-Renfroe S, Law C et al 2001 Continuously infused intrathecal baclofen over 12 months for spastic hypertonia in adolescents and adults with cerebral palsy. Archives of Physical Medicine and Rehabilitation 82: 155–161 Moseley AM 1997 The effect of casting combined with stretching on passive ankle dorsiflexion in adults with traumatic brain injuries. Physical Therapy 77(3): 240–247; discussion 248–259 Nathan PW 1959 Intrathecal phenol to relieve spasticity in paraplegia. Lancet ii: 1099–1200 Norton C 2004 Bowel management in multiple sclerosis. Gastrointestinal Nursing 2(6): 31–35 O’Dwyer NJ, Neilson PD, Nash J 1989 Mechanisms of muscle growth related to muscle contracture in cerebral palsy. Developmental Medicine and Child Neurology 31: 543–552 Pfister AA, Roberts AG, Taylor HM et al 2003 Spasticity in adults living in a developmental center. Archives of Physical Medicine and Rehabilitation 84(12): 1808–1812 Pope PM 1992 Management of the physical condition in patients with chronic and severe neurological pathologies. Physiotherapy 78(12): 896–903 Pope PM 1993 Contracture: cause or effect of abnormal posture and gait in cerebral palsy? In: Case histories and terminology. Booklet No. 6, published by the Hare Association of Physical Ability Pope PM 1997 Evaluation of postures in non-ambulant adults with cerebral palsy. Presentation at 1st International Conference Posture and Mobility Group, 8-12 September 1997, Dundee, Scotland. Pope PM, Bowes CE, Tudor M et al 1991 Surgery combined with continuing post–operative stretch for release of knee flexion contractures in cases of multiple sclerosis. Clinical Rehabilitation 5: 15–23 Presedo A, Oh CW, Dabney KW et al 2005 Soft tissue releases to treat spastic hip subluxation in children with cerebral palsy. The Journal of Bone and Joint Surgery 87(4): 832–841 Richardson D, Sheean G, Werring D et al 2000 Evaluating the role of botulinum toxin in the management of focal hypertonia in adults. Journal of Neurology, Neurosurgery and Psychiatry 60(4): 499–506 Root L, Laplaz FJ, Brourman SN et al 1995 The severely unstable hip in cerebral palsy. Journal of Bone and Joint Surgery 77A(5): 703–712 Sampson PC et al 2002 Functional benefits and cost/benefit analysis of continuous intrathecal baclofen for the

management of severe spasticity. Journal of Neurosurgery 96(6): 1052–1057 Scrutton D, Baird G 1997 Surveillance measures of the hips of children with bilateral cerebral palsy. Archives of Disease in Childhood 76: 381–384 Sindelarova R, Poul J 2001 Prevention of hip joint instability in patients with the spastic form of juvenile cerebral palsy. Acta Chirurgiae Orthopaedicae et Traumatologiae Cechoslovaca 68(3): 176–183 Sink E, Newton PO, Mubarak SJ 2003 Maintenance of sagittal plane alignment after surgical correction of spinal deformity in patients with cerebral palsy. Spine 28(13): 1396–1403 Smith AD, Koreska J, Moseley CF 1989 Progression of scoliosis in Duchenne muscular dystrophy. The Journal of Bone and Joint Surgery 71A(7): 1066–1074 Speelman JD, Van Manen J 1984 Stereotactic thalamotomy for the relief of intention tremor of multiple sclerosis. Journal of Neurology, Neurosurgery and Psychiatry 47: 596–599 Terjesen T, Lie GD, Hyldmo AA et al 2005 Adductor tenotomy in spastic cerebral palsy. A long–term follow–up of 78 patients. Acta Orthopaedica Scandinavica 76(1): 128–137 Thompson AJ, Jarrett L, Lockley L et al 2005 Clinical management of spasticity. Journal of Neurology, Neurosurgery and Psychiatry 76: 459–463 Turker RJ, Lee R 2000 Adductor tenotomies in children with quadriplegic cerebral palsy: longer term follow–up. Journal of Pediatric Orthopaedics 20(3): 370–374 Turner–Stokes L, Ward A 2002 Botulinum toxin in the management of spasticity in adults. Clinical Medicine 2(2): 128–130 Werring DJ, Richardson D, Sheehan G et al 2000 A double blind controlled trial to evaluate the role of electromyography guided botulinum toxin type A in adults with focal limb spasticity. Journal of Neurology, Neurosurgery and Psychiatry 69: Abstract p 413 Widmann RF, Do TT, Doyle SM et al 1999 Resection arthroplasty of the hip for patients with cerebral palsy: an outcome study. Journal of Pediatric Orthopedics 19(6): 805–810 Williams JE, Shepherd J, Williams K 1995 Rediscovery of an old technique to treat severe spasticity: intrathecal phenol. British Journal of Therapy and Rehabilitation 2(4): 209–210 Wishart HA, Roberts DW, Roth RM et al 2003 Chronic deep brain stimulation for the treatment of tremor in multiple sclerosis: review and case reports. Journal of Neurology, Neurosurgery and Psychiatry 74(10): 1392–1397 Wu CT, Huang SC, Chang CH 2001 Surgical treatment of subluxation and dislocation of the hips in cerebral palsy patients. Journal of Formosan Medical Association 100(4): 250–256

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Chapter

The value of horse riding and hydrotherapy in the management of severe and complex disability Christine Bowes and Barbara Cook


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Section 1 Horse riding

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History of the Riding for the Disabled Association 198 Benefits of riding

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Classifications in riding Economics of riding

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Section 2 Hydrotherapy

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The physiological effects of immersion Properties of water

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Hydrotherapy methods Published evidence Conclusion

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The value of exercise in maintaining health and wellbeing is now widely recognized and a variety of sports and recreational activities play a part in the rehabilitation of people with disabilities. The benefits of physical activity for paraplegics were recognized by Sir Ludwig Guttman at Stoke Mandeville Hospital in the 1940s. Since then the range of activities and numbers participating have grown and include archery, bowls, horse riding, hydrotherapy, basketball, rugby, tennis and table tennis, sailing, skiing and many more, leading to the introduction of the Paralympic Games in 1960 in Rome, following the Olympic Games of that year. To enable people with severe and complex disability to participate in sport, most of the activities are adapted for wheelchair users, whereas horse riding and hydrotherapy are an exception, as they provide an experience that is quite different from life in a wheelchair. Horse riding and hydrotherapy can enhance the physical, psychological and social aspects of the disabled person’s quality of life. As well as therapeutic value, these activities can provide challenge, competition and recreation, and it is possible that a disabled person may achieve as much as a nondisabled person. In this chapter we discuss the value of horse riding and hydrotherapy as an integral component of the physical management programme of people with severe and complex disabilities. These activities can complement and in some cases may substitute more formal therapies.

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THE VALUE OF HORSE RIDING AND HYDROTHERAPY IN THE MANAGEMENT OF SEVERE AND COMPLEX DISABILITY

Section 1 Horse riding Christine Bowes

People with disabilities have ridden horses for transport and for enjoyment for thousands of years. In a treatise on horsemanship, Xenophon, an ancient Greek historian wrote, ‘The outside of a horse is the best thing for the inside of a man’ and Hippocrates spoke of ‘riding’s healing rhythm’. It is only during the last century that the benefits of riding have been recognized by the medical profession and the general public. However, more research is needed to evaluate its efficacy. There is little evidence to support these currently perceived benefits. This section offers an introduction to horse riding as a therapeutic physical activity. The history of riding for the disabled person in the United Kingdom (UK) and the role of the Association of Chartered Physiotherapists in Therapeutic Riding (ACPTR) are discussed. It includes the benefits and contraindications of riding, the classifications in riding and is illustrated by two case studies.

HISTORY OF THE RIDING FOR THE DISABLED ASSOCIATION During the last century the benefits of riding were first recognized by Dame Agnes Hunt, founder of the first orthopaedic hospital in Oswestry in 1901, and by Miss Olive Sands, a physiotherapist, who started using horses for the rehabilitation of soldiers during and after the First World War (1914–1918). In the 1950s and 1960s, after the poliomyelitis epidemics of that time, the possibility of using riding as a therapy was explored, not only for people with polio, but for people with other disabilities. Momentum was gained when Liz Hartel won a silver medal for dressage at the Helsinki Olympic Games in 1952, despite being paralysed below the knees after contracting polio. In 1964 the Advisory Council on Riding for the Disabled was formed. At this time there were eight groups in the UK providing riding for people with

disabilities. By 1969 the number of groups had risen to 80 and the Council became the Riding for the Disabled Association (RDA), a charity. Carriage driving was also included in 1974 for those people who were no longer able to ride. The aim of the RDA is to provide disabled people with the opportunity to ride or carriage drive to benefit their health and wellbeing. The RDA is now a federation and is known as the Riding for the Disabled Association Incorporating Carriage Driving. There are over 500 groups providing riding and driving for approximately 25 000 people every week and around 500 000 each year in the UK. Those participating have a wide range and degree of disability, including neurological conditions such as cerebral palsy, muscular dystrophy, multiple sclerosis, head injuries, spinal injuries and spina bifida, musculoskeletal conditions such as osteoarthritis and rheumatoid arthritis, congenital absence of limbs and amputations, learning disabilities and visual and auditory problems. Physical ability may range from those who are ambulant and can mount the horse and ride independently, to those who need their horse to be led and require the assistance of two sidewalkers.

Association of Chartered Physiotherapists in Therapeutic Riding (ACPTR) The Association of Chartered Physiotherapists in Therapeutic Riding was founded in 1970 by Miss Stella Saywell FCSP and has developed in parallel with the RDA, but with an emphasis on the therapeutic component of the use of the horse, as opposed to the recreational and group activity model of the RDA. It became recognized as a clinical interest group of the Chartered Society of Physiotherapy (CSP) in 1989. Membership is open to physiotherapists with an interest in hippotherapy (from the Greek word

Benefits of Riding

‘hippos’ meaning horse), therapeutic riding and recreational riding for people with disabilities. Associate membership is open to physiotherapy students, occupational therapists, other allied professionals and physiotherapists from overseas. ACPTR has close links with the RDA and other therapists working throughout the world in this field. ACPTR training courses are designed to qualify physiotherapists to work with riders with a disability in groups within the RDA and ultimately, commensurate with their postgraduate qualifications, as hippotherapists treating individual riders. The three-part course ‘The Horse in Rehabilitation’ is nationally and internationally recognized. On successful completion of the course the physiotherapist will have demonstrated appropriate riding and horse-handling skills, enhanced knowledge of horse anatomy and psychology, risk assessment in the riding situation and most importantly, the ability to analyse the horse’s movement, assess each rider and select an appropriate horse to obtain maximum therapeutic benefit. A physiotherapist working within an RDA Group is part of the team, under the overall leadership of the group riding instructor. Physiotherapists are professionally responsible for advice given. They are not covered by RDA insurance and must have their own public liability cover, which is provided by the Chartered Society of Physiotherapy, if they are full members of this professional body. To avoid working outside their scope of practice, it is essential that therapists are members of ACPTR, have attended study days and workshops run by ACPTR and the RDA and have or are working towards Part 1 of the ACPTR qualification, ‘The Horse in Rehabilitation’. Responsibilities of the Group Physiotherapist:

• To

provide information on medical conditions and their relevance to riding, to the riding instructor and volunteer helpers. • Assessment of the rider, appropriate goal setting and planning of a therapeutic riding programme, in conjunction with the riding instructor. • To help with mounting and dismounting. • To help with handling and mounted exercises. • To train volunteer helpers. • Sidewalking. • To use professional skills to enhance the riding experience.

A physiotherapist with a Part 1 or 2 ACPTR qualification may also act as County or Regional Therapist within RDA, giving advice to other groups within their county or region. A Part 3 qualification is required to practise hippotherapy and backriding, and is only open to physiotherapists in the UK (occupational therapists and other professions supplementary to medicine may qualify in Parts 1 and 2 only). A Part 2 physiotherapist may, if working towards Part 3, practise hippotherapy under the supervision of a physiotherapist with a Part 3 qualification. The hippotherapist is fully responsible for hippotherapy sessions, which are on a one to one basis, and for training the team involved. A riding instructor may or may not be present.

BENEFITS OF RIDING Riding can be a useful adjunct in the physical management of people with severe and complex disability, and in many cases may be the only therapy that is available. However, it is not suitable for all people with a disability (see contraindications below). Riding has many benefits, physical, social and psychological.

Physical benefits 1) Facilitates the optimum sitting position and

postural alignment The astride position, with the open angle of the hip, that is, only a small degree of hip flexion, encourages an upright/midline pelvis and normal lumbar curve, facilitating sitting posture. Mandal (1984) states that the best sitting posture is obtained on horseback, ‘as the concavity of the small of the back is easily sustained’. The hips are abducted around the horse’s back and ribcage, which provides a broad base – this base will vary depending on the size of the horse. The straddle position was used in Pope et al’s study (1994) as part of the SAM seating system. The saddle seat assisted in the control of the pelvis and thighs, providing a stable base over which to balance and move the trunk. Where correct alignment is achieved in the sitting position on the horse, if a plumb line was dropped from the rider’s ear, it would pass through the

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rider’s shoulder, hip and heel. This is the classical riding position. It is important for the rider to sit in the correct position, as this will allow him to remain in balance with the horse and ride with maximum ease and efficiency. In Bertoti’s (1988a) study, the effect of therapeutic riding on posture in children with cerebral palsy was examined. Posture was assessed using a postural assessment scale designed by the author and administered by three therapists simultaneously. Alignment and body symmetry of five body areas: 1) head and neck, 2) shoulder and scapula, 3) trunk, 4) spine, and 5) pelvis were visually assessed and scored. Eight of the 11 children showed significant improvement. ‘At the spine, any postural scoliosis or exaggerated lumbar lordosis was decreased, especially in the children with spastic diplegia. All eight children demonstrated increased trunk elongation and more erect posture.’ In Swift’s book ‘Centered Riding’ (1985) the author recalls how when diagnosed with a scoliosis as a child, she was encouraged to ride by her therapist as ‘this was excellent therapy because riding uses both sides of the body equally’. For some people with a disability, riding may be the only activity they participate in where they can practise unsupported sitting.

2) Stimulates normal movement, balance and righting reactions Transmission of the three dimensional movements (lateral, anteroposterior and rotational) of the walking horse’s pelvis and spine to the rider’s pelvis and spine, is one of the most significant therapeutic features of riding. Therapy on the horse is dependent on the horse’s ability to move the rider’s pelvis passively through three dimensions, the rider learning to accommodate to this movement with balance and righting reactions, while at the same time being carried forward through space by the walking horse. There are approximately 100 impulses per minute to which the rider must respond. This reproduces the normal movement of the human pelvis when walking. Strauss (1995) calls this ‘gait specific trunk training’, which cannot be achieved by any other physiotherapeutic method. As Strauss (1995) states, ‘It permits walking without the legs bearing weight, walking only with the pelvis’. The horse effectively becomes the therapist.

However, in order to obtain normal symmetrical movement, it is important that the rider is sitting centrally on the horse’s back. More movement will be felt if the rider is sitting on a sheepskin than on a saddle. Kuprian (1981) reports that during hippotherapy, ‘Patients with a unilateral paralysis experience the sensation of a symmetrical stride, which is very important in treating asymmetry that has been caused by paralysis’. This stimulation of bilateral activity is beneficial in a number of conditions, for example hemiplegia, multiple sclerosis, spina bifida, limb deficiencies and even in upper limb paresis such as Erb’s palsy. Activities and games with the arms away from the body at waist height or above, may help in the correct alignment of the spine and the development of a normal lumbar curve, both of which facilitate postural control and balance.

3) Mobilization of joints Sitting astride the horse can help to maintain and/or improve range of movement, particularly at the hip joints, and this position also helps stretch the hip adductors. This is particularly relevant, for example, to people with spastic diplegic cerebral palsy, who typically walk with the knees flexed and the hips adducted and medially rotated. The astride position will help to counteract this pattern of movement. The pelvis is reliant on muscle action to maintain a midline (upright) position, and it is important that this position is facilitated, in order to encourage maximum transference of movement from horse to rider, facilitating mobilization of the joints at the hips, pelvis and spine and the stimulation of the balance response.

4) Normalization of muscle tone ‘Riding stimulates equilibrium reactions, improves postural control, activates the pelvis and hip joints and results in normalization of tone’ (Bertoti 1988a). Many subjective clinical improvements were noted; referring therapists reported that, ‘hypertonicity, especially extensor muscle hypertonus and hip adductor spasticity were decreased, contributing to improvement in achievement of functional movement such as sitting, stance and walking’. According to Mayberry (1978) and Bertoti (1988b), reduction in hypertonus was attributed to

Benefits of Riding

the rhythm of the horse’s movement and the corresponding proprioceptive input to the rider’s joints, facilitating the relaxation of spastic muscles. Conversely, increasing proprioceptive and vestibular sensory input through strong movement in the horse – active walking, trotting and brisk walk/halt transitions may increase muscle tone in the rider with hypotonus.

5) Improves general fitness Regular physical activity, such as horse riding, can make a positive contribution to health and fitness status. The health benefits to be gained from a physically active lifestyle are real, well documented and widely accepted by the medical professions, recognized by a working party of The Royal College of Physicians, convened in 1989 (Royal College of Physicians 1991), and by the general population. There are many studies confirming that physical inactivity is a major risk factor for many chronic diseases including coronary heart disease, stroke, obesity, high blood pressure and osteoporosis. In Shephard’s study (1990), people with disabilities such as amputations, spinal injuries and blindness demonstrated an above-average incidence of chronic diseases. Also according to Shephard (1990): ‘The disabled inevitably have an enhanced need for physical fitness in order to meet the demands of daily life’. It is therefore important that physical activity is recommended to people with a disability, not only to optimize body functioning, but also to prevent chronic conditions, as discussed above, and other preventable secondary complications, such as deformity and contracture.

6) A multi-sensory experience Many people with a physical or learning disability have some sensory deprivation. They have not been able to explore their environment, experience movement or take risks in the same way as their peers. The rider is able to cross terrain that would be inaccessible in a wheelchair. When riding, the rider experiences constant sensory input from the movement of the horse, moving through space, which in turn helps facilitate sensory input, for example, proprioception. Tactile, olfactory, auditory and visual senses are stimulated. The rider has the opportunity to feel the

texture and temperature of the horse’s coat and mane, for example, and to experience a variety of smells and sounds. Colour awareness (of the horse’s coat) and colour matching can be developed.

7) Develops spatial awareness Riding may help to develop spatial awareness, as riding takes place in a large school (riding arena), normally 40 metres by 20 metres in size. The rider is given the opportunity to experience the concepts of riding in straight lines or in circles, the concepts of in front, behind and being aware of the order of the ride, the sequencing of tasks, experiences change of direction – right and left awareness and change of speed.

Psychological and social benefits 1) Riding is an enjoyable, normal, recreational activity As Heine (1997) states, ‘Because therapy is fun, lack of motivation and therapy burn-out do not exist.’ Therapeutic riding can be seen as a useful adjunct to other physiotherapeutic modalities as part of a physical management programme (Koch 1994, Kunzle et al 1994). In Wallen et al’s study (2004) the importance of leisure activities for children with cerebral palsy was stressed, when selecting goals for intervention.

2) It is motivating It is motivating for example, for people with spinal injuries, many of whom have a sporting background or may have sustained their injury whilst taking part in a sporting activity, while others with long-term neurological conditions such as cerebral palsy and MS may also be enthused. The rider gets instant feedback from the horse and improvement in some riders can be seen in a relatively short time, progressing from individual therapeutic riding sessions to group riding lessons, where riding skills are taught, and eventually in some cases, to independent riding.

3) It empowers the rider to make choices — it gives the rider control The elation of sitting on a horse and achieving some or total independence in riding is extremely

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valuable. To be in control of the reins of a horse or horse drawn carriage, is very empowering to an individual who is a wheelchair user.

4) Teaches new skills — broadens horizons Riding gives the rider the opportunity to learn about horse behaviour and responses, stable management and horse care, for example, feeding, grooming, shoeing and use of the tack, as well as riding or carriage driving skills. These skills can help broaden horizons and open up new opportunities, such as social activities and riding holidays, therefore improving quality of life. Belonging to a club or association such as an RDA group can lead to new friendships and the development of a social support network.

5) It improves self-confidence, social image and counters social stigmatization Learning to ride gives a great sense of achievement and feeling of independence and freedom, leading to improved self-confidence and happiness. Campbell & Jones’ (1994) study showed that individuals who participate in sport have higher levels of psychological wellbeing than non-participants. Mackay-Lyons et al (1988) reported that walking velocity and psychological wellbeing were improved although this was inconclusive due to the small sample of subjects and their variable neurological status. The study concluded that physical and psychological variables in the MS population, may be favourably influenced by a riding programme. Further investigation was suggested using a longer programme of riding, and a larger and controlled sample of subjects with more closely matched neurological status. Riding also allows individuals to discover and maximize their abilities, improving self-confidence. Achievements in sport can also counter the social stigmatization of disabled people by demonstrating their potential and improving the general public’s perception of them (Shephard 1991, Sherrill 1986).

6) Riding encourages communication and social skills Riding encourages the rider to listen to and understand riding instructions, such as, ‘walk on’

and ‘whoa’ (halt). The complexity of the instructions can be progressed as appropriate for the individual rider. The rider learns to use a new vocabulary related to riding and horses. The ability to communicate with the horse, helpers and instructor is developed.

7) Participation in competition Improved riding skills can lead to local and national competition and for some, ultimately, the Paralympics and with that a great sense of achievement at all levels.

8) Animal/people bonding component Riding also has the animal/people bonding component, the rider learning to work in partnership with a large animal. Achieving new skills working with a horse is a great morale booster. It is often easier for people with learning difficulties or psychological problems to form a relationship with an animal, which does not ask questions or demand too much, and this may be the first step towards forming a relationship with another person (Bustad & Hines 1988, Corson et al 1975).

Contraindications of riding Riding is not suitable for all people with a disability. The following conditions are contraindicated:

• Uncontrolled epilepsy • Arthritis in the acute phase (including juvenile

arthritis) • Pressure sores • Conditions in the acute phase, for example, an exacerbation of multiple sclerosis • Brittle bone disease • Severe kyphosis and scoliosis, contracture and deformity • Behavioural problems that may cause a safety hazard to the rider, horse or staff • Severe allergies or asthma exacerbated by the horse or its environment • Obesity – different sizes and breeds of horses have different weight limits that they can carry, for example, a 14.2 hands high (hh) cob may carry up to 12 stones. (The ‘hand’ is the traditional standard measurement of the horse and is

Classifications in Riding

equivalent to approximately 10 cm or 4 inches). There are also manual handling issues, particularly for mounting, dismounting and supporting the rider for the therapist, instructor and/or volunteer helpers (Manual Handling Operations (MHO) Regulations 1992) • Fear of horses.

CLASSIFICATIONS IN RIDING The following classifications are used in the UK to describe the therapeutic use of the horse and riding for people with a disability: hippotherapy, therapeutic riding and recreational riding.

Hippotherapy Hippotherapy is the use of the horse as a physiotherapeutic treatment modality. It takes place within a confined area (usually a riding arena), with a soft sand or rubber surface. The disabled person does not usually wear a riding hat as the weight of the hat may interfere with the facilitation of head and trunk control. (The disabled person or their parents or guardian (if under 18) must give written permission agreeing to this). Treatment on the horse is dependent on the horse’s ability to move the patient’s pelvis and trunk passively through three dimensions: laterally, anterior-posteriorly and rotationally. The disabled person is placed in sitting or lying on the horse (usually on a sheepskin or blanket, which expedites the transmission of the movement and warmth of the horse), and accommodates to the threedimensional movements of the walking horse with balance and righting reactions, facilitated by the physiotherapist. The physiotherapist works with a horsemaster or experienced leader, who is in charge of the horse, and who produces the movement, speed/pace and transitions as requested by the physiotherapist. These changes in the stride and movement are used to challenge the patient’s balance and movement. The hippotherapist may be assisted by another therapist or experienced, trained side walker. Disabled people are referred for hippotherapy by their GP, consultant, therapist or self-refer and usually have more severe and complex disabilities

than those referred to an RDA group for recreational riding. For example, a child with spastic quadriplegic cerebral palsy, with very poor head and trunk control, balance and coordination would be very difficult for an RDA group with lay volunteer helpers to manage, in particular when mounting, dismounting and supporting the rider in a recreational group ride. A ‘rider’ with no head control should only be referred for hippotherapy or backriding (see below). Those participating in hippotherapy are usually children. Adults, due to their height and weight, cannot be accommodated on a horse that would be a suitable height to facilitate therapeutic handling by the therapist. There are also manual handling issues when treating adults on horseback. Most would be too heavy to be assisted in the changes of position commonly used in hippotherapy, without risk of injury to those assisting (Manual Handling Operations (MHO) Regulations 1992). Riding, that is, control of the horse, is not taught, but improvement in balance and movement control may lead to a progression to therapeutic riding and ultimately riding lessons.

Case history 1: Emily — Hippotherapy

Relevant information Emily was referred for hippotherapy by her parents when she was 3 years old. She has a metabolic disorder that prevents the development of the cerebellum in utero, leading to very poor balance and coordination.

Main problems

• Very poor sitting balance in long sitting or on a stool — unable to reach outside her base

• Tendency to w-sit (kneel sit), i.e., sitting between the • • •

legs with knees flexed and hips medially rotated to improve stability Bottom shuffled or crawled for independent mobility Could stand only with maximum support at the pelvis and knees — unable to walk Poor coordination.

Aims of hippotherapy

• To improve trunk stability • To improve balance and coordination

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Figure 9.2 Starting position, sitting astride facing forwards, stabilizing on hands. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.) chosen for his steady, even paces and tolerance of all the different positions used in hippotherapy. The photographs shown (Figs 9.1–9.9) were taken after Emily had been attending hippotherapy for approximately 1 year. By this stage her balance had improved and in order to make further progress a different horse, a Norwegian Fjord with a more powerful, forward going movement was used to challenge Emily’s balance. Emily, now 4 years old, was beginning to walk with a Kaye walker, with a pelvic strap support.

Outcome Figure 9.1 Stepping using a Kaye walker with a stabilizing pelvic strap. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

Emily continued hippotherapy for a further 6 months, and her balance and postural stability improved sufficiently to the point where she progressed to therapeutic riding.

Aims of therapeutic riding

Action

• Continue to improve strength and trunk stability • Continue to improve postural control and balance • Continue to improve coordination • Teach riding skills.

A hippotherapy programme was introduced. Emily rode once a week for half an hour. She sat on a sheepskin to facilitate the transmission of the three-dimensional movement and warmth of the horse. The horse used was

Emily has attended therapeutic riding for 18 months. At the age of 6 she uses her Kaye walker without the pelvic strap and is starting to stand independently. Coordination, strength and motor control are improving, resulting in an

• To

encourage the normal neuromotor developmental sequence, i.e. the ability to sit, stand and walk.


a

b

c

d

Figures 9.3 Unaided sequence, on the walking horse, from lying (a) to sitting (b, c) to forward flexion (d) for trunk strengthening. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

Figure 9.4 Relaxation in preparation for the next exercise, facing backwards. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

Figure 9.5 Elbow prop on horse’s hindquarters. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

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Figure 9.6 Full arm prop. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

Figure 9.7 No arm support. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

a

Figure 9.8 (a) Reaching outside base. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

c

Figure 9.8 (c) Reaching behind. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

b

Figure 9.8 (b) Reaching across midline. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

improved walking pattern (Emily used to walk with wide flailing legs, described by her mother as ‘spaghetti legs’). Her physical condition is well maintained and she has no contractures and deformities. Currently, Emily shares her riding lesson with another child who has athetoid cerebral palsy and therefore similar problems with balance and coordination. The session is taken by the same hippotherapist.


person and combines the movement of the horse with facilitation techniques, that is, provides support as necessary to the pelvis and trunk, to encourage postural control.

Indications

• Little or no head control • Inability to hold the trunk erect with little or no sitting balance

• Poor trunk stability • Poor postural alignment • Extreme weakness or fatigue • Extreme fear. Contraindications

• Adults

Figure 9.9 Finishing posture, stability improved. (Reproduced with kind permission of Georgina Cranston, www.georginacranston.com.)

– the weight limit for most horses would be exceeded by the combined weight of two adults, that is the disabled person and the hippotherapist (see point made earlier regarding weight limits). • Adults – there would be manual handling issues for the hippotherapist who has to be able to sit and balance behind the disabled person, (which is behind the horse’s centre of gravity), adapt to the horse’s movement and support and handle the client (Manual Handling Operations (MHO) Regulations 1992).

Aims of backriding Emily now rides on a saddle and can hold the reins, using them for steering and walk/halt transitions, however, her grip is weak. She has started to learn rising trot and has had her first dressage test. Emily is very serious about her riding and is keen to progress as far as she can. Therapeutic riding is an adjunct to physiotherapy and forms part of her overall physical management.

Backriding Backriding is a highly skilled technique and is included within the hippotherapy classification. The hippotherapist, with both riding and neurodevelopmental skills, sits behind the disabled

• To provide support or stability • To give therapeutic input using

facilitation techniques in a central position (as opposed to a lateral position, when standing beside the horse) • To increase feelings of security in the disabled person. The horse can be led or driven from behind on long reins, and must be well trained and able to take the extra weight. Two sidewalkers are present to give support to the disabled person or hippotherapist as necessary and are there in the event of an emergency dismount. Backriding gives the hippotherapist a unique opportunity to combine specific handling techniques from a central position, while utilizing the three-dimensional movements of the walking

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horse, to facilitate postural control in the disabled person.

Therapeutic riding In therapeutic riding, riding (control of the horse) is taught, in addition to the rider learning to balance and move, sitting astride a moving base (the horse), moving through space. This classification of riding is appropriate for the less disabled person, both adults and children, such as those with a neurological condition such as spinal injuries – paraplegia, multiple sclerosis, cerebral palsy – spastic diplegia, athetoid or ataxic types, head injuries and muscular dystrophy. The rider needs to be able to mount safely from a suitable mounting block/hydraulic ramp or hoist, and sit astride the horse, in an upright position, holding the head up. The aims of therapeutic riding will vary from rider to rider depending on their condition and ability, but may include improving sitting balance, postural control and postural symmetry, whilst at the same time learning the skills of riding. The session may be on a one-to-one basis or in a small group of two or three riders with similar problems, aims and objectives. The expertise of the riding instructor is required, unless the therapist has a riding instruction qualification, in addition to a ‘Horse in Rehabilitation’ qualification. The therapist assesses the rider, including a manual handling assessment and plans a therapeutic riding programme with the riding instructor. Teamwork between the physiotherapist and riding instructor is essential. The riding instructor should have sufficient knowledge of the medical conditions associated with physical and learning disabilities and understand their relevance to riding. The therapist should advise on the rehabilitation component of the riding programme and on the special equipment that may be required by riders with a disability. For example, a blanket or sheepskin may be more appropriate than a saddle for some riders who have limited abduction at the hip joints, and ladder reins instead of ordinary reins for a rider with the use of only one hand. The therapist should also advise on the most appropriate equipment to ensure safe mounting

and dismounting for riders, and train helpers and instructors in order to comply with manual handling regulations. The ultimate aim of therapeutic riding is that the rider will achieve a level of proficiency that will permit progress to recreational riding.

Case history 2: Margaret —Therapeutic riding

Relevant information The purpose of this case study was to evaluate the effect of horse riding on the postural scoliosis of a 61-year-old woman with multiple sclerosis (Bowes 2005). Margaret attends a multiple sclerosis (MS) group (a branch of the MS society), held once every 2 weeks for physiotherapy. She continued to attend the group during the case study.

Main problems

• Progressive weakness in left lower limb, particularly • • • •

left dorsiflexors and knee extensors — Margaret wears a hinged ankle-foot orthosis (AFO) during the day and uses two sticks when walking Postural asymmetry — scoliosis to the left Hip abduction limited on left side Diminished sensation in left foot Poor balance.

As a result of the weakness in the left leg and despite the assistance of the AFO and sticks, Margaret hip hitches on the left side when in the left swing phase of gait. This is probably the main contributing factor in the development of her postural scoliosis. The rationale behind the riding intervention was that when sitting astride a walking horse, Margaret would no longer need to hip hitch, and a more symmetrical posture may ensue.

Action Pre-riding measurements of trunk symmetry and hip joint range of movement, photographs (Fig. 9.13) and video (of walking) were carried out one week prior to the commencement of the riding programme. All measurements, pre- and post-riding, were taken by a

Classification in Riding

colleague to avoid experimenter bias and ensure validity (Hicks 2000).

Aims of riding

• To facilitate symmetry and stretch tight structures in the trunk, pelvis and shoulders

• To increase Margaret’s body awareness of symmetry/ asymmetry

• To increase range of left hip abduction • To improve balance • To ride independently at walk. Riding programme The riding programme took place over the course of 8 consecutive weeks in an outdoor riding arena during February and March. Margaret rode once a week for 30 minutes (an individual session).

Choice of horse The choice of horse was limited to two as Margaret weighed approximately 12 stones:

Figure 9.11 Riding Smarty, bending in and out of the blocks. (Reproduced with permission.)

• Holly — 15.2 hh dark bay mare, 7 years old, cob type.

•

Holly has a good natural rhythm and is well balanced and comfortable to ride. However, she has a long back — her neck and chest are reasonably well muscled, but her hindquarters are weak, resulting in a lack of impulsion. Slightly nervous temperament. (Fig. 9.10.) Smarty — 15 hh grey gelding, 6 years old, cob type. Very quiet, steady temperament. He has a long back and is not very well muscled. Large movements, not very straight. Better on the left rein. (Fig. 9.11.)

Mounting and dismounting Margaret was able to mount from the mounting block with assistance. She dismounted by lifting the right leg over the horse’s head with support.

Riding

Figure 9.10 Riding Holly, arm abduction with trunk rotation to right on right rein. (Reproduced with permission.)

Margaret rode mainly in walk including straight lines, circles, figures of eight and three loop serpentines. She practised exercises at halt and walk to help mobilize trunk muscles, particularly the left side flexors and trunk rotators, for example stretching forwards to touch the horse’s ears, her own toes and rotating round to touch

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a

b

Figure 9.12 A comparison of trunk symmetry (posterior view) when sitting astride the horse: (a) First session, – postural scoliosis concave to the left (b) Last session – improvement in trunk symmetry. (Reproduced with permission.) the tail. Elevating the arms (hands on hat, arms out to the side) at the walk stimulated balance reactions and stretched the trunk and shoulder girdle. Arms out to the side, combined with rotation to the same side as the rein, facilitated rotation to that side (Fig. 9.10). Margaret’s position was regularly checked for symmetry. Margaret used the reins for halting and steering and was encouraged to use her legs for impulsion (she had difficulties with her left leg due to poor sensation and generalized weakness), but her left leg improved with practice (Fig. 9.11). Margaret had a lunge lesson on the third session to improve balance, posture and body awareness. She also rode without stirrups, but felt happier and more secure with them. Margaret rode Holly in six out of the eight sessions. Although Smarty had the better temperament of the two, Margaret preferred Holly because she, ‘felt like her old horse Colonel.’ Also, Holly’s good natural rhythm and well-balanced movement meant that she was more suitable for the rider.

Margaret experienced trotting and could sit to the trot quite well. However, walking pace was used for the majority of each session. Video and photographic recordings were carried out during all riding sessions, with large marker spots (on top of clothing) — on inferior angles of the scapulae, spinous processes and PSISs, coracoid processes and ASISs (Fig. 9.12).

Post-riding measurements All the pre-riding measurements, photographs and videos were repeated, one week post-riding to identify any changes in the rider’s trunk symmetry and range of hip abduction (Fig. 9.13).

Outcome Objectively, trunk symmetry remained the same according to the trunk measurements, with little significant difference in the pre- and post-riding measurements. A


a

e

b

c

d

f

g

h

Figure 9.13 Postural symmetry — a comparison of (a, c, e, g) pre- (b, d, f, h) post-riding photographs in sitting and standing — anterior and posterior views. (Reproduced with permission.)

longer period of riding may have demonstrated greater change in the measurements. The most significant change was in range of hip abduction; the right hip increased from a mean of 45 degrees to 47.6 degrees, however, the left hip increased by 16.1 degrees from a mean of 32.5 to a mean of 48.6 degrees, resulting in a more symmetrical range of hip abduction. Statistical analysis was not applied to the measurements, as it was felt that there was insufficient data. Although trunk symmetry showed little change according to the measurements, subjectively Margaret’s postural symmetry improved during riding. The videos and photographs show an improvement in postural symmetry

(Fig 9.13). Photography has been used in a number of studies to assess postural alignment (Pope et al 1994). The riding instructor and helpers commented on the improvement of Margaret’s posture, all saying that she ‘looked straighter’. Margaret reported that friends had commented on her improved posture and walking. Other subjective clinical improvements were noted. Margaret observed that walking was faster after riding. This appeared to be so; however, as a timed walk test had not been performed pre-riding, this could not be corroborated. She also reported that it was easier to get into her car (lifting the left leg in) after riding. She said that the left leg ‘felt activated’. Another comment was, ‘I feel looser in the middle,’ referring to improved mobility in the lumbar spine and pelvis region.

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Key points This study demonstrated that riding can make a difference to the physical condition: • Objective improvement in range of hip abduction and subjective clinical improvement in postural symmetry, walking velocity and left leg function was made. • Photographic and video recordings showed improved trunk symmetry, however the objective measurement of trunk symmetry did not. • The limitations of the study highlight the need for further investigation, using a more reliable postural assessment scale, a longer period of riding and a larger and controlled sample of subjects with similar neurological status (Pauw 2000).

Recreational riding The Riding for the Disabled Association provides people with disabilities the opportunity to ride or carriage drive to benefit their health and wellbeing. As stated in the introduction, 25 000 people with a disability ride or carriage drive with the RDA each week (Fig. 9.14). The majority of those participating in recreational riding have a physical disability due to a neurological condition such as cerebral palsy (the most common condition seen in RDA) and/or a learning disability. Other conditions more recently referred are people with heart conditions, asthma and cystic fibrosis, who may have problems with poor exercise tolerance, and people with behavioural and psychological problems. Riders are referred to the RDA by their consultant, therapist, teacher, GP or social worker. Riders may also self-refer. New riders need to complete an enrolment form signed by themselves, or by their parent or guardian if under 18, giving consent, and by their doctor or therapist giving relevant medical information. RDA groups have qualified instructors working alongside approximately 14 000 trained, volunteer helpers. Some groups have their own therapist attached, however, as there are only approximately 140 therapists who are members of ACPTR in the UK, they are spread quite thinly on

Figure 9.14 RDA group ride enjoying the countryside. (With kind permission of the Riding for the Disabled Association (RDA).)

the ground. If an RDA Group does not have its own therapist, advice can be sought from the county therapist. Horses may be owned by a group, lent by private owners or hired from approved riding schools. Riding sessions may take place outdoors or in a covered riding school. There are several purposebuilt centres thoughout the country where the facilities, land and horses are owned by the RDA group. Before riding, the rider’s suitability is assessed by checking the enrolment form and diagnosis, and assessing the rider’s mobility and sitting balance. Other factors taken into consideration are the weight and height of the rider. Up to 10–15% needs to be added to the weight of a rider with a severe disability, who has poor postural control, as it is more difficult for a horse to carry this type of rider. The assessment will indicate:

• Whether the disabled person is suitable for this level of riding, i.e. is able to sit comfortably astride a horse and maintain independent sitting balance. A person with a more severe disability and poor head control, should be referred to a therapist for either therapeutic riding or hippotherapy. • The method of mounting and dismounting, i.e. from a mounting block, ramp or hoist. • The number of helpers needed, ranging from none to a leader (horse) and two sidewalkers. • The size and type of pony/horse required, for example, a larger pony or small horse usually has a smoother, longer striding gait than a small pony, which may have a choppy, shorter striding gait.


The former horse will better suit a rider with poor postural control, even though the smaller pony may be more convenient for the sidewalkers to assist the rider. The weight of the rider will dictate the size of horse used – all horses have maximum weight limits that they can safely carry (see contraindications). • The aims of riding and goals can be set. Tuition is tailored to the individual needs and capabilities of the rider. Riders may vary from those who will never be able to ride independently, to those who take part in international competition in dressage, driving and equitation. Most riding sessions take the form of group lessons lasting from half an hour to 1 hour, depending on the capabilities of the riders. If possible, riders of similar ages and abilities are grouped together. Riders usually attend once a week. Balance and confidence are improved by the use of mounted exercises and games at halt, walk and trot (Fig. 9.15). Riding, that is horse control, is taught if possible. The correct riding position should be ensured, that is central, upright and symmetrical. The use of the voice for walk/halt/trot transitions is encouraged, as is the use of the legs to give the aids (instructions) to the horse and the use of the reins for changes of direction and walk/halt transitions. As well as learning to ride, stable management and horse knowledge is taught, including feeding,

Figure 9.15 Mounted games. (With kind permission of the Riding for the Disabled Association (RDA).)

Figure 9.16 Carriage driving. (With kind permission of the Riding for the Disabled Association (RDA).)

grooming, colours and points (parts) of the horse. Proficiency tests in riding and stable management give the rider incentive and a measure of their achievement. The aim of recreational riding is to give confidence to the rider, help him or her to ride as independently as possible and achieve attainable goals, ranging from passing a Grade One Proficiency test to competing in the Paralympic Games, at the same time benefiting his health and wellbeing, and helping to maintain his physical condition.

Carriage driving Carriage driving is a useful way of maintaining an exciting and enjoyable activity with horses, when the disabled person’s physical condition has deteriorated, to the point where mounting, dismounting and maintaining sitting balance astride a horse is difficult. The person with a disability may sit in their wheelchair in the carriage, or on the bench seat alongside an able-bodied person (whip), who is usually the owner and driver of the horse. The whip gives instruction and guidance and can take over the driving if necessary (Fig. 9.16). The movement of the carriage, which is often over bumpy tracks and across fields, challenges and stimulates postural and balance reactions, as does the use of the reins to control the direction and pace at walk and trot (canter is not allowed). In competition, the driver may have to negotiate a course of cones set out in a slalom or a series of gates, against the clock.

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Carriage driving is a recreational sport, which is physically and mentally challenging and can lead to competition at local, national and international level.

ECONOMICS OF RIDING Currently people with disabilities in the UK who participate in hippotherapy, therapeutic riding and recreational riding are partly funded by charity, that is, the Riding for the Disabled Association Groups, (who subsidize riding for people with disabilities and provide the volunteer helpers) and partly by themselves, not by the National Health Service (NHS). There is an equivalent system to the RDA in the United States of America (USA) and Australia, although in the USA hippotherapy is usually funded by healthcare insurance. In Scandinavia, Germany and Austria, hippotherapy and therapeutic riding are prescribed by doctors and funded by the state and/or healthcare insurance. Physiotherapists who are involved with this type of work in the UK fall into two main categories – those who attend riding sessions as part of their paid NHS work, for example, paediatric physiotherapists with special school groups, and those who do this type of work as volunteers. Some hippotherapists (physiotherapists who have passed all three parts of the ‘Horse in Rehabilitation’ course) do this work privately. There are only two therapeutic riding centres in the UK that fund a physiotherapy post. In Debuse’s (2005) study exploring hippotherapy in Germany and the UK, it was found that there were approximately 2000 physiotherapists in Germany holding a recognized hippotherapy qualification, compared to only 15 in the United Kingdom (in 2003). Of those 15, only 57.1% were paid, in contrast to the German hippotherapists who were all paid. This has implications for the future of hippotherapy and therapeutic riding in the UK. If funding was available, it is probable that more physiotherapists would pursue this clinical speciality. Purpose built therapeutic riding centres may be the best solution, as used in Scandinavia and other European countries, where therapists work on a fulltime basis funded by the state. The Chartered Society of Physiotherapy has said that it supports the need for NHS money to follow patients referred for therapeutic riding. In the document, ‘Working differently – The role of Allied Health Professionals (AHPs) in the

treatment and management of long-term conditions’ (DoH 2005), it states that AHPs are ideally placed to contribute significantly in reforms to the treatment and management of long-term conditions, in particular to support patients to manage their own conditions and provide continuity of care between services for children and adults. This is especially relevant for hippotherapy, therapeutic and recreational riding. Many disabled individuals receive little treatment from the NHS. Riding may be the only treatment that is available, providing physical management and support to people with long-term conditions, and in particular providing continuity of therapy between services for children and adults.

USEFUL ADDRESSES/ORGANIZATIONS Association of Chartered Physiotherapists in Therapeutic Riding (ACPTR) Secretary: Miss Geraldine Walker FCSP The Orchard Broadlands Lower Paice Lane Medstead Hants, GU35 5PX Tel: 01420 562638 e-mail: [email protected] Riding for the Disabled Association incorporating carriage driving (RDA) Tel: 024 7669 6510 e-mail: [email protected] website: www.riding-for-disabled.org.uk The Federation of Riding for the Disabled International (FRDI) Secretariat: P.O. Box 416 Ascot Vale Vic, Australia 3032 Tel: 61 3 9376 5355 Fax: 61 3 9376 5944 e-mail: [email protected] website: www.frdi.net British Sports Association for the Disabled Solecast House 13–27 Brunswick Place London N1 6DX Outdoor Pursuits Calvert Trust Kielder Water Hexham Northumberland NE48 1BS

References

REFERENCES Bertoti DB 1988a Effect of therapeutic riding on posture in children with cerebral palsy. Physical Therapy 68(10): 1505–1512 Bertoti DB 1988b Therapeutic Riding Conferences – positive progress. In: Proceedings of the 6th International Therapeutic Riding Congress, 23–27 August, Toronto, Canada: 400–405 Bowes CE 2005 A single case study to evaluate the effect of horse riding on the postural scoliosis of a 61-year-old woman with multiple sclerosis. Therapeutic Riding Journal 1(1): 1–7 Bustad L, Hines L 1988 Health benefits of animals. American Veterinary Medical Association Annual Convention, p 1–20. American Veterinary Medical Association Publications, Schaumburg, Illinois Campbell E, Jones G 1994 Psychological well-being in wheelchair sports participants and non–participants. Adapted Physical Activity 11: 404–415 Corson S, Corson W, Gwynne D et al 1975 Pet facilitated psychotherapy in a hospital setting. In: Masserman J (ed) Current psychiatric therapies. Grune and Stratton, New York, p 277–286 Debuse D 2005 An exploration of German and British physiotherapists’ views on the effects of hippotherapy and their measurements. Physiotherapy Theory and Practice 21(4) Department of Health 2005 Working differently – opportunities for Allied Health Professionals in the treatment of long-term conditions. www.dh.gov.uk/ longtermnsf Guttman L 1973 Spinal cord injuries – comprehensive management and research Heine B 1997 Hippotherapy: A multisystem approach to the treatment of neuromuscular disorders. Australian Physiotherapy 43(2): 145–149 Hicks CM 2000 Research methods for clinical therapists: Applied project design and analysis, 3rd edn. Churchill Livingstone, Edinburgh Koch S 1994 Therapeutic riding with (secondary neurotic) children suffering from dyslexia. Proceedings of the 8th International Therapeutic Riding Congress, 17–20 January, New Zealand: 188–190

Kunzle U, Egli R S, Yasikoff N 1994 Hippotherapy–K: The healing rhythmical movement of the horse for patients with multiple sclerosis. Proceedings of the 8th International Therapeutic Riding Congress, 17–20 January, New Zealand Kuprian W 1981 Medicine and education. In: Heipertz W (ed) Therapeutic riding medicine, education and sports, 2nd edn. National Printers, Ottowa Inc, p 14–39 Mackay–Lyons M, Conway C, Roberts W 1988 Effects of therapeutic riding on patients with multiple sclerosis: A preliminary trial. Physiotherapy Canada 40(2): 104–109 Mandal AC 1984 The correct height of school furniture. Physiotherapy 70(2): 48–53 Mayberry RP 1978 The mystique of the horse is strong medicine: Riding as a therapeutic recreation. Rehabilitation Literature 39: 192–196 Manual Handling Operations (MHO) Regulations 1992 Manual Handling Operations Regulations. UK Government Statutory Instrument No. 2793. HMSO, London Pauw J 2000 Therapeutic horseback riding studies: Problems experienced by researchers. Physiotherapy 86(10): 523–527 Pope PM, Bowes CE, Booth E 1994 Postural control in sitting. The SAM system: Evaluation of use over three years. Developmental Medicine and Child Neurology 36(3): 241–252 Shephard RJ 1990 Fitness in special populations. Human Kinetics Books, Champaign, Illinois: 22 Shephard RJ 1991 Benefits of sport and physical activity for the disabled: implications for the individual and society. Scandinavian Journal of Rehabilitation Medicine 23: 51–59 Sherrill C 1986 Social and psychological dimensions. In: Sherrill C (ed) Sport and disabled athletes. Human Kinetics Publishers, Champaign, Illinois, p 21–23 Strauss I 1995 Hippotherapy: Neurophysiological therapy on the horse, 2nd edn. Ontario Therapeutic Riding Association Swift S 1985 Centered riding. St. Martin’s Press, New York Wallen M, O’Flaherty SJ, Waugh MC 2004 Upper limb outcomes of botulinum toxin in cerebral palsy. Archives of Physical Medicine and Rehabilitation (85)2: 192–200

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Section 2 Hydrotherapy Barbara Cook

Much of the author’s enthusiasm for hydrotherapy was formulated at a residential home for adults with complex disability, which included people with progressive neurological diseases, e.g. multiple sclerosis (MS), acquired neurological damage, e.g. brain injury (BI) and congenital disorder, e.g. cerebral palsy (CP). Most people spent their day in an adapted wheelchair which provided them with enough support to optimize their functional ability. The Halliwick concept of teaching swimming was used by therapists where the emphasis is on ability in the water, rather than disability on land (Martin 1981). Swimming is taught in a logical pattern and small goals are adapted and progressed according to the needs of the individual person, giving them confidence and a sense of achievement. For some people this provided a physical challenge with success that they had not experienced since their trauma. The usefulness and benefits of hydrotherapy can be a very effective adjunct to treatment on land in the management of people with severe conditions and is illustrated by the following case histories. The reasons as to why and how these changes occur are discussed in the text. Complex neurological disability affects the whole person and hydrotherapy may be used as a medium to help to control and prevent the secondary complications that can arise as a consequence of immobility (see Ch. 3). For those who need external postural support it is their only chance of free movement and can be an enjoyable alternative to exercises on land. One of the advantages of using water as therapy is that no matter how severe the physical disability, movement can be experienced in the water.

Case summary 1: Mr A A gentleman with multiple sclerosis presented with very severe and widespread ataxia, making it impossible for him to live independently. He spent most of the day in his wheelchair; his communication was limited due to poor breathing control and slurred speech and his mood was generally low. Despite his refusal of all other therapy, he did agree to come to hydrotherapy. The ataxia was controlled in the water and he was able to move freely and purposefully and with no fear of injuring himself:

• The support enabled him to walk in the water. • He became confident and competent enough to float and swim independently.

• The water activities offered him risk and challenge which boosted his self-esteem.

• His speech was much clearer when in water and gave •

him the opportunity to converse and enjoy the social interaction. He looked forward to coming and the hydrotherapy experience gave him the motivation and confidence to participate in other activities.

Case summary 2: Mrs A A woman with multiple sclerosis presented with ataxia in the upper trunk and arms, and severe spasticity in the lower limbs. The stiffness in her hips inhibited her ability to lean forwards, making it difficult to achieve a stable and functional position in the wheelchair or to initiate a sit to stand transfer. Due to severe flexion in one knee, she had surgery to release the contracture. A long-term goal was to enable her to transfer with the assistance of one person which would help to maintain her weight bearing and control the spasticity in her lower limbs.

The Physiological Effects of Immersion

She was at risk of pressure ulcers, especially around the pelvis.

• • • •

•

The support of the water enabled her to practise sit to stand at the rail and the blowing facilitated her ability to bring her weight forwards over her feet. Walking in the sitting position assisted flexion at the hips, the weight bearing helped to inhibit the spasticity in the lower limbs and restore muscle balance. She was able to swim independently which gave her a sense of freedom and control. The warm water assisted in maintaining intact skin by increasing the blood supply to the small vessels of the skin thus stimulating blood supply to areas that are otherwise under constant pressure from the supporting surface in bed and wheelchairs. She enjoyed her hydrotherapy session and especially the social interaction.

Case summary 3: Mr C This gentleman was severely disabled as a result of cerebral anoxia during an asthmatic attack. He was able to transfer with one person assisting but moved ‘in one piece’ with no rotation or selective movement and was frightened of falling. His left shoulder was very painful with limited range of movement; the spasticity in both hands curtailed all functional activities and further reduced active movement. He had no cognitive impairment and was an articulate man, but his speech was very quiet and slow, making it difficult to interpret; words often had to be spelt out. He drove a power chair and was computer literate.

• The warmth of the water aided relaxation and reduced • •

THE PHYSIOLOGICAL EFFECTS OF IMMERSION

•

Immersion in water modifies a great number of internal bodily functions, the degree of influence depending upon the depth, the density, the temperature and the chemical components of the water. Evidence suggests immersion produces profound physiological effects on the:

• •

• cardiovascular • haemodynamic • renal • respiratory systems (Hall et al 1990). It is important that hydrotherapists be aware of these effects when treating people in water, in order to avoid unconsidered risks (HACP 1992). Pascal’s law states that fluid pressure is exerted equally at any level in a horizontal direction; that is, pressure is equal at a constant depth. However, pressure increases with depth and with the density of the fluid. The pressure in a given fluid at rest is the same everywhere. This pressure gradient causes a redistribution of blood from the lower extremities to the thorax (Choukroun et al 1989, Greenleaf 1984). A person standing in the hydrotherapy pool will have greater pressure on the feet, and this pressure will

•

pain. The support of the water enabled the hydrotherapist to facilitate trunk activity and freed the limbs for active and selective movement. The support of the water assisted in reducing the effect of gravity and released muscles for functional activity to take place. The fear of falling was removed because the slow falling in water gave him time to adjust and restore balance and control. He was able to walk in the water. The improved quality of speech aided communication which was further assisted by good eye contact and improved facial expression. Hydrotherapy offered this person a physical activity in which he could actively participate and make progress as opposed to his static and repetitive land-based programme.

diminish progressively towards the water surface – the effect is immediate and is greater in standing as opposed to the horizontal float position.

Cardiovascular effects Research has described the physiological effects of an upright seated man, immersed in tap water at a temperature of 34–35.5°C, to the sternal notch (Hall et al 1990). Water 34–35.5°C has been termed thermo–neutral, as it has no effect on core temperature but skin temperature is approximately 33°C; it feels warm and pleasant to the skin. During immersion with head out of water, approximately 700 mL of blood normally pooled in the lower

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limbs is redistributed and causes an increase in blood to the heart. This causes an increase in blood returned to the heart, hypervolaemia, which appears to be the basis for all the physiological changes associated with immersion. This increased venous return to the right atrium increases the cardiac output by 34% and the heart increases in size by 30% (Weston et al 1987). As a result, people with uncontrolled heart failure or resting angina are not suitable for hydrotherapy and heart conditions in general must be treated with caution. Water temperature above 35.5°C increases the core temperature, decreases blood pressure and as the temperature rises there is a progressive increase in cardiac output. Water temperature is critical for both able and disabled persons; water temperature around 36–37°C is initially pleasant but because of the above effects, induces tiredness which inhibits physical activity (Craig & Dvorak 1966). A person with systemic illness or pyrexia is not suitable for hydrotherapy and it is recommended that the temperature be normal for 24 hours before immersion (Hydrotherapy Association of Chartered Physiotherapists 1992). Immersion up to the diaphragm only or in a supine posture will diminish the cardiovascular effect associated with immersion (Hall et al 1990). This fact is important when deciding on the depth of water and what positions to use in the water. The pressure gradient is useful in reducing any swelling that may occur in an injured lower limb. It aids anti–gravity flow of blood and lymph to reduce oedema of the feet and ankles (Skinner & Thompson 1994).

Haematological effects Some studies have demonstrated that the pressure of water immersion causes haemodilution, a relative dilution of red cell factors and albumin concentration, which is probably the result of a shift of extracellular fluid into the vascular spaces. This has been shown to occur within the first 30 minutes of immersion where the plasma has increased by 120 mL, but returns to normal over 2 hours. This may be beneficial in conditions where the blood viscosity is higher, for example rheumatoid arthritis (Hall et al 1990).

Renal effects During immersion the rate of urine produced increases from 1 mL of urine per minute to approximately 6.2–7.6 mL of urine per minute, leading to significant increase in diuresis with an increase in the excretion of salt potassium and calcium (Epstein et al 1974). This may be critical for a person with uncontrolled diabetes or urinal tract infection; the increased excretion of urine and loss of salt could potentially put them at risk. Drinking water should be available for people before and after the session to reduce the effects of dehydration. Hydrotherapists should have water at the poolside because of their prolonged time in the water.

Respiratory effects There is a conflict of view as to whether immersion is indicated or contraindicated for individuals with small lung volumes. Harrison (1981) argues that to state an actual volume discriminates against individuals who naturally have a small vital capacity, for example people with ankylosing spondylitis, but can cope with being immersed in warm water. Scientific research has shown that during immersion the total lung capacity is decreased because of the hydrostatic pressure which causes compression of the ribcage and the abdomen, and the intercostal muscles have to work against resistance (Greenleaf 1984). These effects will vary with different body positions because the inspiratory muscle action decreases with increased depth of immersion (Banzett et al 1985). On the other hand, some clinical studies have demonstrated an increase in respiratory function during immersion, e.g. Sayliss (1995) assessed 9 adults with tetraplegia and Hutzler et al (1998) assessed 23 children with CP and measured an increase in forced vital capacity. Reasons for this unexpected outcome could be because the pressure of the water can support and therefore assist expiration which, together with blowing, helps to stimulate the activity of the intercostal muscles and thus increase inspiration (Reid Campion 1985); the warm water reduces muscle tension/ stiffness and assists respiratory muscles to work against the hydrostatic force (Choukroun 1990). Anstey & Roskell (2000) reviewed a number of studies and concluded that although the scientific research provided statistical evidence to support

Properties of Water

their claims, the literature only related to healthy adults. In spite of clinical studies with disabled people claiming positive results, they do not provide sufficient statistical evidence to support their claims. Therefore further research needs to be done. People with reduced mobility and low exercise tolerance may be sensitive to the physiological changes that take place and over–exert the body. Hydrotherapists must take appropriate and informed precautions on behalf of each person before they are accepted for hydrotherapy. Hydrotherapy guidance for good practice is set out in a booklet by the HACP (1992).

PROPERTIES OF WATER Density Pure water has a relative density of one and any impurity added to the water will increase the density therefore hydrotherapy pools are denser than pure water; seawater is slightly denser than hydrotherapy pools and the Dead Sea even denser; the higher the density, the more upthrust and the same body will float higher (Low 1996). The relative density of the human body varies with the build (notably the proportion of fat) and with the amount of air in the lungs but it is slightly less than that of pure water, a relative density of approximately 0.98, which means that the human body will float with only some 2% of it above water. The relative density of the human body also varies with age:

• The infant or young child has a relative density of approximately 0.86 and so flotation is assured.

• In adolescence and early adulthood the relative

density of the body is approximately 0.97 and flotation will be more difficult. • In later years with the increase of adipose tissue the relative density of the body tends to return towards 0.86 and so it becomes easier to float again (Reid Campion 1985). Some body parts, such as the arms, are less dense and float easily, while other parts such as the legs are denser and tend to sink. This is significant when undertaking activity in the water, especially for a person with abnormal tone and asymmetry and altered density, e.g. most non–ambulant people will have legs of low density due to reduced musculature and will have difficulty controlling the vertical

position with their feet on the bottom as the legs will tend to float.

Buoyancy The force exerted by a fluid on an object is equal to the weight of the fluid displaced by the object. When a body is wholly or partially immersed in a fluid at rest it experiences an apparent loss of weight equal to the weight of the fluid displaced. Archimedes’ Principle A body immersed in water is subjected to two opposing forces – the downward pull of gravity and the upward thrust of buoyancy (Low & Reed 1996). If these two forces are equal and are directionally opposite to each other, then the body will float and no rotation will occur. When these forces are applied to the human body it can be seen that, when floating, the body is balanced and in equilibrium (Reid–Campion 1985). However, if the forces of gravity and buoyancy are unequal, then rotation occurs until such time as the two forces are once more aligned. If a part of the body is taken above the surface of the water, such as an arm, the forces of gravity and buoyancy are no longer equal and directionally opposite and the body will rotate until the two forces are aligned once more. Due to disability a person may have muscle imbalance, altered tone, asymmetry or loss of limb and the floating body will rotate until the forces of gravity and buoyancy are aligned (Association of Swimming Therapy 1992). To keep the airways clear of the water the person is taught how to control the rotational forces that occur. People who have acquired disability and who were previously confident swimmers, sometimes find this rotational force very frustrating and confusing but with encouragement and practice manage to enjoy the new challenge and make good progress. Experienced hydrotherapists may predict how a person will float but not always accurately. Influencing factors, such as water confidence, will affect the ability of a person to float.

Liquid flow Laminar flow occurs at low speeds and the movement in the water creates little disturbance.

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Turbulent flow occurs at higher speeds and movement in the water creates waves, i.e. like the wake of a boat. A body will follow in the wake of a moving object through water. This is a very useful method of facilitating independent swimming with the hydrotherapist moving slowly backwards through the water creating turbulence and the person floating in supine being drawn along in the wake (AST 1992). Turbulence can be created to stimulate activity in weak muscles, balance reactions or to improve posture (J Pattman, unpublished work, 2004). Activity can be made more difficult by changing from streamlined to un–streamlined movement and turbulence may be used both to assist and resist movement (Low & Reed 1996). Hydrostatic drag is the resistance to movement through water. It can be used to give both resisted and assisted exercise as well as assistance to passive stretching of soft tissues. Along with the turbulent effect, it dampens down involuntary movements, e.g. athetosis, ataxia, ballismus. If balance is lost, the falling movement is retarded and time is allowed for the person to exert voluntary control to regain the original position which is of particular benefit to these people, e.g. case summary 3.

Warm water Warmth is comforting and, with the movement of the water on the skin, can invigorate and increase spatial awareness of parts of the body that have reduced sensation and proprioception, e.g. the distal parts. It can relieve pain and muscle spasm. Water is infinitely conforming and when a person is in equilibrium, e.g. floating, the buoyancy of the water can create an impression of weightlessness and facilitates relaxation in mind and body. It has been suggested that it gives a feeling of security and wellbeing because of the prenatal link with amniotic fluid.

physiotherapist specifically for an individual to improve function, carried out by appropriately trained personnel, ideally in a purpose built, and suitably heated hydrotherapy pool. HACP 2003 Hydrotherapy is a combination of the effect of immersion, technique and exercise. J Pattman, unpublished work, 2004 The Bad Ragaz Ring Method uses flotation rings to stabilize different parts of the body and to select movement. The exercises are quite specific and are based on proprioceptive neuromuscular facilitatory patterns of movement. Balance reactions and muscle activity can be challenged by altering the density, e.g. lifting a limb out of water and resisting the rotational force (Boyle 1981). This method is particularly useful where the aims of treatment are for the strengthening of the trunk and lower limbs and also used in neurological conditions such as peripheral nerve lesions, paraplegia and tetraplegia. The Halliwick Concept is the preferred method in this author’s opinion for this specific group of people. The Halliwick concept has been advocated for people with neurological impairment and provides the basic principles of activity in water whilst engaging the whole person. The philosophy of the method is that people are ‘water happy’ and it has been found to be safe for people of all ages and many types of impairment, as well as the able–bodied (Martin 1981). People are taught on a one–to–one ratio of ‘instructor to swimmer’ with gradual withdrawal of help as they are able to cope, or until complete independence is achieved. The person is taught how to:

• Maintain a safe breathing position. • Regain such a position if lost. • Control exhalation whenever the face is near the water.

Balance HYDROTHERAPY METHODS Hydrotherapy has been defined as: A therapy programme utilising the properties of water, designed by a suitably qualified

Balance in water is the ability to maintain a safe breathing position and to control the body in water (AST 1992). To do this, three essential skills are needed: breath control, head control and rotational control.

Hydrotheraphy Methods

1. Breath control This is essential for all activity in the water as without breath control the swimmer is not safe. Controlled blowing towards the water assists in head control and in turn can facilitate the control of balance in the water. Voice production and speech intonation is improved, perhaps because of the humidity within the pool environment and the relaxation induced by the warmth of the water may assist with respiration. Lip closure is improved by the action of blowing, which together with relaxation of the neck and facial muscles can have a carry–over effect with eating and swallowing. It is appropriate for speech and language therapists to work with hydrotherapists in this medium for those who respond well in water.

2. Head control The head controls the position of the body in water; where the head goes, the body follows. For some people the head is the only means of control. Activities such as ‘look at me’ (Pattman, unpublished work, 2004) are simple and encourage the swimmer to participate and actively move the head, perhaps just moving the eyes. Head control plays an important part in receiving proprioceptive information that is vital for the organization of posture, balance and movement. These activities initiate and stimulate active movement, i.e. eye–hand coordination, awareness of body image and orientation in space.

3. Rotational control Rotations are essential for the swimmer to obtain a safe breathing position and maintain control in the water. There are four rotations: Transverse rotation is changing from lying supine to standing or sitting and in reverse this action is facilitated by the head but always with the chin tucked in. Clinical experience has shown that vertical balance practice in water has carry–over effects with people who have lost the ability to bring their weight forwards over their feet, in preparation for standing. Saggital rotation is side stepping when in the upright position. This movement is important in learning to maintain a stable position when standing in water, particularly in deep turbulent water. Practice at walking sideways,

facing the hydrotherapist in a short arm hold and if possible progressing to long arm hold, gives experience of this rotational control. Longitudinal rotation is rotation around the spine, like rolling a log in water, and may take place in an upright or horizontal position; it can be progressed to a complete roll. The activities in both lying and standing are facilitated by movement of the head, arms and legs. ‘Don’t let me roll you’ is an activity (AST 1992) which facilitates active movement of the head and unilateral muscle contraction; this activity can be utilized to manage specific disability, e.g. a person with hemiplegia and one-sided neglect. Combined rotation is the ability to control any combination of rotations executed in one movement, e.g. from standing; reach forwards, blow and lie prone; turn the head and roll into supine with the airway free; reach forwards, blow, bend the hips and knees, and when in the vertical position, put the feet down and stand. The objective is to execute this very smoothly and silently, creating minimal turbulence; which demonstrates control and balance. Everyday functional activity incorporates rotational movement in all planes and people who spend the majority of time in a wheelchair have reduced trunk rotation and tend to function in one plane of movement. Rotational activity between the pelvis and the shoulder girdle or vice versa plays an important role in the dissociation of the total patterns of flexion and extension (Bobath 1990); it has a modulatory effect on postural tone and therefore assists in restoring muscle balance. Balance control is acquired through learning to cope with body shape and the rotational effects that occur as a consequence of asymmetry, e.g. in hemiplegia, and also appreciating the effect of turbulence on stability and control. Activities can be performed in sitting, lying and standing with support, through to complete independence where further progression can be made.

Walking Many people are unable to walk on land, but manage to take steps in the pool. In some cases this helps to re-educate walking, assists in maintaining

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and increasing range of movement and can be a tremendous boost to morale. The water is supportive and assists in reducing the effect of gravity thus assisting postural control, and releases muscles for functional activity to take place. The movement, the turbulence and drag of the water can re–introduce awareness of the limbs to the person and the slow falling gives time to adjust and restore balance and control. The general slowing down encountered in the water gives the body time to react and appreciate how to use the body.

Weight bearing Immersion in the water effectively reduces weight transmitted through lower limbs (Harrison & Bulstrode 1987) but knowledge of the forces involved during hydrotherapy is still very limited (Clemence 2005). People with painful joints usually find relief when weight bearing in water but unhealed leg fractures, or limbs that have not had any weight for some considerable time, should be treated with caution.

Support The handling of the disabled person in water is instrumental in creating an environment which is therapeutic, beneficial and enjoyable for the swimmer. Hydrotherapists must be sensitive to people’s reactions in the water and give only as much support as is required, progressing the activities to meet the needs of each person (AST 1992, Martin 1981). The support of the water assists hydrotherapists to facilitate balance and select movement, whereas on land, equipment or other assistants would be required. The Halliwick concept does not recommend floats, one reason being that floats will hold a body up in the water but do not necessarily prevent rotation or keep the face out of water. Floats can therefore give a false sense of security and should be used discerningly. On the other hand, this author has found that some adults, particularly with acquired disability, find floats helpful. Altering the buoyancy by attaching floats diminishes the density of the swimmer so that a greater proportion of the body is out of the water, making it easier to maintain the airways clear of the water.

Benefits of floats are as follows:

• They

can enable people to experience independence and participate in activities away from the poolside and join in group sessions. • Many adults do not like putting their ears in water or getting their hair wet and the neck floats will protect ears and keep hair dry. • People are able to experience total relaxation with no pressure or anxiety. • Floats can be used to assist hydrotherapists to select movement, and to assist or resist movement. • Economical reasons – enabling hydrotherapists to see more than one person in a single session.

Case history 4

Relevant information Mr D had a dense stroke 2 years ago which resulted in left-sided weakness. He is an active and alert elderly gentleman and his general health was compromised by his poor respiratory status and he continuously suffered with chest infections which prolonged his stay in hospital. He returned home to live with his wife with the support of the community neuro-rehabilitation team and some regular care. He attended a ‘stroke group’ one afternoon each week as follow-up support after leaving hospital. After a short time at home, he had a fall and fractured his neck of femur — the affected side — and returned for a further stay in hospital. He recovered well and returned home with similar support to that described above. He had expressed an interest in hydrotherapy. He resumed his art classes and has many interests as well as family and friends. His walking ability is good considering the poor sensation and reduced muscle activity in his left leg. He uses a stick and is able to move independently within his home but outside his home needs someone to accompany him and only walks very short distances. He now has a ‘buggy’ and can travel short distances independently but in addition requires the assistance of a competent person if he needs to disembark.

Problems

• Left-sided neglect. • The left arm has

very little functional/selective movement, reduced sensation, poor proprioception,


• • • • •

and little muscle support around the shoulder joint, therefore at risk of injury. The left forearm, wrist and fingers are flexed at rest (exaggerated with physical effort), therefore at risk of contracture. The left leg has poor selective movement, reduced sensation, poor proprioception, reduced stability around the hip joint and no active selective dorsiflexion in the ankle. Walking posture favours the right side, the left foot has no heel strike, the knee hyperextends and the hip circumducts. He has difficulty placing the left foot. Poor balance reactions and is reluctant to take weight over to left side. Sitting posture is asymmetrical and leans towards the right side.

In spite of his active and good-quality lifestyle it was observed that since returning home from hospital his right side was stronger and the left side was weaker. Experience suggests that without some counterbalance to this posture, it will become more exaggerated and will eventually lead to reduced ability and mobility. It was suggested that hydrotherapy could be a suitable means of maintaining and improving the quality of mobility and function for a person with long-term neurodisability.

Aims

• Improve symmetry and postural alignment • Extend mobility and exercise tolerance • Maintain or increase the range of movement in joints and

pool and has a problem taking weight over the left side. It was decided to attempt the steps on the next session. Initially the hydrotherapist gave maximum assistance as the steps are very slippery, as is the bottom of the pool.

Sixth session Entered and exited via the shallow end steps using the right hand rail and with minimal assistance of the hydrotherapist. This proved to be a useful exercise in that good placement and weight bearing over the left foot with control of the left knee prevented slipping; the technique and confidence noticeably improved each week.

Sitting activities (Figs. 9.17, 9.18) First session

From entry he was supported in a sitting position by the hydrotherapist, and taken to a suitable depth of water. It took time to gain symmetry in sitting, facing the poolside rail with shoulders immersed and both hands holding the rail (the left hand was placed with assistance). Initially the left leg took little weight; the knee was extending, the hip was abducting and laterally rotating and the heel was not in contact with the floor and it had severe clonus. Activities practising head control, breath control and rotational control (Fig. 9.17) facilitated symmetry of posture (Fig. 9.18). Once achieved, he practised sitting to standing and maintained equal weight over the feet, kept the left heel down and maintained body symmetry.

Sixth session From entry he was able to walk in a sitting position facing the hydrotherapist with long arm support (hand to hand) and he was able to put weight through and control the left leg. This enabled him to walk to the rails

soft tissues

• Prevent contractures • Increase postural awareness and carry this over to selfmanagement on land

• Opportunity to learn new skills, offering challenge and freedom.

Action He attended hydrotherapy once each week for 6 weeks and the session was approximately 30 minutes long. This study describes his first and last session.

Entry and exit First session

Entered and exited using the chair hoist which involves an awkward stand transfer very close to the edge of the pool. The entry transfer was particularly difficult as he had to lead with the left side towards the edge of the

Figure 9.17 Blowing and trunk rotation. (Reproduced with permission.)

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Figure 9.19 Asymmetrical standing posture. (Reproduced with permission.)

Figure 9.18 Symmetrical sitting posture. (Reproduced with permission.) using a long arm hold (hand to hand) with the hydrotherapist (Fig. 9.22). He needed assistance to place the left hand on the rail but achieved symmetry in sitting almost immediately. Once in position at the rail he was able to practise these activities independently.

Standing First session

Standing at the deep end of the pool (holding the rail) was a useful activity (Fig. 9.19). The support of the water helped him to identify the adaptive posture and demonstrated the difficulty in controlling the left leg in this upright posture.

Sixth session

He was able to stand at the rail in the deep end with weight over the left foot, control the left knee and correct the standing posture (Fig. 9.20). The support of the water enabled him to practise weight transference without fear of falling and enabled him to practise posture correction independently.

Walking First session Walking across the pool in sitting position with the hydrotherapist behind him supporting the pelvis to

Figure 9.20 Working towards symmetrical standing posture. (Reproduced with permission.)

maintain the position and give security (Fig. 9.21). It was difficult to control left leg hip flexion without knee extension but it was possible sometimes and heel strike was encouraged.

Sixth session

As already described he walked in the chair position but with a long arm hold (hand to hand) with the hydrotherapist in front but walking backwards (Fig. 9.22); the long arm hold and blowing assisted in keeping the weight


Figure 9.21 Walking with pelvic support. (Reproduced with permission.)

Figure 9.23 permission.)

Back float ‘Look at me’. (Reproduced with

achieved it was possible to move on to more active movement such as gentle leg kicking at the level of the weaker leg. The left arm was facilitated to move away from the trunk assisted by the hydrotherapist and the natural drag of the water. Techniques such as ‘seaweeding’ and ‘look at me’ (Pattman, unpublished work, 2004) assisted in mobilizing the trunk and introduced rotations (Fig. 9.23).

Sixth session Figure 9.22 Walking with long arm hold. (Reproduced with permission.)

forward over the feet, maintaining balance and control. The forward movement was assisted by the wake formed by the hydrotherapist. It was possible to walk in a more upright position with good control and selective movement, but not in a fully upright position.

Lying supine First session Neck and hip supports were used and the hydrotherapist stood behind, giving support with flat hands at the centre of buoyancy or strategically placed to achieve specific movement. The hydrotherapist walked backwards in a figure of eight, which gave equal sensation to both sides of the body and induced relaxation. Once relaxation was

Activities in a back float position, with no floats, progressed to changing from supine to standing at the rail using the combined rotation (Figs 9.24-9.26). He achieved independent floating and swimming with rudimentary strokes, e.g. kicking with legs and sculling with hands and was encouraged to keep activity to the level of the weaker side. Supervision was needed at all times for these activities but they were progressing each week. Activities in supine with floats enabled the hydrotherapist to encourage active muscle activity using isometric and stabilizing techniques. The left arm achieved a greater range of movement in the water than with treatment on land. The floats also enabled him to float independently and he learned how to manoeuvre himself around the pool and this gave him a great sense of freedom and independence (Fig. 9.27). The active movement and new experience was very tiring on his first session but by the end of the course his exercise tolerance was considerably increased. Every aspect of activity in the water progressed and could be developed further with the opportunity to continue the sessions.

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• He walks more confidently without the stick. • He picks things up from the floor, e.g. his stick. • He walks independently to the bottom of the garden with a stick.

• He has increased postural awareness and participates in self-management.

• Both his wife and the person who assists in his care Figure 9.24 Back float with minimal support. (Reproduced with permission.)

•

commented on his general physical improvement, especially his balance and independence. It took his mind off his disability and he actively participated in learning new skills.

For this gentleman hydrotherapy was a new experience and is an enjoyable way of managing his disability. It made a positive contribution to preventing the consequences of asymmetry and muscle imbalance. It was difficult to imagine achieving so much in a treatment session on land without considerably more effort and less reward, for both Mr D and the hydrotherapist.

Figure 9.25 Combined rotation to side of pool. (Reproduced with permission.)

Figure 9.26

Happy landing. (Reproduced with permission.)

Outcome

• The physiotherapist managing the stroke group reported an improvement in the quality of his walking.

Figure 9.27 permission.)

Independent with floats. (Reproduced with

Conclusion

PUBLISHED EVIDENCE In general therapists who are skilled in the use of hydrotherapy as a therapeutic tool are convinced of the benefits to people who enjoy this medium, but there is little robust evidence or scientific research to prove the benefits of hydrotherapy. It is said that land and water are two totally different mediums and therefore it is not possible to re-educate or promote carry-over from water to land; this is difficult to dispute without some evidence, as distinct from the anecdotal literature or the hydrotherapists’ enthusiasm. The following studies are examples of attempts to measure both quantitatively and qualitatively the therapeutic benefits of treatment in water as opposed to land–based exercise for people with neurological problems. Mackinnon (1996) evaluated the benefits of Halliwick swimming on an 8-year-old boy with mild spastic diplegia, and demonstrated that over a period of 9 months there was a measurable improvement in his swimming ability as well as in his physical ability. Other subjective improvements were also identified and provided the child with skills directed towards independence in adult life, and most importantly, the ability to be responsible for his own fitness. A team from Canada (Chu et al 2004) evaluated the effect of a water-based exercise programme to increase cardiovascular fitness for 6 adults with stroke. The results showed significant improvements in cardiovascular fitness and functional mobility. The results were promising but illustrated the difficulty in providing matched activities. Another study (Woolley 2003) looked at the effect of immersion in a hydrotherapy pool on athetoid movement in two boys, aged 9 and 15 years, with cerebral palsy. The study was designed to measure the efficiency of a reaching activity after hydrotherapy. The data did not reveal any significant difference in performance of the reach grasp task. The results were inconclusive, but this study demonstrates the difficulty in matching age, physical ability and possible precise pathology and consequently comparing their data. In a systematic literature search to appraise the quality of and collate the research evidence supporting clinical effectiveness of hydrotherapy (Geytenbeek 2002), it was found that most of the

clinical trials conducted were more often in populations with rheumatic conditions, chronic low back pain and older adults. Neurological populations are under-investigated, and most particularly there is a dearth of studies for people with complex disability. The most rigorous trials looked only at prescribed exercises in water and other questions such as the cost benefit, exercise selection, technique, frequency and duration of treatment, carry-over effect, and level of supervision have not been investigated. The study concluded that the body of evidence supporting the effectiveness of hydrotherapy is incomplete and advocate more randomized controlled trials with larger samples to support assurance of the effectiveness of hydrotherapy. In the above study it was only the randomized control trials that were awarded high quality scores. However, there is an argument to suggest that group design provides information that is of uncertain usefulness in matching treatments to individual clients. Ottenbacher (1986) makes a case for single case studies and suggests that group-comparison designs are not appropriate or practical for use in many clinical situations as the group comparison method looks at the average performance across all groups of clients and does not represent any one individual in the group. He advocates that single system designs are better suited to monitor practice and evaluate individual client change related to treatment in clinical settings. Bateman (1999) supports this view and adds that people with complex disability or neurological damage have symptoms that vary hugely between individuals. More evidence is needed to support the benefits of hydrotherapy.

CONCLUSION This section has discussed the many benefits of hydrotherapy to people with severe and complex disability. Although hydrotherapy pools exist and are popular fundraising projects, they are not easily accessible to all. Non-disabled people are able to choose the form of exercise they prefer, so why should the disabled person not enjoy the same choice? The National Service Framework (NSF) for long–term conditions was developed in order to

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raise standards of treatment, care and support across health and social care services. The main theme that runs throughout the NSF centres on promoting independence, choice and putting the individual at the heart of care. The value of hydrotherapy in the contribution it can make towards achieving the quality of care for this group of people must not be overlooked.

Halliwick AST c/o ADKC Centre Whitstable House Silchester Road London W10 6SB website: www.halliwick.org.uk Frontline The Chartered Society of Physiotherapy 14 Bedford Row London WC1R 4ED e–mail: [email protected]

USEFUL ADDRESSES/ORGANIZATIONS Hydrotherapy Association of Chartered Physiotherapists (HACP) Secretary: Anna Carter Physiotherapy Department Eastbourne District General Hospital Kings Drive Eastbourne East Sussex BN21 2UD Tel: 01323 417400 ext 4794 e–mail: [email protected]

Department of Health DH Publications Orderline PO Box 777 London SE1 6XH Tel: 08701 555 455 website: www.dh.gov.uk/longtermnsf National Service Framework website: www.dh.gov.uk./PolicyAndGuidance/HealthAnd SocialCare Topics/LongTermConditions/fs/en

REFERENCES Anstey KH, Roskill C 2000 Hydrotherapy: Detrimental or beneficial to the respiratory system. Physiotherapy 86(1): 1–13 Association of Swimming Therapy 1992 Swimming for people with disabilities, 2nd edn. A&C Black, London Banzett RB, Lansing RW, Reid MB 1985 Reflex compensation of voluntary inspiration when immersion changes diaphragm length. Journal of Applied Physiology 59(2): 611–618 Bateman A 1999 Research methodology workshop: Introduction to single-case designs. Journal of the Hydrotherapy Association of Chartered Physiotherapists Aqualines November: 3–13 Bobath B 1990 Adult hemiplegia: evaluation and treatment, 3rd edn. Heinemann Medical Books, Oxford Boyle AM 1981 The Bad Ragaz ring method. Physiotherapy 67(9): 265–268 Choukroun ML, Kays C, Varene P 1989 Effects of water temperature on pulmonary volumes in immersed human subjects. Respiration Physiology 73(3): 255–266 Choukroun ML, Kays C, Varene P 1990 EMG study of respiratory muscles in humans immersed at different water temperatures. Journal of Applied Physiology 68(2): 611–616 Chu K, Eng J, Dawson A et al 2004 Water-based exercise for cardiovascular fitness in people with chronic stroke: a

randomized trial. The American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation 85: 870–874 Clemence ML 2005 We need more research on hydrotherapy’s weight relieving properties. Journal of the Hydrotherapy Association of Chartered Physiotherapists Aqualines 17(1): 18–19 Craig A, Dvorak M 1966 Thermal regulation during water immersion. Journal of Applied Physiology 21: 1577–1585 Epstein M, Millar M, Schneider N 1974 Depth of immersion as a determinant of the natriuresis of water immersion. Proceedings of the Society for Experimental Biology and Medicine 146: 562–566 Geytenbeek J 2002 Evidence for effective hydrotherapy. Physiotherapy 88(9): 514–529 Greenleaf JE 1984 Physiological responses to prolonged bed rest and fluid immersion in humans. Journal of Applied Physiology 57(3): 619–633 Hall J, Bisson D, O’Hare P 1990 The physiology of immersion. Physiotherapy 76(9): 517–521 Harrison RA 1981 Tolerance of pool therapy by ankylosing spondylitis patients with low vital capacities. Physiotherapy 67(10): 296–297 Harrison R, Bulstrode S 1986 Percentage weight bearing during partial immersion in the hydrotherapy pool. Physiotherapy Practice 3: 60–63

Summary

Hutzler et al 1998 Effects of a movement and swimming programme on vital capacity and water orientation skills of children with cerebral palsy. Developmental Medicine and Child Neurology 4: 176–181 Hydrotherapy Association of Chartered Physiotherapists 1992 Standards for good practice. The Chartered Society of Physiotherapy, London Hydrotherapy Association of Chartered Physiotherapists 1998 Guidance for good practice. The Chartered Society of Physiotherapy, London, PA 39 Low J, Reed A 1996 Properties of water related to hydrotherapy: Basic biomachanics explained. Butterworth–Heinemann, Oxford, Ch 7: 123–133 Mackinnon K 1996 Case study: An evaluation of the benefits of Halliwick swimming on a child with mild spastic diplegia. Certificate in paediatric studies, University of Central England Martin J 1981 The Halliwick swimming method. Physiotherapy 67(10): 288–291 Ottenbacher KJ 1986 Evaluating clinical change: strategies

for occupational and physical therapists. Williams & Wilkins, Baltimore Reid Campion M 1985 Hydrotherapy in paediatrics. Heinemann Books, London Sayliss L 1995 The effect of immersion on the respiratory parameters of individuals with a cervical cord injury. (Currently unpublished) Skinner AT, Thompson AM 1983 Duffield’s exercise in water, 3rd edn. Balliére Tindall, London Skinner A, Thompson A 1994 Hydrotherapy. In: Wells P, Frampton V, Bowsher D (eds) Pain management by physiotherapy, 2nd edn. Butterworth–Heinemann, Oxford Weston CFM, O’Hare JP, Evans JM et al 1997 Haemodynamic changes in man during immersion in water at different temperatures. Clinical Science 73:613-616. Woolley S 2003 The effect of hydrotherapy on children with athetoid cerebral palsy. Fourth year project report, Department of Engineering Sciences, University of Oxford

SUMMARY

of treatment between services for children and adults. There are many benefits, physical, psychological and social and for many people with a disability, they may be a more acceptable way of managing their condition than trying to access more formal therapies.

Horse riding and hydrotherapy provide physical management over the long term, giving therapy and support to people with complex disability throughout their lives. In particular they provide continuity

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Chapter

10

The complete physical management regime

INTRODUCTION CHAPTER CONTENTS Introduction ‘What are we trying to do?’ ‘Why are we trying to do it?’ ‘What must be done?’

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A basic management regime 233 Factors influencing effective management 238 The psychology of physical management 241 Summary 243 References 248

Control of posture over a 24-hour period is the core of physical management. It is the foundation upon which all other components are built. Other aspects of management are, however, important. Together with control of posture, these form an integrated regime with the aim of optimizing the physical wellbeing of the person with severe and complex disability. The full programme may not be possible because of differing constraints in particular circumstances (see Ch. 5, p. 90); compromise is, therefore, almost always required. The concept of 24-hour management arose in the 1980s when, in adult residential care, the rehabilitation team recognized that it was not sufficient to address postural problems solely during the day (Pope 1985). The uncontrolled positions in which the residents slept were the cause of, or contributed greatly to, the many secondary complications encountered at that time. It was evident that treatment of these secondary complications alone e.g. by passive stretches, corrective splinting for contractures or specific dressings for pressure sores, did little to prevent or correct the problems. Only by managing the posture and position of the resident throughout the 24-hour period, i.e. including while in bed, could these complications be reduced. Thus management of the physical condition of the disabled person rather than treatment became the aim for the professionals involved with people with

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THE COMPLETE PHYSICAL MANAGEMENT REGIME

severe and complex disability in the residential unit in question. It became clear that management concerned not only the professionals involved with the care of the disabled person but also the individual himself and those close to him. It is the professional responsibility of the medical and therapy team to assess the needs and make the recommendations for a given individual but it is up to the disabled person and his care provider(s) to agree those recommendations and to implement them on an ongoing basis (Pope 1988, 1992, 1997). Thus the emphasis changed from what the therapist does to the disabled person to what the disabled person can and will do for himself and, where this is not possible, what his care provider(s) can and will do. To be able to assist with or carry out a recommended programme of physical management the disabled person and the care provider need considerable ongoing support and training on a regular and frequent basis. It is often this ongoing support, consistent monitoring and supervision that are missing (see Ch. 12). While 24-hour management is the ideal, compromise is usually inevitable, but the best compromise can only be made by knowing what the ideal solution is, using that ideal as a basis from which to arrive at the most appropriate solution. This requires in-depth knowledge and experience on the part of the professionals involved as well as cooperation and commitment from the disabled person and his care providers. The following questions may assist in keeping the health care professional (HCP) focused on the holistic purpose of physical management in people with severe and complex disability.

‘What are we trying to do?’ The three main aims are to:

• Maximize

remaining functional ability in the disabled person. • Minimize the secondary complications that accompany severe and complex disability. • Minimize the effort of care. The professional(s) assessing the disabled person and making the recommendations must be quite clear in their own mind what they are trying to do, recognizing the constraints imposed on any recommendations by the particular circumstances

and lifestyle of a given individual. When expectations have been raised too high there can be frustration and disappointment amongst all concerned but most particularly for the disabled person.

‘Why are we trying to do it?’ This question is extremely pertinent. There is considerable documentation related to the distressing consequences over time, of severe and complex disability without appropriate and ongoing management (Asher 1947, Bax 1988, Thomson 1951). Further, the author’s experience is that, however bad the presenting condition, it will worsen unless action is taken to control matters. It is increasingly recognized that treatment, i.e. hands-on therapy, is not sufficient by itself to reduce deterioration of the physical condition even in those with relatively static pathologies such as cerebral palsy or spinal cord injury (SCI)(Charliefue 2005, Condie 1991, Pope 1988, 1992). There is some evidence, albeit descriptive and anecdotal, endorsed by experience, indicating that appropriate management is of benefit to the disabled person in terms of optimizing remaining functional ability and minimizing secondary complications (e.g. Goldsmith 2000, Hagglund et al 2005, Pope 1992, 1997, Pountney et al 2002). Continuing and rigorous research is urgently required, recognizing the difficulties of research in the field of severe and complex disability (see Ch. 11). As seen in previous chapters, emphasis on management of the disabled person does not preclude treatment with the aim of enhancing function or resolving a particular problem, e.g. a contracture. However, management should take precedence and be the foundation upon which treatment is built. For example, there is little point in employing splinting to correct a particular contracture if the circumstances that contributed to the contracture in the first place, i.e. posture and position of the disabled person is not corrected; similarly, a pressure sore will not heal, no matter the treatment applied, if the conditions that caused the sore in the first place have not been relieved (see Case history 2, Ch. 8).

‘What must be done?’ Lack of movement and inability to change position is at the root of most, if not all, problems in this field

A Basic Management Regime

(see Ch. 3). It should, therefore, be possible to introduce procedures designed to minimize the effects of inactivity and static postures. The first step is to recognize that something can be done. Knowing what the underlying problem is determines the principles underpinning a management regime. These are as follows:

• Movement is essential. • Movement, active and/or

passive, must be balanced and symmetrical. • Postural stability forms the basis of functional activity. • Posture influences most, if not all, bodily functions. • Posture influences many positive neurological phenomena, e.g. spasms. • The influence of gravity acting on the body can be controlled by appropriate organization of posture and position. • Handling influences tissue integrity, positive neurological phenomena, comfort and effort of care.

Basic components of a regime

Respiratory care Movement

Leisure activity Posture control

• The

physical and psychological states of the individual are interlinked. • Leisure activities are important.

A BASIC MANAGEMENT REGIME A physical management regime is illustrated in Figure 10.1, encompassing the following components:

• Management

of posture and position in lying, sitting, and standing. • Counter strategies. • Active and/or passive movement. • Use of correct handling techniques by those involved with the disabled person. • Respiratory care, including postural drainage. • Attention to general health, including nutrition. • Participation in leisure/hobby pursuits wherever possible. Each component is important in itself but truly effective management is dependent upon an integrated approach that requires the cooperation of everyone concerned with, and including, the disabled person himself.

Control of posture Positioning and the means of securing a balanced and stable posture are the focus of other chapters in this book (Chs 6,7). Suffice to say it is the first thing that should be addressed when a disabled person presents with neuromotor impairment, as posture influences so many aspects of the physical condition (see Chs 2 & 3).

Counter strategies Handling technique

Counter movement

General health

Figure 10.1 Components of a complete physical management regime.

Counter strategies are postures used to counteract the deleterious effects of an habitual posture that for any reason, usually functional, cannot be changed. For example, in Chapter 2, postures were described that enable limited function but predispose to secondary complications. Counter strategies are best incorporated into the daily routine. There is always the question of how long a position should be maintained for it to be effective in moderating the development of tissue adaptation. Anecdotally, a period of a minimum of half an hour is deemed to be sufficient to maintain

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Figure 10.2 Prone lying, chest supported, feet over the end of the plinth/bed to prevent pressure on the toes and facilitate extension of the knees.

tissue length when the procedure is carried out on a regular, preferably daily basis ( Pope 1997, Pope et al 1991). The most important point perhaps, for effective use of counter strategies, is the consistency and regularity in carrying them out rather than the time for which the posture is adopted. The following are some examples of counter strategies that can be incorporated into the daily routine.

Prone lying

A period of time in prone lying each day with support under the chest, serves to stretch the anterior aspect of the trunk, the hip and knee flexors and relieve pressure in the buttock region (Fig. 10.2). When using this strategy it is important to remember that, to be effective, the prone position must be symmetrical. If alignment is not corrected, the position will do little to stretch any tight tissues. It is recommended that the feet are over the end of the bed or plinth, as this will assist knee extension and overall alignment of the legs, besides relieving pressure on the toes.

Forward lean posture in sitting

The forward leaning posture (see Ch. 6, Section 2) is a very useful counter strategy that can be adopted whilst remaining in the wheelchair provided that there are no serious contractures limiting adoption of this postural configuration. The forward lean posture is best introduced early, before any established tissue adaptation occurs.

Side lying over a support

Lying on one side over a support may be useful where the disabled person is developing a lean to one side, provided that when lying over the support the stretch is applied to the appropriate tissue (Fig. 10.3(a)). Where there is

a

b

Figure 10.3 Surface marking of the spine is used to highlight the spinal curvature when using side lying over a roll to stretch the tissues, to determine if the desired stretch is achieved (a) or not achieved (b).

dominant or unilateral movement with a lean to the side of the movement, it is a challenge to ensure the desired stretch does occur (Fig. 10.3(b)). Highlighting the curve by placing stick-on spots on the spinous processes is a simple way of checking that the stretch is being applied to the correct tissues.

Supported standing

The standing posture is a key component in any management regime for a number of reasons (see Ch. 10, Section 3). It is an effective and usually efficient way of stretching tissues in a largely sedentary person and in this context may be considered a counter strategy. However, there are times when it is of little benefit or no longer practical, e.g., where standing is only possible for a few minutes for various reasons, e.g. pain; where the effort of getting the person into a standing posture is disproportionate or when the disabled person dislikes standing.

Active and passive movement Movement is essential not only for maintaining length and flexibility in the tissues but also to lubricate the joints. Joints rely on movement to


stimulate synovial fluid production and to maintain healthy cartilage (Akeson et al 1987, Houlbrooke et al 1990)(see Ch. 3). It is advisable to introduce a means of stretching the tissues and mobilizing the joints as early as possible in a disease process, e.g. in people with multiple sclerosis, or following trauma such as brain injury or stroke. In progressive diseases the disabled person himself should be encouraged to carry out these stretches wherever possible. By doing so he develops a sense of his own level of ability and, with this self-awareness, he is likely to become sensitive to any change and thus better able to recognize when to seek help. This does not necessarily mean assistance from another person, but given advice and a little ingenuity he is often able to perform his own passive stretches; e.g., using an able hand to extend a paralysed hand. Such a regime is proactive, i.e. attempting to prevent problems, rather than reactive, i.e. addressing problems when they have already occurred. Prevention is always better than cure. As is usually the case when weakness, paralysis or lack of voluntary movement prevents the disabled person from being able to carry out his own passive exercises, help will be required from another person trained in performing these movements. Asymmetry in posture, movement or functional activities gives rise to selective shortening in some tissues and lengthening in others (see Ch. 3). Thus it is important to ensure that all movements are balanced, that is to say, movement in one direction or to one side of the body must be countered by movement in the opposite direction or side of the body. The detection of movement asymmetry should be a signal to the HCP that intervention is required immediately to restore the balance. While it is axiomatic that lack of movement and imbalance of movement give rise to contractures and overstretched tissues, there remains the question of whether and how much passive movement is feasible and practical in everyday life. Harvey et al (2002) reviewed studies carried out to determine efficacy of passive stretching on noncontracted tissues and concluded that while stretching appeared to increase the range of joint motion, the evidence was not robust. Others have reported that tissue length can be maintained, but not increased, by regular, passive stretches

Figure 10.4 Passive movement of the hip joint supporting the leg under the knee and holding the contralateral leg in extension to prevent pelvic tilt.

performed a minimum of three times a week (Linacre 1988 (unpublished), Pope et al 1991). Pope (1997) observed that when illness or holidays interrupted the management regime of the severely disabled people attending an adult centre, tightness in the tissues was noted on return to the centre. It must be stressed that the person carrying out passive stretches must be trained in the performance of these movements. It is not a simple matter of moving the limbs. The properties of the tissues should be understood (see Ch. 1); a force applied too quickly is likely to cause damage where the same force applied slowly allows time for the tissues to lengthen. Care is required when using a long lever, the leg, to flex the hip joint as the resulting moment of force may cause damage to the neck of the femur, particularly when osteoporotic, which must usually be assumed to be the case (Fig. 10.4).

Use of correct handling techniques Correct handling reduces the risk of tissue damage to the disabled person in the form of tissue tears, bruises and even fractures. It also reduces the risk of damage to the people looking after him. Correct handling, i.e. moving and positioning, passive exercises should first be taught and demonstrated by an experience practitioner. However, it is not sufficient just to inform. Acquisition of correct handling technique is like any other skill, it requires practice over time and an understanding of the relevance and usefulness of the skill (see Ch. 2). It is

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essential that the handling be supervised during the practice period to ensure that procedures are carried out correctly. Ongoing and regular training sessions are required to maintain the required standard (Pope 1997)(see also Ch. 12). Correct handling procedures are facilitated by:

• Fully supporting the limb along its length to protect intervening joints (Fig. 10.5).

• Smooth movements. Rapid movements such as

vigorous tucking in of bed sheets may stimulate spasms and thus disturb any positioning that may have been carried out. • Use minimal force; excessive force may cause mechanical damage to the tissues. • Ensuring the co-operation of the disabled person as far as possible, prior to any action, by explaining what is about to take place. The risk of damage to the person carrying out any handling procedure is minimized by adherence to a number of rules. There are many publications that address this topic, for example, ‘The guide to handling people’ (Smith 2005), to which the reader is referred. Particular attention should be given to advising and training those who carry out manual handling in confined spaces such as occurs in many homes. Toilet facilities outdoors, where hoisting is not possible, is a particular challenge. It is usually the principle care provider(s) such as family members who are most affected in these difficult circumstances.

Respiratory care Many, if not all, of those with severe and complex disability are at high risk of respiratory infections. The predisposing factors have been discussed in Chapter 3: a slumped posture, deficient swallowing and aspiration being major risk factors. While breathing exercises might be appropriate in a few instances, those with significant motor impairment are not able to perform such exercises. Respiratory care is directed towards the prevention of infection, which means keeping the lungs and airways free from accumulated secretions. Immobility and reduction in lung excursion, exacerbated by slumped postures (Crosbie & Myles 1985, Hough 1984) gives rise to the accumulation of secretions in the bronchi, bronchioles and in the lung tissue itself, predisposing to infection, therefore postures should be used that facilitate expansion of the chest, as described in Chapter 6, Sections 1 & 2, in sitting and lying.

In sitting The forward leaning posture is particularly useful in sitting where dribbling is a problem, the saliva draining out of the mouth rather than passing down the throat and into the lungs. While this is aesthetically unpleasing, it is, arguably, a better option than frequent infection as a result of aspirated saliva. The tilted orientation when well supported relieves compression on the chest in subjects with MS (Chan & Heck 1999) while Jenkins et al (1988) found decreased lung volumes accompanied a slumped sitting posture in healthy adults. Nwaobi & Smith (1986) reported significant improvement in vital capacity and forced expiration volume per second, in children with CP given more support in sitting. With the head correctly aligned and the trunk supported, tilting, in the author’s experience, is unlikely to increase risk of aspiration. In lying Supported side lying or prone lying are the preferred options, especially where swallowing is impaired or when vomiting or reflux is a problem. The fully supine position is to be avoided as the risk of aspiration is increased.

Figure 10.5 Passive movement at the shoulder while supporting the intervening joints.

Postural drainage When secretions accumulate they can be removed by use of the appropriate gravity-assisted drainage positions in side lying or prone, i.e. lying with support, head down.


When secretions stimulate a cough, there is a tendency to sit the person up rather than lie him down and allow secretions to drain. If brought upright, the secretions pass downwards beyond the point where the cough reflex is stimulated and accumulate in the lung. When a cough is stimulated, the disabled person should be placed in a position where drainage may be facilitated (Hough 1984). If he is seated, and lying down is not feasible, he should be leant forwards. In lying or sitting, percussion may facilitate the drainage and suction may be required to extract the secretions. Percussion is not necessarily contraindicated even in disabled people with accompanying asthma, provided the condition is stable (Barnabe et al 2003). When percussion is given, greater resonance is created with a small folded blanket placed over the chest wall, which in addition facilitates comfort. Instead of manual percussion, the author has found it useful on occasion, to position a vibrating pad against the chest wall with the disabled person in side lying. In those cases where there are copious secretions and/or frequent chest infections, daily postural drainage is recommended as a prophylactic measure. When such a regime is adhered to the incidence of infection may be markedly reduced.

Vacuum suction Vacuum suction may be necessary when the disabled person is unable to expel secretions that have reached the upper respiratory tract. In the conscious person suction can be a highly unpleasant experience and can create great distress if used without due care, causing bleeding and pain within the mouth and throat. Only those with sufficient training should carry it out (Brooks et al 2001, Young 1984).

Maintenance of general health It is recognized that infections, pain, discomfort, etc. will exacerbate clinical features of the disease such as spasms and tremors (Hinderer & Dixon 2001, Norton 2004). Indeed, a sudden increase in these features is an indication of an underlying problem therefore the maintenance of general health is the concern of everyone involved with

the disabled person, not least the person himself, where possible and appropriate.

Nutrition and dietetics Nutrition and dietetics are not topics discussed in this book but they are fundamental in the management of the physical condition of the disabled person. A poor nutritional status, for example, predisposes to tissue damage and infections (Finch 2005, Stratton et al 2003). When nutrition is deficient, usually as a result of impaired swallowing and aspiration of food and drink that predisposes to frequent chest infections, a change from oral to enteral feeding, i.e. via a tube inserted directly into the digestive tract by percutaneous endoscopic gastrostomy tube (PEG) is increasingly considered. The introduction of PEG feeding is a surgical procedure, usually requiring general anaesthetic. In general this has become the accepted procedure where an individual is patently malnourished or has swallowing difficulty. However, there are those who recommend the procedure be performed earlier rather than later when the individual concerned is in a healthier condition to withstand the operative procedure. The procedure is undoubtedly of benefit not only for weight gain but also for a reduction in disease symptoms, as well as producing a feeling of greater wellbeing. In essence, the disabled person is reported to be easier to manage, as Sullivan et al (2005) concluded in a prospective longitudinal study in children with cerebral palsy. The point at which PEG feeding is introduced will differ with the circumstances of a given individual. There is also debate on ethical grounds when this method of feeding is recommended solely to prolong life, as in late stage MS, motor neurone disease, profound brain injury, etc. especially where the person concerned is unable to give consent. While a discussion of the ethical issues is not appropriate here, those involved with the management of individuals in these circumstances should be aware of the dilemma. The reader is referred to the relevant literature (e.g. Bowling 2004, Sleigh & Brocklehurst 2004) for further detail of the procedure, indications and associated issues. PEG feeding has implications for those involved with the physical management of the disabled

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person on a practical level. The timing of the introduction of PEG feeding becomes an issue when considering, for example, custom moulded support (see Ch. 7). Following commencement of this type of feeding it is wise to wait until body weight stabilizes before proceeding with the moulding. The timing of feeds is also important, as physical management procedures, for example corrective positioning and passive stretches, must be organized around these times and the postures and support used adjusted to control reflux. The ideal weight will depend on a number of factors. The HCP most closely involved with the disabled person is in a position to monitor weight gain and to refer to the dietician if there are problems and if gain appears to be too rapid or excessive.

Constipation

Constipation was considered in detail in Chapter 3 but is mentioned as the cause of frequent, often unrecognized, generalized discomfort or ‘unwellness’, with accompanying exacerbation of clinical symptoms (Norton 2004). This problem is difficult to manage where immobility is significant, but every means should be employed to ensure regular evacuation of the bowel. A regular standing regime seems to stimulate bowel action in some individuals (see Ch. 6, Section 3). Abdominal massage is increasingly advocated (Ernst 1999, Preece 2002).

The emotional and psychological state

The existence of a close link between the physical and psychological states of a person is generally accepted. It is therefore of concern to those looking after the disabled person, professional or home care provider, to be alert to any changes in behaviour that might signal distress of some kind. The HCP should also be sensitive to the signs of stress and distress in the care provider (see Ch. 12).

Factors influencing effective management An effective management regime is dependent upon a number of factors, not all of them within the HCP’s power to control.

Early intervention It is not always possible to have access to the disabled person in the early stages of the disease process or to introduce a regime immediately following

trauma. In addition the concept of managing the condition as well as treating it is often not well understood, especially in the early stages of relatively slow deteriorating conditions such as MS. In severe traumatic brain injury, for example, the first concern is, quite rightly, to save a life. In these cases, management measures may be contraindicated as some positioning procedures may increase cranial pressures, compromise respiration or disturb other vital organ functioning (Grant & Andrews 1999). However, as soon as the medical condition permits, management procedures, concentrating on passive movements through full joint range and control of body posture, should be introduced as the first stage in rehabilitation. Early and ongoing monitoring of the young child with cerebral palsy provides the opportunity to identify those at risk of developing associated problems and to take preventative action (Hagglund et al 2005, Pountney et al 2002, Scrutton & Baird 1997). In the case of a person recently diagnosed with MS, early referral to an HCP with experience in the management of severe and complex disability is recommended, recognizing that the condition may not progress for a long time, if at all. The purpose of referral at this stage is to guide the person with MS towards a healthy lifestyle incorporating diet, exercise and stressing the importance of sleep/rest (de Souza 1990, de Souza & Bates 2004). An early management regime can be explained and introduced before there is any significant weakness or paralysis. The early stage of the disease offers the opportunity for developing an understanding of the importance and influence of posture on body structure and function, and of the normal range of movement within the joints. Having gained this self-knowledge the person is alerted to seek help immediately, rather than waiting until serious problems develop, if and when the disease progresses.

Comprehensive assessment Throughout this book the emphasis is on comprehensive assessment and correct interpretation of the findings as the means of accurately identifying the problems and constraints necessary to the making of appropriate recommendations in any given case (see Ch. 5).


Appropriate prescription Appropriate prescription with respect to management follows from the comprehensive assessment and is dependent upon the knowledge and experience of the HCPs involved. As stated on a number of occasions elsewhere in this book, appropriate prescription almost always involves compromise and the best compromise can only be made if all those involved with the disabled person participate in the discussion.

Involvement of the disabled person and primary care provider The success of any intervention is dependent upon the agreement and the cooperation of the disabled person and/or the people caring for him. The HCP’s role in this respect is to communicate the relevant information to the people involved regarding the findings of assessment, the prognosis, the perceived benefits and most importantly the trade-offs of any recommendations. The decision with respect to acceptance of the recommendations is then largely in the hands of the disabled person and/or care provider.

Physical management as a way of life Whatever the management regime recommended it should, as far as possible, become a part of everyday life in much the same way as the relatively nondisabled person with a condition such as varicose veins must learn to manage his problem. A regime is considered a way of life and is usually more acceptable than additional exercises or procedures to the disabled person who may have little energy, and to those caring for him who may have little time. Exercises that are required to ensure a full range of joint movement may be incorporated into washing and dressing activities rather than as a separate exercise regime. Figure 10.6(a) illustrates a woman with multiple sclerosis stretching her arms while putting on a cardigan and in figure 10.6(b) mobilizing her hip joint while putting on her shoes.

Continuing support and education of the disabled person and his care provider(s) Support is essential in all situations where ill health is a concern but never more so than in chronic

disease, deteriorating conditions and severe and complex disability (Courts et al 2005, Murphy 2000, Postill 2005). The HCP’s role is as assessor, adviser and trainer not only of the disabled person but also of his care provider(s). It is vitally important from the earliest stages that the people involved have access to help and advice or even an opportunity just to talk and discuss any worries. People with chronic disability should be kept under regular review (Bax et al 1988, Charliefue 2005, Jahnsen et al 2004). The disabled person will no doubt need episodes of more intensive intervention or treatment. Discharging him after an episode of treatment or intervention is rarely appropriate. His care provider(s) will require regular training and advice in the performance of management procedures. This is a particular necessity in care homes where there are multiple care providers and often a rapid changeover of staff (Murphy 2000, Pope 1997). However, the unpaid primary care provider, usually a relative, is also in need of such support on an ongoing basis. Their situation is often unrecognized and at times desperate (Courts et al 2005, Murphy 2000) (see also Ch. 12). Too often care providers are shown how to do something, whether it be positioning in bed or the wheelchair, or passive movement, but there is little, if any, monitoring of performance or ongoing training (see Ch. 12).

Communication between professionals Communication between all those involved with the care of the disabled person has, arguably, the greatest influence on the outcome of the management of the disabled person. Conditions that are severe and complex usually involve many professionals, often even a number from the same discipline (Pope 1997, Potts 1996). The disabled person may attend as many as three centres during the week and respite care on occasion. In addition, various agencies may be involved, for example social services, district nurse as well as local and possibly regional wheelchair services. In such circumstances, it is not surprising that confusing and often contradictory messages are transmitted to the disabled person, his care provider(s) and between HCPs.

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b

Figure 10.6 The woman has incorporated her range of joint movement exercises into her dressing routine, elevating her arms in (a) and mobilizing her hip joint in (b). a

Differences of opinion between professionals, particularly when from the same discipline, cause confusion and distress. A united approach is therefore critical to effective management. Communication between large groups of people is not easy, especially if they are geographically scattered. The case conference is usually the best forum for discussion. It is here that differences of opinion may be resolved. Where evidence of effectiveness is lacking and opinions differ, one course of action can be agreed and if that approach doesn’t work another can be tried. With careful and complete documentation, which is essential, everyone can learn and benefit, not least the disabled person.

Case conferences are costly both financially and in time, but they have the potential to save a great deal of confusion, distress and money in the long term.

Continuing education of the professionals In the introduction to this book it was mentioned that the management of people with severe and complex disability is a relatively new specialist field. It was pointed out that there is a paucity of knowledge and experience among professionals who may be called upon to have some involvement in management of a seriously disabled person. Currently, there is no requirement to have


any specialist training before becoming involved with people with severe and complex needs. It is argued that this situation must change if efficient, effective management of the disabled person is to be achieved.

In many cases the principal care provider is a relative of the disabled person. It is argued here that the burden of care should not fall completely on the nearest relative. It is certainly difficult, if not impossible, for one partner (husband or wife) to become the care provider of the other while at the same time maintaining the partner role (Courts et al 2005). Situations and circumstances will vary, but there is a case to be made for more specialist centres dedicated to the management of people with severe and complex disability, which would at the same time be a useful resource for the care provider. Freeman & Thompson (2000) and MacLurg et al (2005) have highlighted deficiencies in the community services provided for people with MS, which no doubt apply to the severely disabled population as a whole. An account of such a centre described the effective management that could be achieved in a specialist day centre, in conjunction with the care provider at home, when practicable (Pope 1997). This publication outlined the difficulties encountered and made suggestions as to where improvements could be made in service provision. It was also postulated that regular and ongoing input is usually sufficient to maintain the physical status of the disabled person and may reduce the need for the intermittent episodes of intensive input described by Freeman et al (1997) and Fuller at al (1996).

way (Audit Commission Report 2002). This situation stems from, amongst other things, the fact that traditionally, the group of people in question have been poor advocates for themselves. In addition, until recently, their needs were not recognized. Fortunately, this unhappy situation is changing and must continue to change if we are to manage the increasing numbers with severe and complex disability. The current situation may be provoked into change by calculation of the full cost of treating the secondary complications that arise in severe and complex conditions in comparison with the cost of ongoing management of a person who has not developed complications and presenting the calculations to those in authority. Some research into the effectiveness of 24-hour management of posture has been published (Goldsmith 2000, Hankinson & Morton 2002). Pountney et al (2002) reported the results of a retrospective study of the effectiveness of 24-hour postural management in a group of severely disabled children; a prospective study is in progress. Further well-designed studies in this area are much needed, especially in relation to the adult with severe and complex disability. Much useful information can be collected and interpreted by standardized, accurate and complete record keeping in clinical practice (Freeman et al 2005) and wellconducted single-case design studies (Angelo 1993) can be used to complement research and inform clinical practice. Lobbying for resources is unlikely to be successful without this work. While robust evidence for effective management is not currently available there is plenty of evidence for what happens when ongoing management is lacking (e.g. Ando & Ueda 2000, Asher 1947, Bax 1988, Pope 1988, Pope et al 1991, Thomson et al 1951).

Lack of resources

The psychology of physical management

The need for sufficient resources to effectively manage the physical condition of the disabled person is great. While the proportion of people with severe and complex problems within the population as a whole is small, undoubtedly their consumption of resources is proportionately great. Currently resources do not match the need in any

Throughout this book the content focuses on the means by which the physical condition of the disabled person can be managed so that functional performance is optimized and secondary complications are reduced to a minimum. Nevertheless, the view of what is important to the HCP does not always correspond with that of the disabled person

How realistic is it to expect relatives to undertake ‘management’?

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and/or his care provider (McDonald 2004, Paulsson 1995). While concentrating on the physical aspects of management as a whole it is essential to be aware of the psychosocial aspects of any proposed intervention. Discretionary use of the term abnormal, especially in describing the compensatory posture and movement strategies that arise as a result of impairment, is part of this awareness. The pursuit of normality for its own sake or in the belief that it is only by so doing that a better quality of life can be achieved, requires particular mention. This point has been poignantly illustrated in Paulsson’s report (1995) of the opinions of people born with limb deficiencies as a result of Thalidomide. As adults, these people felt that they were not accepted for themselves, so much effort having been directed to making them fit society’s idea of normality. Most of these efforts were rejected as the children grew to an age when they could decide for themselves, but not without a high degree of pain and suffering along the way. Treatment and training designed to change established functional behaviour should be undertaken when it is anticipated that the person is capable of progressing beyond his current best. The challenge for the clinician is to judge at what point the pursuit of improvement becomes unrealistic, impractical, or the means of achieving it, unacceptable. Nevertheless, management of the condition should continue. Other situations and circumstances arise when the clinical picture clearly indicates a particular line of action but the disabled person is reluctant to accept the recommendations for a variety of reasons, or circumstances prevent implementation. There are many such situations in the field of severe and complex disability. The following serve as examples. The parents who resist the change from buggy to wheelchair as the latter advertises the child’s disability. In addition, the parents may feel it is an acknowledgement that the child will not walk. The person with a degenerative condition using a self-propelling wheelchair is often reluctant to change to powered mobility, feeling that it is a retrograde step and is acknowledging deterioration.

While recognizing the need for the specialist equipment, bed, (wheel)chair, standing frame, these items are rejected because they do not fit in with the home decor. The use of a tray to support the arms or supportive boots or orthoses may be rejected on aesthetic grounds. Powered mobility is sometimes rejected by the disabled person because he feels the exercise of self-propulsion is doing him good. Powered mobility may not be recommended by the clinician on the grounds that the exercise of self-propulsion is good for the disabled person. This view has sometimes been given as a reason for not providing powered mobility to young children (Paulsson & Christoffersen 1984). This study demonstrated not only the physical benefits but the psychosocial and intellectual developments that accompanied provision of powered mobility. A lack of resources often limits prescription even when there are clear indications of benefit (Davies et al 2003). Such situations require sensitive handling, communication, time, and perhaps above all, trust between the people concerned (see Ch. 12).

Leisure activities Leisure activities complement the physical management regime, while therapeutic activities such as those described in Chapter 9 can be considered integral components of physical management. Indeed, in many long-term conditions, it may be possible and more beneficial to substitute conventional therapy, such as exercise, passive stretch and balance training, at least in part, for therapeutic leisure activities such as horse riding and swimming. The motivation to participate in these activities is likely to be greater provided the disabled person is interested in them. It is this author’s experience that combining therapy with an activity that the disabled person is interested in is likely to improve cooperation and enthusiasm. In those with acquired impairment such as MS, the focus is on maintaining hobby/leisure involvement as long as possible, modifying an activity as and where necessary. In people following traumatic brain injury, knowledge of premorbid

Summary

interests may be a means of engaging the person and stimulating participation (see Case history 2 below).

SUMMARY The physical management of people with severe and complex disability is a highly specialized field, involving many people from a number of disciplines in addition to the disabled person and his care provider. Effective management is dependent on initial assessment, agreement of approach by pro-

fessionals, appropriate recommendations, and perhaps most importantly of all, the agreement and cooperation of the disabled person and those caring for him. Compromise will almost certainly be required. The HCP must have the knowledge, experience and sensitivity necessary to make the best compromise. Sufficient resources are rarely available. Only when all these factors are in place can the recommended management regime be applied with confidence and with the expectation of a successful outcome.

Case history 1

Relevant history M was diagnosed with MS in her 20s. Her disease was of the secondary progressive type. M’s disease progressed slowly. During the early stages M learnt the Alexander technique of control of posture. She developed a keen awareness of body posture and the importance of alignment of body segments. As a result of this training M devised a regime of exercises for herself and followed it regularly. She incorporated the exercises into her daily routine. For example, when dressing M would elevate her arm when putting on a shirt or cardigan (Fig.10.6(a)); she would cross one leg over the other when putting on her shoes (Fig. 10.6(b)). In addition, she developed the habit of lying prone for a period of time each day, particularly as she became more dependent on her wheelchair. As the disease progressed, M was referred intermittently to a local hospital as an outpatient for physiotherapy treatment, which consisted mainly of exercises and balance training. M gradually became more dependent on a wheelchair. The lower part of her body was much more affected than the upper part. She retained good functional use of her upper limbs when, in her late 50s, she was unable to look after herself and was admitted to a residential care home. M continued with her regime of exercises as far as she

was able. She attended the physiotherapy department two or three times a week for assistance with her exercises. When no longer able to perform them herself these exercises were performed passively by a physiotherapy assistant. The prone lying regime was continued on a 3–5 days per week basis.

Outcome M eventually became fully dependent for all her care needs. She remained free from significant contracture and did not develop pressure ulcers. M’s case represents static success, i.e. being well maintained (see p. 89), albeit that the disease had continued to progress and her functional ability deteriorated.

Key point M’s case illustrates the benefit of early introduction of a regime, incorporated into routine activities such as washing and dressing and performed on a consistent basis. M’s awareness of her posture was also important. As a result she was able to identify problems as they arose and to seek help when needed. M’s case also highlights the need for commitment and motivation, attributes that are not always available to exploit.

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Case history 2

Relevant history R was the victim of a road traffic accident, which resulted in severe and diffuse head injury. When her medical condition was stabilized she was admitted for ongoing rehabilitation to a specialist unit. On admission, R was in a post-comatose state with sleeping and waking cycles but no communication. She did not appear to recognize anyone, even her fiancé.

Action taken R was positioned in bed in supported side lying as for Case history 1 in Chapter 6. During the day R was seated in a fully supporting wheelchair and in a tilted position.

Figure 10.8 R has progressed to supported standing in an Oswestry standing frame.

Figure 10.7 R placed in standing on a tilt table with the therapist facilitating head control.

Daily prone lying and passive exercises to maintain joint mobility and tissue length were carried out. Supported standing on a tilt table was introduced three times a week (Fig. 10.7). Sensory stimulation sessions were carried out by the occupational therapist, often when R was standing. Percutaneous gastrostomy feeding was introduced. R slowly regained some awareness. R had been a professional musician. The music therapist became

Case History 3

involved with R. It is believed that tapping into this interest greatly facilitated her recovery. R progressed to standing in a frame (Fig. 10.8). Balance training was introduced. R recovered the ability to sit erect in her wheelchair for gradually extended periods of time. Recovery continued and a more active multidisciplinary programme was designed. The speech therapist identified when oral feeding could be safely introduced and introduced communication aids.

Outcome R was discharged home to her family. At the time of discharge she was able to walk with minimal assistance (Fig. 10.9). She used a communication aid as her speech was poor. Although to some extent aware of her condition and her surroundings she was severely cognitively impaired and needed total support.

Key point R’s case illustrates the benefit of a multidisciplinary approach, each discipline working with and complementing the others. Knowledge of R’s interests, particularly her interest in music, demonstrates the usefulness of exploiting the disabled person’s particular hobbies and interests in order to maximize remaining potential. .

Figure 10.9 R was eventually able to walk with minimal assistance, seen here walking with a friend.

Case history 3

Relevant information

On examination

HJ was a 30-year-old man with bilateral hemiplegia as a result of two separate cerebral aneurisms. He was 6 feet 2 inches tall. The first cerebral bleed occurred at the age of 23 and the second at the age of 28. The residual posture and movement deficit was more severe on the right side than on the left. When HJ’s condition stabilized he attended a specialist day centre twice a week on an ongoing basis.

On examination some years after the second bleed HJ presented with: Flaccid paralysis of the right arm with increase in muscle tension in the right arm on effort, for example when transferring. Paresis of the right leg with weakness, particularly in knee extensors and dorsiflexors. Weakness in the right side of the trunk. Clonus of the right calf muscles in standing.

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HJ was functionally independent for most activities of daily living but needed assistance with some dressing and with bathing activities. HJ used a lightweight self-propelling wheelchair. He manoeuvred the chair with his left foot and hand. HJ performed a sideways transfer that was somewhat precarious as his trunk stability was poor.

Action In discussion with HJ it was decided to attempt to increase trunk stability with the aim of increasing the safety of transfers. HJ was very motivated to improve his transfers as he was about to get married. Clonus in the right calf muscles was successfully managed by regular 4–6 month injections of botulinum toxin. At the day centre balance training was introduced which directed effort to strengthening the right side of the trunk. This was achieved using the principles of constraint–induced therapy (Taub et al 1993). HJ’s folded arms were bound to his chest to prevent him from using them to assist balance of his trunk. This was achieved using Theraband, a 15-cm wide rubber strap approximately 3 m in length. Initially, training commenced with HJ seated on a plinth, feet supported on the floor. The physiotherapist gently pushed him from side to side, concentrating on working the right side of the trunk, i.e pushing him towards the left side. Later HJ graduated to sitting on a rocker board placed on the plinth, feet supported on the floor. HJ transferred weight to either side to move the rocker board while at the same time maintaining balance of the trunk (Fig. 10.10). Training continued once or twice a week for a period of approximately 2 months. In addition to this training HJ was encouraged to use the Oswestry standing frame that he had at home. He practised assisted standing against the wall bars and stood in an Oswestry standing frame at the day centre.

Outcome The improvement in HJ’s ability to lean away from his weaker right side is seen in Figure 10.11(a) when compared with Figure 10.11(b). His stronger left side is seen in Figure 10.12 on leaning to the right side. He was not able to stand in the Oswestry frame at home as there was no one to help him to fasten the straps although he could with difficulty just manage to

Figure 10.10 HJ with arms strapped to his side and sitting on a rocker board, using his trunk to transfer weight from side to side.

Case History 3

b

Figure 10.11 (a) HJ is leaning away from his weaker right side. (b) Following training on the rocker board HJ demonstrated improvement in his ability to lean to the left side.

a

transfer from his wheelchair into the frame. The care assistant who attended to his needs was not happy to help him to stand, feeling that it was not within his expertise/duties to do so. The intensity of training diminished mainly due to the priority of other commitments in HJ’s life as a married man and eventually as a father.

Key point The main point to be learned from this case is the intensity of training required not only to increase performance but also to maintain it. Motivation and commitment are essential and are perhaps the greater requirements. It is also important to recognize that the input necessary may conflict with other aspects of a person’s life, i.e. in relation to overall quality of life.

Figure 10.12 The stronger left side is evident in HJ’s ability to lean further to the right side.

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REFERENCES Akeson WH, Amiel D, Abel MF et al 1987 Effects of immobilisation on joints. Clinical Orthopaedics and Related Research 219: 28–36 Ando N, Ueda S 2000 Functional deterioration in adults with cerebral palsy. Clinical Rehabilitation 14: 300–306 Angelo J 1993 Using single subject design in clinical decision-making: the effects of tilt in space on head control for a child with cerebral palsy. Assistive Technology 5(1): 46–49 Asher R 1947 The dangers of going to bed. British Medical Journal 12(13): 967–968 Audit Commission Report 2002 Fully equipped – The provision of equipment to older or disabled people by the NHS and social services in England and Wales. London Barnabe V, Saraiva B, Nunes P et al 2003 Chest physiotherapy does not induce bronchospasm in stable asthma. Physiotherapy 89(12): 714–719 Bax M, Smyth D, Thomas A 1988 Health care of physically handicapped young adults. British Medical Journal 296: 1153–1155 Bowling T 2004 Nutritional support for adults and children. Radcliffe Medical Press, Oxford Brooks D, Anderson CM, Carter MW et al 2001 Clinical practice guidelines for suctioning the airway of the intubated and non-intubated patient. Canadian Respiratory Journal 8(3): 163–181 Chan A, Heck CS 1999 The effects of tilting the seating position of a wheelchair on respiration, posture, fatigue, voice volume, and exertion outcomes in individuals with advanced multiple sclerosis. Journal of Rehabilitation Outcomes Measurement 3(4): 1–14 Charliefue SB 2005 Life after SCI. Age at injury vs. aging issues. Presentation, International Conference on Posture and Wheeled Mobility, Exeter, 11–15 April, p 154 Condie E 1991 A therapeutic approach to physical disability. Physiotherapy 77(2): 72–77 Courts NF, Newton AN, McNeal 2005 Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing 37(1): 20–27 Crosbie WJ, Myles S 1985 An investigation into the effect of postural modification on some aspects of normal pulmonary function. Physiotherapy 71(7): 311–314 Davies A, de Souza LH, Frank AO 2003 Changes in the quality of life in severely disabled people following provision of powered indoor/outdoor chairs. Disability and Rehabilitation 25(6): 286–290 de Souza L 1990 Multiple sclerosis: Approaches to management. Therapy in Practice 18. Chapman & Hall, London de Souza L, Bates D 2004 Multiple sclerosis. In: Stokes M (ed) Physical management in neurological rehabilitation, 2nd edn. Elsevier Mosby, Edinburgh, p 177–202 Ernst E 1999 Abdominal massage therapy for chronic constipation: A systematic review of controlled clinical trials. Forsch Komplementarmed 6(3): 149–151

Finch H 2005 Nutrition and hydration for the vegetative state and minimally conscious state patient. Neuropsychological Rehabilitation 15(3/4): 537–547 Freeman JA, Thompson AJ 2000 Community services in multiple sclerosis: still a matter of chance. Journal of Neurology, Neurosurgery and Psychiatry 69(6): 728–732 Freeman J, Langdon DW, Hobart et al 1997 The impact of inpatient rehabilitation on progressive multiple sclerosis. Annals of Neurology 42(2): 236–244 Freeman JA, Hobart JC, Playford ED et al 2005 Evaluating neurorehabilitation: lessons from routine data collection. Journal of Neurology, Neurosurgery and Psychiatry 76: 723–728 Fuller KL, Dawson K, Wiles CM 1996 Physiotherapy in chronic multiple sclerosis: a controlled trial. Clinical Rehabilitation 10: 195–204 Goldsmith S 2000 Postural care at night within a community setting. Physiotherapy 86(10): 528–534 Grant IS, Andrews PJD 1999 ABC of intensive care. Neurological support. British Medical Journal: 319: 110–113 Hagglund G, Andersson S, Duppe H et al 2005 Prevention of severe contractures might replace multilevel surgery in cerebral palsy: results of a population based health care programme and new techniques to reduce spasticity. Journal of Pediatric Orthopedics 14(4): 269–273 Hankinson J, Morton RE 2002 Use of a lying hip abduction system in children with bilateral cerebral palsy: a pilot study. Developmental Medicine and Child Neurology 44: 177–180 Harvey L, Herbert R, Crosbie J 2002 Does stretching induce lasting increases in joint ROM? A systematic review. Physiotherapy Research International 7(1): 1–13 Hinderer SR, Dixon K 2001 Physiologic and clinical monitoring of spastic hypertonia. Physical Medicine and Rehabilitation Clinics of North America 12(4): 733–746 Hough A 1984 The effect of posture on lung function. Physiotherapy 70(3): 101–104 Houlbrooke K, Vause K, Merilees MJ 1990 Effects of movement and weightbearing on the glycosaminoglycan content of sheep articular cartilage. Australian Physiotherapy 36(2): 88–91 Jahnsen R, Villien L, Stangella JK et al 2004 Being adult with a childhood disease: a survey on adults with CP in Norway. Presentation, 2nd International Seating Symposium, Oslo, Norway, 28–30 April Jenkins SC, Soutar SA, Moxham J 1988 The effects of posture on lung volumes in normal subjects and in patients pre and post coronary artery surgery. Physiotherapy 74(10): 492–496 Linacre S 1988 The effect of passive stretching on knee joint range of movement in a multiple sclerosis patient with pre–existing contracture. Student project BSc(Hons), University of East London McDonald RL 2004 Differences between parents and therapists views of their child’s adaptive seating system.

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Presentation, Australian Rehabilitation and Assistive Technology Conference, Melbourne, Australia, June 2nd–4th MacLurg K, Reilly P, Hawkins S et al 2005 A primary care–based needs assessment of people with multiple sclerosis. British Journal of General Practice May: 378–383 Murphy W 2000 The caring experience: a qualitative study of carers of people with complex disability. MSc thesis, Department of Continuing Education, Oxford University Norton C 2004 Bowel management in multiple sclerosis. Gastrointestinal Nursing 2(6): 31–35 Nwaobi OM, Smith PD 1986 Effect of adaptive seating on pulmonary function of children with cerebral palsy. Developmental Medicine and Child Neurology 28(3): 351–354 Paulsson K 1995 ‘They say I look more normal with artificial legs’ – Children’s needs versus society demands. number 73 Paulsson K, Chrispoffersen M 1984 Psychosocial aspects of technical aids: How does independent motility affect the psychosocial and intellectual development of children with physical disabilities. Proceedings of the 2nd International Conference on Rehabilitation Engineering, Ottawa, Canada, p 282–286 Pope PM 1985 Physical management in long-term disability. Published by the Royal Hospital and Home for Incurables, London, Booklet 1/85 Pope PM 1988 A model for evaluation of input in relation to outcome in severely brain damaged patients. Physiotherapy 74(12): 647–650 Pope PM 1992 Management of the physical condition in people with chronic and severe neurological pathologies. Physiotherapy 78(12): 896–903 Pope PM 1997 Management of the physical condition in people with chronic and severe neurological disabilities living in the community. Physiotherapy 83(3): 116–122 Pope PM, Bowes CE, Tudor M et al 1991 Surgery combined with continued post-operative stretching and

management of knee flexion contractions in cases of multiple sclerosis: A report of six cases. Clinical Rehabilitation 5: 15–23 Postill P 2005 What are disabled young people’s experiences of the service that provides them with wheelchairs? MSc thesis, Department of Health and Social Care, Oxford Brookes University Potts J 1996 Physiotherapy in the next century: Opportunities and challenges. Physiotherapy 82(3): 150–155 Pountney TE, Mandy A, Green EM et al 2002 Management of hip dislocation with postural management. Child: Care, Health and Development 28(2): 179–185 Preece J 2002 Introducing abdominal massage in palliative care for the relief of constipation. Complementary Therapy Nursing and Midwifery 8(2): 101–105 Scrutton D, Baird G 1997 Surveillance measures of the hips of children with bilateral cerebral palsy. Archives of Disease in Childhood 76: 381–384 Sleigh G, Brocklehurst P 2004 Gastrostomy feeding in cerebral palsy: a systematic review. Archives of Disease in Childhood 89: 534–539 Smith J (ed.) 2005 The guide to handling people, 5th edn. Back Care in collaboration with the Royal College of Nursing and the Back Exchange Stratton RJ, Green CJ, Elia M 2003 Disease related malnutrition: An evidence-based approach to treatment. CABI Publishing, Oxford Sullivan PB, Juzczak E, Bachlet A et al 2005 Gastrostomy tube feeding in children with cerebral palsy: a prospective longitudinal study. Developmental Medicine and Child Neurology 47(2): 77–85 Taub E, Miller NE, Novak TA et al 1993 Technique to improve chronic motor deficit after stroke. Archives of Physical Medicine and Rehabilitation 74: 347–354 Thomson AP, Lowe CR, McKeown T, 1951 The care of the aged and chronic sick. E & S Livingston, London Young CS 1984 A review of the adverse effects of airway suction. Physiotherapy 70(3): 104–106

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Chapter

Evidence-based healthcare related to complex disability Wendy Murphy

CHAPTER CONTENTS

It ain’t so much what we don’t know that gets us into trouble as what we do know that ain’t so.

Evidence-based healthcare in perspective 251

Will Rogers, American philosopher cowboy

Introduction

251

Evidence-based medicine

253

The model applied to medicine Evidence-based healthcare Terminology

253

253

Introduction

253

Current emphasis on evidence-based healthcare

EBHC applied to the allied health professions 254 EBHC in the context of neuro-therapy 255 What constitutes evidence?

255

Methodologically sound research that is relevant to the field of complex disability 256 Allied health professionals — the skills needed to carry out EBHC 257 Reflective critique The Journal Club

258 258

Learning and support in groups Summary References

261 262

EVIDENCE-BASED HEALTHCARE IN PERSPECTIVE

259

There is a growing volume of theory relating to evidence-based medicine (EBM), written, presented and taught in many formats and guises and widely available to allied health professionals (AHPs). However, when considering EBM, it is important to remember that it is not an end in itself, but a means to an end. When seeking to find, interpret and apply the theory to practice, there are many challenges, particularly so in relation to people who have severe and complex disability and also to their carers. Greenhalgh (2000) puts EBM into context by suggesting that the ultimate aim is for the achievement of ‘best clinical practice’. She goes on to suggest that there are many difficult questions to answer, and many rivers to cross, before the ‘proof’ of optimal clinical effectiveness can be set before us (Foreword in Evans & Haines 2000). In this chapter, EBM is broadly defined and discussed, including how it evolved to become

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EVIDENCE-BASED HEALTHCARE RELATED TO COMPLEX DISABILITY

evidence-based healthcare (EBHC). There is a discussion that aims to encompass a cross–section of views and attitudes. The overall aims of this chapter are to provide ‘food for thought’ for the AHP, perhaps to demystify some of the issues and to suggest some ideas for promoting EBHC in the workplace.

Background In the late 1980s and early 1990s, founded on the concepts of EBM and presented as ‘problem-based learning’, a pioneering group of academic medics and scientists working at McMaster University in Hamilton, Ontario, introduced a system to teach undergraduate medicine (Sackett et al 1991, Shin et al 1993). In the early 1990s, based on the model from McMaster University, the NHS Research and Development Centre for EBM, was established in Oxford in the UK (Haynes 1991). In the mid-1990s, David Sackett, a consultant general physician then teaching at McMaster University, brought his expertise, experience and enthusiasm for evidence-based medicine to Oxford. In a seminal document, the Department of Health set out plans to modernize the National Health Service (NHS)(DoH 1997). Central to the plans were strategies to encourage a change in the way that the medical professionals made clinical decisions. In keeping with the EBM model, the emphasis was to shift from unsystematic observations and clinical experience to scientific evidence, gathered systematically. Now, more than a decade on, debate continues around the issues involved and opinion remains somewhat divided.

The enthusiast, the sceptic and the moderate At one end of the spectrum are the enthusiasts who subscribe to the purist view that clinical decisions should be based, as a matter of course, on the formulaic system of defining a clinical question, searching the literature, evaluating the evidence and applying the findings to the question (Rosenberg & Donald 1995). Exponents of EBM will refer to hierarchical levels of evidence, with the ‘gold standard’ being large randomized controlled trials (RCTs). They encourage access to a wide and ever increasing body of evidence derived from large, controlled trials to inform clinical decision-making

(NHS Centre for Review and Dissemination 1999). Whilst acknowledging that not all clinical questions can be answered by RCTs, Sackett et al state: It is when asking questions about therapy that we should try to avoid the non-experimental approaches, since these routinely lead to false positive conclusions about efficacy. Sackett et al 1997, p. 4 Certainly, in the context of medical diagnosis and therapy, there is little doubt that some clinical questions can be answered unequivocally by systematic reviews of meta-analysis of data derived from large, randomized controlled trials (Cochrane database online, http://www.cochrane.co.uk). At the other end of the spectrum are the sceptics, who believe that there are significant pitfalls associated with basing medical intervention on statistical evidence that has been derived from scientific study. There are many who agree with Grimley Evans (1995), who suggests, in a commentary, that every individual who presents for healthcare has a unique set of problems and preferences and for each there will be a particular clinical need. That is to say, complex scenarios are unlikely to be effectively addressed by ‘one size fits all’ solutions. He suggests that the experienced practitioner can and should aim to weigh in the balance all physical, emotional, social and psychological elements of patient care. This, he postulates, is central to the clinical decision-making process. Further, he argues that the value of experimental data available to us is questionable. For example: … The accumulation of evidence is now seen to be a more difficult task than we had realised. A high proportion of trials are not retrievable as such from Medline … Many trials are never published (Easterbrook et al 1991) and these are likely to be the ones with inconclusive or negative results … There is a fear that in the absence of evidence clearly applicable to the case in hand, a clinician might be forced by guidelines to make use of evidence which is only doubtfully relevant, generated perhaps in a different grouping of patients, in another country, at some other time and using a similar but not identical treatment. Grimley Evans 1995

Evidence-Based Healthcare

Happily, the growing majority of clinicians take the moderate view that falls somewhere between the extremes described above. David Sackett was one of the leading lights in the march towards the use of EBM and he argues with zeal that practitioners should seek evidence from clinically relevant research to ensure, as far as possible, that their decisions are based on up-to-date information derived from scientific studies. However, he also places great emphasis on the role of the practitioner, whose expertise, he suggests, brings to the decisionmaking process the proficiency and judgement that can only be acquired through clinical practice: External clinical evidence can inform, but can never replace, individual clinical expertise and it is this expertise that decides whether the external evidence applies to the individual patient at all and, if so, how it should be integrated into a clinical decision. Sackett et al 1997, p. 4

EVIDENCE-BASED MEDICINE The model applied to medicine The principles of the evidence-based medicine movement discussed above are, as the phrase implies, about ‘medicine’ and are grounded in the medical model. In other words, at its modern inception, EBM was developed for doctors by doctors and, as such, the research hypotheses were chosen to inform their pressing concerns (Bork 1992, Sackett et al 1996). Predominantly, the primary areas for study are concerned with prognosis, diagnosis, therapy and prescribing (EBM Working Group 1993, 1994, NHS Centre for Reviews and Dissemination 1999). The view of many is that hypotheses pertaining to these areas of medicine can be rigorously tested and firm conclusions can be drawn from the results. The proviso is, of course, that studies must be methodologically sound. That is to say, they must be appropriately designed, scientifically controlled and include enough subjects for any results to reach statistical significance. Where it is applicable to the study design, there should be randomization of subjects to either the intervention or the control group, (as stated above, it is well documented that non-experimental studies routinely lead to false

positive conclusions about efficacy) (Crombie 1996, Hadorn et al 1996, Sackett et al 1997). However, even when close attention is paid to the study design to ensure rigorous science, an interesting study carried out by Counsell et al (1994) gives pause for thought. A series of 44 RCTs were simulated by rolling coloured dice, each roll being a ‘treatment’ and yielding the outcome (death or survival) for that ‘patient’. The allocation of death or survival at each roll of the dice was, of course, due to chance as opposed to a real effect, but a sub-set analysis led to the conclusion that the ‘treatment’ was effective. On the strength of the ‘evidence’ from this trial, the eminent authors advised caution: Chance influences the outcome of clinical trials and systematic reviews of trials much more then any investigators realise, and its effects may lead to incorrect conclusions about the benefits of treatment’ (Counsell et al 1994). So it is known that the effect of chance will have a major influence on even the largest and simplest research studies. It is extrapolated, therefore, that when looking at the results of small studies (where the variables are usually complex), it can be even more difficult to determine what effects were due to the intervention and what due to chance (Crombie 1996, p. 13).

EVIDENCE-BASED HEALTHCARE Terminology In more recent times, certainly from the late 1990s, the EBM model has ceased to be solely the domain of the medical profession. The concept that clinical decision-making, treatment and intervention should be supported by well-conducted research now permeates all areas of healthcare. Most allied health professionals (AHPs) are familiar with the language and thrust of the evidence-based movement. In other words, it is established that all areas concerned with clinical practice should be informed by evidence of effectiveness. It is postulated that, when considering the concept of evidence of effectiveness to include the allied health professions, the term EBM should be substituted by something more appropriately descriptive. There is certainly no shortage of options.

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Bury, for example, suggests ‘evidence-based practice’ (Bury 1996). In their discussion on the ‘paucity of robust evidence on which to base neurorehabilitation practice’, Pomeroy & Tallis challengingly use the term ‘evidence-tinged practice’ (Pomeroy & Tallis 2003). Haynes et al 2002, head their paper, ‘evidence enhanced health care’ (Haynes et al 2002). Grimley Evans goes so far as to say, ‘evidence based and evidence biased medicine’, (Grimley Evans 1995). These suggestions apart, the term used further in this chapter is ‘evidencebased healthcare’ (EBHC), it being the most widely used amongst healthcare professionals (www.mcmaster.ca, www.jr2.ox.ac.uk/bandolier).

EBHC APPLIED TO THE ALLIED HEALTH PROFESSIONS Whether the sympathies of individual practitioners lie with the enthusiasts, the sceptics or the moderates, it is not satisfactory to simply ignore the issues. Fundamentally, EBHC is here to stay. The gathering database should inform clinical practice, i.e. should be used to apply stringent quality mechanisms and purchasing decisions, based on sound evidence of effect, safety and value for money (Bury 1996). In addition, the re-registration of AHPs is linked to continuing professional development (CPD) and keeping up-to-date with current research is integral to the CPD process (Roberts & Barber 2001). Bithell stated, when discussing her thoughts on best evidence as applied to physiotherapy: Evidence-based practice is to be welcomed and the powerful drive within the NHS must be harnessed to spur us on to complete our own cultural change to become a more research-based profession Bithell 2000 As described above, opinions on the concept and application of EBHC are divided and robustly expressed. When applying the model to areas other than diagnostic, prognostic, prescription and therapy in the medical sense, i.e. as applied to the allied health professions, there are real and important issues to be addressed.

For example, as discussed further on in this chapter, when considering people who have a neurological condition and/or injury, the rehabilitative intervention/treatment identified for evaluation may only be a part of an holistic approach and, even when some benefit is perceived, it is often difficult to determine which component of the intervention is responsible. In a discussion paper, Partridge (1996) outlines three major issues that are crucial when considering the implementation of EBHC (in this case to physiotherapy, but the issues apply equally well to other professions). First, she emphasizes that it is important to interpret EBHC according to the model defined by Sackett. That is to say, there must be a balance between the use of evidence and the judgement of the clinician, the two being complementary (Sackett et al 1997, p. 3). Secondly, she questions the wisdom of the preoccupation with the RCT. She argues that there are comparatively few RCTs that inform hypotheses of interest to the professions allied to medicine and they do not always, or even often, represent ‘gold standard’ evidence for that group. For example, an RCT may be designed to investigate the effects of exercise on a treadmill on persons who have had a stroke. But, if, as often happens, the study population has excluded the very elderly and those who were otherwise unwell prior to having a stroke and the individual case being considered happens to be old and/or has underlying medical problems, the results of the study will have little meaning for that individual. Bithell makes a similar point in her paper, which she says is encapsulated in the following quotation: Scientific method focuses on one variable at a time across a hundred identical animals to extract a single, generalisable ‘proof’ … Clinical practice deals with a hundred variables at a time within one animal … in order to optimise a mix of outcomes intended to satisfy the particular animal’s current needs and desires. Cox 1999, p. 114, quoted by Bithell 2000 (Where Bithell refers to the term ‘generalisable proof’, the consideration is, ‘can the results of a study that was carried out on a particular

EBHC in the Context of Neuro-therapy

population, under particular conditions and in particular circumstances, be applied to the individual patient or group of patients in whom I am interested?’). The question of generalizability is particularly relevant to the heterogeneous client group considered in this chapter. Can the results from large, controlled trials be relevant to the individual whose background, base-line condition, treatment, needs, wishes and opportunities are likely to be different in many respects from the study population? Partridge’s third point, and an opinion that is held by many others besides, is that there is a relative paucity of research in many crucial areas. She states that more primary and applied quality evidence is required before clinical decisionmaking can be wholly informed by evidence of effectiveness (Edwards 2000, Partridge 1996, Pomeroy & Tallis 2003). It must be said, of course, that lack of evidence of effectiveness does not necessarily constitute ineffectiveness. For example, we do not need a randomized controlled trial to convince us that it is an effective strategy for therapists to teach a person with a disability to transfer using a sliding board. Happily, we do not wait for evidence that, ‘those people who have been taught to transfer using a sliding board are able to transfer more effectively than those who have not been taught’ before we prescribe a sliding board and teach the person how to use it.

EBHC IN THE CONTEXT OF NEURO-THERAPY What constitutes evidence? As stated above, there is a need for AHPs in all areas of healthcare to make clinical decisions based on sound research, as far as is possible. AHPs working in the specialist field of the management and treatment of those who are profoundly disabled are no different. For the benefit of everyone involved, not least the client group and their carers, we too need to know which of our treatments and interventions are likely to lead to the desired outcome and which not.

However, when attempting to look at the evidence relating to the client group in question, the issues are clouded by the multifarious nature of the circumstances and conditions that impinge on the science to ‘muddy the waters’. Neuro-rehabilitation therapy is about complex interventions, carried out by therapists from varied cultures, backgrounds and beliefs, on an entirely heterogeneous patient group also from varied cultures, backgrounds and beliefs and the outcomes are measured and evaluated in a variety of ways. These variables create significant ‘noise’, which hampers the attempts of the researchers to establish the true effect of the manipulated variable. It is suggested here that, in the complex field of neurorehabilitation, the dependent variables are so many and so diverse that it is almost impossible to get to the truth using research methods most commonly accepted by the medical fraternity as the gold standard in terms of validity and reliability. Therefore, the question has to be asked, ‘is it reasonable to expect that there will ever come a time when there is adequate evidence available that has been derived from high-quality RCTs to answer our questions?’ Consider the area of stroke rehabilitation, where the affected population is fairly well defined and which is, compared to the area of complex disability, reasonably well supported by funding. Even in this field, for various reasons there are difficulties related to study design. For example, it is often more difficult than anticipated to find subjects who fulfil the study criteria and, as a result, the results have less power than originally hoped (Solari et al 1999). It could be argued that, in areas of neurorehabilitation other than stroke, the difficulties inherent in producing large RCTs are even more marked, that is to say, where the population base is smaller, where less is known about the underlying aetiology and where the condition might be progressive. Let us suppose that evidence is being sought to show whether or not standing in a standing frame decreases the risk of an adult with cerebral palsy developing osteoporosis. The type of cerebral palsy would have to be determined, so assume athetoid, (and note that there are problems inherent in defining sub-groups because each person’s definition of athetoid will differ). The type of standing frame must be identified, so assume

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‘prone stander’, (and note that there are likely to be inconsistencies because the angle at which each prone stander is set at will probably differ). To investigate osteoporosis, which is a long-term condition, the study would have to be ongoing for months, if not years (and note that subjects would be likely to drop out because of deteriorating health or a change in circumstance). Assuming that the study fulfilled the ethical requirements, enough young adults who have athetoid cerebral palsy were willing to take part in the study (say 25 randomized to the treatment arm and 25 to the control group) and the study was completed according to the design, the results could still only be applied with confidence to young adults who have athetoid cerebral palsy and who regularly stand in a prone stander which is set at a given angle. In short, for the client group who have profound and complex disability, for reasons related to ethical and methodological constraints, there is currently a paucity of large RCTs on which to rely for applicable evidence and this is likely to remain the case. If, then, in neuro-rehabilitation, the so-called ‘gold standard’ evidence is scarcely available, not applicable, or both, where do we go from here? Perhaps there is a case for determining what is realistic and achievable. Then, using a systematic and cohesive approach, we can work towards establishing and building an evidence base that can be applied meaningfully. Critically appraised topics (Foster et al 2001), clinical guidelines (National Clinical Guidelines for Stroke 2002, Specialist Wheelchair Seating (Marks 2004)), case control studies and cohort studies (Crombie 1996) questionnaire-based enquiries (Oppenheim 1992) and case reports (Partridge 2003) are all examples of non-experimental research or reflective analysis that can contribute to the evidence base, not forgetting either, the ever more important and growing evidence derived from qualitative research (Gibson & Martin 2003). It is also a point to note that, by identifying and considering such work and assimilating the findings into their practice, AHPs fulfil their CPD requirements just as much as if they were embracing the narrower model of EBM. Of course, caution must be applied when interpreting the findings that derive from studies based on individuals or small numbers. Such work can provide information only pertaining to what

did (or did not) work for a particular patient or small group of patients who were subjected to one form of treatment by one therapist and in one set of circumstances. Consider the single case study on a healthy 94-year-old man, designed to determine the single most important factor for his longevity. Analysis of the data reveals that he has smoked cigarettes from the age of 12 and he has no other lifestyle habit that is so consistent. Based purely on the data, the conclusion could be that smoking has contributed to his longevity. This is, of course, absurd, but highlights the pitfalls inherent in studying one subject. Nevertheless, if a series of similar studies were carried out consecutively, ideally in a number of locations, and the findings compared, then valuable data could be generated comparatively cheaply and quickly. That is to say, the results from one case study, if approached scientifically and reported systematically, can lead to further questioning and thence to verification or refutation. For example, Watson & Hitchcock (2004) carried out a single case study on a 34-year-old man who had a severe traumatic brain injury. The young man had rehabilitation physiotherapy intermittently and showed sustained recovery of physical function at follow-up 10.5 years post-injury. Following on from this study, further work was recommended, ‘The extent and nature of such a pattern of recovery and its probable influencing factors merits careful exploration, in order to understand the relevance and timing of treatment’ (Watson & Hitchcock 2004). To return to the smoking analogy, if 10 single case reports were carried out on people who had died of lung cancer and it was shown that 9 out of 10 had been heavy smokers, a possible association between smoking and lung cancer could be identified. From that point, research on large numbers could be recommended, from which the emergent theory could be either verified or refuted.

METHODOLOGICALLY SOUND RESEARCH THAT IS RELEVANT TO THE FIELD OF COMPLEX DISABILITY Having highlighted the issues and problems that undoubtedly affect our chances of amassing ‘gold

Allied Health Professionals – the Skills Needed to Carry Out EBHC

standard’ evidence to answer our specific preoccupations, it must be said that there are areas of research where the body of evidence is substantial and the findings generally relevant. Some examples are given below. Decades of research that has been going on in laboratories, concerned with anatomy and physiology, has contributed to the theory that underpins much of our work. This seminal research is so wideranging and so fundamental to the basic knowledge of the medical clinician that it is difficult to single out particular work. As one example, a particularly meaningful area of laboratory research can be found in the extensive body of work carried out by Williams & Goldspink, which looks at the structure of muscle and the effects upon it in a variety of conditions, for instance, non-use, shortened and lengthened (Simpson et al 1995, Williams & Goldspink 1973). Years of study in the field of human behaviour, following on from seminal enquiry by, for example, Vygotsky (1896–1934) has also contributed much to the body of knowledge that underpins our therapeutic approach, particularly that of occupational therapists (OTs) . There are many areas of research which, whilst not being specifically directed to the client with profound and complex disability (and their carers) are, nevertheless, related to the field, and much can be drawn from this work. When asking a medical question, we have only to put a few key words into the computer to realize just how large is the body of medical research worldwide and it seems to be growing daily. The following are given as examples of research related to the field of complex disability. (The list is neither hierarchical in design nor exhaustive.)

• Stroke

(National Clinical Guidelines for Stroke 2002) • Teaching and learning (Gibbs 1988, Gibbs & Habershaw 1988) • The physiological effects of pressure on the body (Bader 2005) • Moving and handling (Sparkes 2000, CSP COT RCN Statement 1997) • Normal movement (Brooks 1986, Edwards 2000). • Neuro-rehabilitation (Simpson et al 1995, Solari et al 1999)

• Respiratory care (Grant & Andrews 1999, Phillips et al 1999)

• Corrective

and re-constructive orthopaedics (Butler et al 2002, Millar et al 1996, Morris 2002, Saito et al 1998) • Management and service planning (Bannigan 1997, Evans & Haines 2000) • Qualitative (Ledger 2005, Murphy 2000, Postill 2005) • Pharmacology (Ade-Hall & Moore 2000, Creedon et al 2000) • Rehabilitation engineering (Aissoui et al 2001, The Safety Net, online 2005) • Pre- and post-natal infant development (Porter 2004, Scrutton & Baird 1997) • Attitudes, behaviours, quality of life (McDonald et al 2004, Wade 2003).

ALLIED HEALTH PROFESSIONALS — THE SKILLS NEEDED TO CARRY OUT EBHC To facilitate a thorough and informed analysis of the available evidence, the practitioner needs to be able to:

• Frame the clinical question. • Track down the evidence. • Critically appraise the evidence for closeness to the truth, methodological limitations and clinical applicability. • Apply the results of the findings to clinical practice. • Evaluate performance and outcome (Crombie 1996, Sackett et al 1997).

To carry out the steps described above efficiently and effectively, the practitoner must have theoretical knowledge pertaining to literature searching and an understanding of research methodology and critical appraisal skills (encompassing a number of methodological approaches). In addition, importantly, knowledge is needed on how to apply the findings to practice and to evaluate outcome. In a scholarly paper, Pomeroy & Tallis (2003) lament the lack of the skills described above in the population of neuro-physiotherapists. They state that neuro-physiotherapists are expected to deliver evidence-based healthcare, but that many lack in-

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depth knowledge of research methods. As a consequence, the physiotherapists are unable to interpret correctly the strength of evidence derived from research studies. Pomeroy & Tallis express concern that many change certain aspects of their practice based on their interpretation of research papers when the studies are, in fact, fundamentally flawed. They suggest that one way to deter neurophysiotherapists from applying treatment modules for which evidence of effectiveness is unreliable, is for them to acquire a more sophisticated awareness of the strength of evidence that can be ascribed to interventions (Pomeroy & Tallis 2003). It is acknowledged that it is as unsatisfactory for practitioners to rush to change their practice based on flawed assumptions as it is for them to unquestioningly continue their interventions based on tradition. But is it realistic to expect the majority to gain the complex skills needed? To learn the skills in the first place, the practitioner needs commitment, in terms of both time and interest. Once the theory is learned, on the basis that, ‘if you don’t use it you lose it’, there have to be repeated opportunities to apply the theory to practice (Biggs 1999, p. 17). Even supposing that all or even most AHPs have the interest to commit to developing the complex knowledge and skills required, it is increasingly evident that the modern day clinician’s workload is demanding and stress levels are high (Ilot & Murphy 1999, Professional Competence and Education Conference Proceedings 2000). Where then are the time and resources to come from, to enable those who are already fully engaged in clinical practice to commit to developing and applying the skills required? Assuming that there is some weight to the argument that not all AHPs will have the time, interest and commitment to develop the skills required to make best use of the available evidence, what is the way forward?

Reflective critique It is suggested that the expertise of those who do have the required knowledge and skills could be harnessed to good effect. Assuming that those who carry out research are among that number, it would be helpful if authors could write a reflective critique at the end of their research paper or systematic

review or report, wherein the implications of their findings are discussed, e.g.: It is acknowledged that this study, on its own, has methodological weaknesses such that the findings should not be used as justification for using (type of therapy) for (client group) to the exclusion of other therapy. However, the study does generate data to support the findings of other small studies that suggest that (type of therapy) could be a useful additional treatment for patients who have (type of disorder and certain characteristics), within a conventional neuro-rehabilitation programme. The process of reflecting on what the findings of the study really mean regarding the components of the subsequent treatment for each individual within particular circumstances would require an honest and realistic assessment by the researchers. It is suggested that this academic exercise would benefit not only the readers, but also those who carried out the study, who would have the opportunity to place their findings clearly in context.

The Journal Club The concept of the Journal Club is well documented (Ebbert et al 2001, Haynes 1991). Haynes launched the original American College of Physicians Journal Club (ACP Journal Club), the purpose of which was to have an editorial team, expert in critical appraisal, to screen large volumes of evidence pertaining to a specific question for robustness. Busy clinicians can then refer, with confidence, to the evidence presented by the editorial team, secure in the knowledge that it is relevant and valid. A derivation of the ACP Journal Club has been accepted by AHPs as a method of considering and appraising evidence, the aim of which is to give practitioners the opportunity to inform themselves about the level and strength of evidence in their particular field (Ebbert et al 2001, Hammick 1995). However, it is postulated that this by now tried and tested method holds sound only if the individuals involved have the necessary knowledge and skills needed to find and evaluate the evidence and the confidence to contribute in the meetings. Experience suggests that this is not

Allied Health Professionals – the Skills Needed to Carry Out EBHC

always the case and that many Journal Clubs falter, even though they are started with enthusiasm and commitment. For example, the AHP who expends time and energy to organize the first few meetings finds him or herself without the necessary support and is unable to maintain the level of commitment needed and this can translate to a lack of focus and meaning for the participants.

Learning and support in groups At the Nuffield Orthopaedic Centre (NOC) in Oxford, some thought was given as to how to use the basically sound concept of the Journal Club but to overcome some of the known difficulties such as, inter alia, lack of time, awareness of the issues, enthusiasm, confidence and/or skills. A general meeting was held amongst interested AHPs and ideas for modified Journal Clubs, (described from here on as learning groups), were discussed. To make the learning groups as nonthreatening as possible, they were to be accessible at many levels in terms of learning opportunities. The reasons why the groups were established differed, as did the procedures used to explore the issues, but participants’ evaluation of the usefulness of the groups suggests that the overall opportunities for learning were (and are) consistent. So it is that group learning has evolved that appears to have contributed towards overcoming the problems that some, though of course not all, AHPs have regarding relating EBHC to their practice. The small successes described below regarding the promotion of EBHC amongst AHPs through learning groups are encouraging and others may wish to explore similar models. There follows, therefore, a brief description of the groups.

Multidisciplinary meetings to review evidence to bring about change A physiotherapist (PT) and an OT, specialists in the field of complex disability arising from neurological origin, had mutual concerns regarding the service that their clients/carers were receiving in orthopaedic clinics (Carrillo 2003). The perceived problems will, no doubt, be familiar to many, i.e. consultation time too short; no therapists present (therefore orthopaedic surgeon not made aware of

the issues) and no one available to give the clients/ carers support either pre- or post-consultation (Postill 2005). The therapists determined that, to aim to resolve some of the problems described above, significant changes to the clinic were needed. Both had attended the Post-Graduate Certificate in Posture Management of People with Severe Disabilities and had the skills needed to steer a stepby-step process aimed at bringing about change (Carrillo 2003, Evans & Haines 2000, Pope & Murphy 2005). Key personnel were booked in to a series of meetings. For the purposes of communication, it was important that every meeting was attended by an orthotist, a nurse, the orthopaedic surgeon who sees the clients with complex needs and a physiotherapist and occupational therapist from the orthopaedic team, therefore every effort was made to ensure that the date and time was convenient for as many of the prospective attendees as possible and certainly for the main stakeholders. The organizing PT and OT led the first meeting, the main remit being to outline the reasoning behind the bid for change, using supporting evidence. Before initiating any change, a further eight meetings were held, in which available evidence pertaining to the medical, operational and psychosocial issues were presented for consideration. The outcome of this project so far is very positive. The clinic has moved to a venue that offers more space and privacy; time available for each consultation is flexible; the clients’ treating therapists and, if applicable, specialist therapists, are actively encouraged to attend, as are any other AHPs involved, such as orthotists. The orthopaedic surgeon is now comprehensively informed about conservative management of orthopaedic conditions for our complex clients and is a participating, enthusiastic supporter of the ‘multidisciplinary clinic’. Problems that may have occurred where departments were clearly not working together, for example, provision of a spinal jacket and a custom moulded seat and a lycra garment concurrently, are avoided because of the culture of open communication that is facilitated by the joint clinic.

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Multidisciplinary learning groups for the purposes of a general exchange of information The Specialist Disability Service (SDS) within the directorate of the OCE is staffed by a wide range of AHPs, healthcare assistants and therapy technicians. Cross-disciplinary and multidisciplinary working is directed at the highly specialist field that is the subject of this book. In past years a number of the senior clinicians working within the service have, sporadically, attempted to address the issues pertaining to practising EBHC. Strategies have included placing AHPs on various courses on critical appraisal and initiating Journal Clubs. However, as generally seems to be the case, exposure to such opportunities for learning does not appear to have had a measurable effect on AHPs’ ability and/or willingness to practise EBHC. There are documented reasons why there is a gap between the theory of EBHC and applying EBHC to practice (Ebbert et al 2001, Evans & Haines 2000), some of which have been discussed in this chapter. In the case of AHPs working within the OCE, it was thought that central to the problem was a lack of direction and of a cohesive approach. A senior practitioner with the relevant skills was asked to attend an in-service training session, to lead a discussion pertaining to EBHC. All present were potentially interested but expressed concerns as follows:

• There is little point in considering EBHC in our

work for our clients, because there is no evidence to speak of. • The skills of individual practitioners are so limited that a disproportionate amount of time is spent looking for evidence and trying to make sense of it. • Even when individuals or groups of individuals are enthusiastic, the pragmatic demands of clinical and/or managerial matters take precedence over the more esoteric concept that is EBHC. The solution was to designate a person experienced in the practice of EBHC to attend one in every six inservice training sessions, to facilitate the learning group in any way that the group members decide will be helpful. (The facilitator needs to have the time, the skills and the commitment to encourage

and influence the multidisciplinary team to engage in EBHC). Prior to each learning group, the participants identify a general area or specific question that they want the facilitator to consider, an example being ‘specialist seating’. The facilitator then searches the literature for anything related to the subject and appraises the documentation gathered. A synopsis of the strength and levels of evidence and an interpretation of any implications is then presented to the learning group for analysis and futher discussion. Since the inception of the group, it is evident that many of the participants are surprised that, even if there is little evidence relating specifically to special seating for people with neurological impairment, there is plenty of evidence that can be applied more generally. Further, it appears that a facilitator who can give timely advice and support helps to demystify the process of EBHC for some. They relax, begin to appreciate the relevance of EBHC to their practice and some gain the confidence to go on to develop their own skills.

Uni-disciplinary meeting to develop the critical appraisal skills of OTs and OT assistants A senior occupational therapist who had part responsibility for the CPD of OTs and therapy assistants working within the NOC undertook to set in place an opportunity for group learning, with particular reference to critical appraisal. It was known that the group would be mixed in terms of professional status, clinical experience and knowledge of and commitment to critical appraisal. Previous experience, borne out by an appraisal of the literature, suggested that there would be barriers to the longevity of a successful, wellattended Journal Club (Harden & Lilley 2000, Kimber 1991, Klapper 2001, Orpen 2004). In order to mitigate the predicted problems, the group were asked to identify their learning needs at the first meeting, so that future meetings could be constructed in a format that would be acceptable to the majority. The frequency and timetabling of the meetings was also determined on the basis of what the members of the group thought to be realistic, i.e. once every 6 weeks, as part of the inservice training programme.

Summary

The group, which is ongoing, have decided that at the end of each learning group they will identify a research paper to appraise at the following session. The paper is copied and distributed by the meeting organizer in time to give the participants the opportunity to familiarize themselves with the content. To support the OT group leader, a physiotherapist experienced in critical appraisal skills attends the meetings. As each question is applied to the paper under consideration, every opportunity is taken to ensure that all participants understand the issues. Discussion and sharing of ideas is encouraged and plenty of time is left at the end of each session to discuss what relevance the paper of interest might have to practice. Attendance at the meetings by OTs and therapy assistants has been consistent and the evaluation of the content and quality of the learning experience has been very positive.

Factors common to the groups So far, it appears that the learning groups described above are, at least in part, encouraging and facilitating AHPs to embrace the concept of EBHC. Although the groups are different in many ways, it is suggested that there are common elements that contribute to the healthy state of the meetings:

• The

sessions are not labelled ‘Journal Club’, although they sometimes operate as such. – It is thought that some practitioners are comfortable with the idea of attending a meeting about a clinic or an in-service training session, but might be less inclined to attend what they perceive as a formal Journal Club. It is • crucial that the meetings take place at times that are convenient for the majority. – To ensure consistency of approach to EBHC and learning right across departments, it is important that attendance at the meetings is high. It is as well to be circumspect about the frequency of meetings. Experience suggests that once every 6 weeks is about right, where the attendees do not feel under pressure week after week but on the other hand the impetus is maintained. The availability of a facilitator who can give • time and commitment to the group is vital in

terms of support for the group leader and for the participants. • It is suggested that AHPs will be more committed to bringing EBHC to practice if the concept can be made meaningful rather than, as is perhaps sometimes the case, being imposed as an academic exercise. In the groups described, the AHP who instigated the meetings had a definite purpose in mind and made the purpose explicit to the participants. In this way, for the most part, the participants responded positively.

SUMMARY In this chapter, it is said that there are obstacles to gathering and utilizing evidence that is pertinent to the field of neuro-disability and that there is much work to be done. Although AHPs may differ in their interpretation of EBHC and in the emphasis that they place in specific issues, most acknowledge that it is no longer acceptable to carry out traditional treatment without question. The model of EBHC is now firmly established in the health domain and AHPs must and do strive to embrace both the theory and practice, ultimately, of course, to benefit the user. It is accepted that those who are experienced and knowledgeable about EBHC will have learned little that is new, whereas those for whom the concepts and arguments are relatively unexplored may have found this chapter challenging. It is hoped, though, that whatever the background knowledge, the contents of this chapter have brought some of the difficulties and also the opportunities into focus and have placed EBHC related to neuro-disability into context. It is also hoped that practitioners will be inspired to emulate one or some of the strategies that have been tested at the NOC and found to have worked, to do what they can to further the cause of EBHC in the field of complex disability. In conclusion, a positive and supportive attitude and a modern, sensible and consistent approach among managers and staff alike can, and no doubt will, surmount the obstacles to create a cohesive evidence base upon which all AHPs can draw.

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Postill P 2005 What are young people’s experiences of the service that provides them with wheelchairs? Thesis for MSc in Rehabilitation (unpublished), Oxford Brookes University Professional competence and education. Bare necessities or luxuries? 2000 Report on a one-day conference, Manchester. Chartered Society of Physiotherapy, London Roberts EK, Barber G 2001 Applying research evidence to practice. British Journal of Occupational Therapy 64(5): 223–227 Rosenberg W, Donald A 1995 Evidence based medicine; an approach to clinical problem solving. British Medical Journal 310: 1122–1126 Sackett DL, Haynes RB, Guyatt GH 1991 Clinical epidemiology: A basic science for clinical medicine, 2nd edn. Little, Brown, Boston Sackett DL, Rosenberg WMC, Gray JAM et al 1996 Evidence-based medicine: what it is and what it isn’t. British Medical Journal 312: 71–72 Sackett DL, Scott Richardson W, Rosenberg W, Haynes RB 1997 Evidence-based medicine: How to practice and teach EBM. Churchill Livingstone, London and New York Saito N, Ebara S, Ohotsuka K et al 1998 Natural history of scoliosis in spastic cerebral palsy. The Lancet 351: 1687–1692 Scrutton D, Baird G 1997 Surveillance measures of the hips of children with bilateral cerebral palsy. Archives of Disease in Childhood 76: 381–384 Shin JH, Haynes RB, Johnston ME 1993 Effect of problem-based, self-directed undergraduate education on life-long learning. Canadian Medical Association 148: 969–976 Simpson AH, Williams PE, Goldspink et al 1995 The response of muscle to leg lengthening. Journal of Bone and Joint Surgery 77-B: 630–636 Solari A, Philippini G, Gascow P et al 1999 Physical rehabilitation has a positive effect on disability in multiple sclerosis patients. Neurology 52: 57–62 Sparkes V 2000 Physiotherapy for stroke rehabilitation: A need for evidence-based handling techniques. Physiotherapy 86(7): 348–356 The Safety Net 2005 Clinical professionals: Clinical resources in wheelchair transport safety. Online. Available: www.ddssafety.net Wade DT 2003 Outcome measures for clinical rehabilitation trials: Impairment, function, quality of life or value? American Journal of Physical Medicine and Rehabilitation 82(10)(Suppl.): S26–S31 Watson MJ, Hitchcock R 2004 Recovery of walking late after a severe traumatic brain injury. Physiotherapy 90: 103–107 Williams PE, Goldspink G 1973 The effect of immobilisation on the longitudinal growth of striated muscle fibres. Journal of Anatomy 116: 45–55

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Carers of people who have long-term, high dependency needs: caring in society Wendy Murphy

CHAPTER CONTENTS Introduction 265 background 266 Models of healthcare 267 The role of therapist and carers in physical management 268 Specific tasks required of carers by therapists 268 Teaching and supporting carers about aspects of physical management 269 The day-to-day experiences of carers 269 Burden of care 270 Status 270 Temporality 270 Relationships between carers and HCPs 271 Coping strategies employed by carers over time 271 The relationship between carers and HCPs in context 271 The promotion of positive relationships between carers and HCPs 272 Carers and therapists working together, in guarded alliance 272 Conclusion 273 References 274

Care-giving has been referred to as a labour of love (Graham, 1983). The expression highlights the two dimensions of care-giving – what a carer does and what a carer feels. This is not always a positive experience. Instead of emotions of love, carers can feel emotions of fear, frustration and pain. They are involved in their care-giving as society dictates they should be, yet their work goes un-rewarded. They see a future of further degeneration, further crises, further involvement and further arguments with no options in sight. Herein lies the burden of care. Caring is no longer a labour of love. Caring becomes a labour of loss. Braithewaite 1990 p. 7

INTRODUCTION In this chapter, the term ‘carer’ relates to the many unpaid people who look after someone who has a chronic degenerative condition, e.g. muscular dystrophy, multiple sclerosis or motor neurone disease, those who have had sudden onset of disability, e.g. stroke or head injury or those with congenital conditions, e.g. learning difficulties or cerebral palsy. The disabled population present with an amalgam of interacting problems, amongst which are poor or absent control over musculature that adversely affects function and mobility, bladder and bowel dysfunction, little or no speech,

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CARERS OF PEOPLE WHO HAVE LONG-TERM, HIGH DEPENDENCY NEEDS

swallowing difficulties, cognitive loss and learning difficulties. For reasons at least partly attributable to these difficulties, the affected individuals are also prone to psychosocial problems such as anxiety, depression and aggressive behaviour (World Health Organization 1993). Carers can be placed in two broad categories, familial care-givers, i.e. family members or guardians or close friends and paid carers, i.e. those who work in the formal sector on a structured and paid basis. Although both groups play a crucial part, their preoccupations and perceptions of caring duties derive from the circumstances in which they carry out their caring role and, as such, are bound to be different. This chapter addresses the problems and issues raised regarding familial caregivers and their relationship with therapists. To those not completely familiar with the specialist field, it may not be immediately apparent why a book concerned with the physical management of disabled individuals contains a chapter devoted entirely to carers. However, therapists or other healthcare professionals (HCPs) who have worked, or are working, with those who are dependent on carers for their quality of life will appreciate the vital role that the carers play. It is not possible, practical or, indeed, necessary for therapists to provide day-to-day treatment and care for the disabled individual but it is very important that physical management in its broadest sense is ongoing, 24 hours a day, 7 days a week. Therefore, whilst endeavouring to provide timely guidance and professional support, therapists must rely on carers to carry out routine physical maintenance and positioning. In this chapter, issues related to caring for a person who has a chronic, long-term disability are explored. The working ‘models’ within which therapists and other HCPs function are briefly described. The day-to-day stress and strain of being a familial carer is explored in relation to emerging evidence. The relationship between therapists and familial carers is discussed and set in context. Finally, in the light of the facts and theories described, the working relationship between therapists and carers is discussed in terms of, ‘what do carers want from therapists?’ and, ‘what do therapists want from carers?’ and ‘can the two be reconciled?’

BACKGROUND As discussed in the introduction, in the latter half of the twentieth century, average life expectancy rose significantly and the increased survival rates are reflected in the disabled population. People with complex disability have to rely heavily, if not absolutely, on others to maintain a reasonable quality of life and this has considerable implications for those who care for such individuals (Anderson 1992, Department of Health 2005, Robinson et al 1988, Wade et al 1986). In a paper in which current trends in healthcare in Europe are considered, Calman (1995) describes how, with the shift in the late twentieth century from acute to chronic illness, disabled persons are encouraged to play an increasingly active part in their own management and this, because of their need for physical assistance, often necessitates significant input from their carers. It is difficult to accurately determine how many people there are who care for someone who has long-term, high dependency needs. The number is rising continuously. A survey in 1995 found that there are over 6 million people living in the United Kingdom who are registered as disabled and there is a gradual rise in the number of people performing the role of carer for longer than 20 hours a week (CONCAH 1995). A survey in Wales found that 1 in 13 adults reported that they are carers in some capacity (Welsh Health Survey 1998). In 1996, it was estimated that carers provide support worth an estimated £57.4 billion a year (www.carersuk.org). In the contemporary healthcare system, there is increasing emphasis on the provision of home-based care for people with chronic conditions. The role that carers play in managing the circumstances of people who have neurological impairment should not be under-estimated. The care given is paramount to the physical and emotional wellbeing of the recipient and the long-term commitment of carers in providing effective support is known to contribute towards delaying or negating the need for hospital admissions (Barry 1995, British Society of Rehabilitation Medicine 1995). Whilst the issues raised in this chapter are concerned mainly with the day-to-day tasks involved with providing care, it is important to acknowledge that the pragmatic situation related to

Models of Healthcare

caring, that is, the burden, stress and strain, are inextricably entwined with the psychological consequences (Cheung & Hocking 2004). In Australia, at the end of the 1980s, a wide-ranging societal study was carried out by Braithwaite who, when considering how the ‘burden of care’ should be measured, stated, ‘To assume that burden is the “daily activities and personal care tasks provided for another” is to oversimplify care-giving to the point of meaninglessness’. She goes on to say that any discussion about aspects of caregiving must take into account the fact that there is a relationship between at least two people, with all the complexities of intimate human interaction. Cheung & Hocking (2004), who carried out a phenomenological study on carers of people with multiple sclerosis, endorse this view when they point out that it is essential to study not only the stress and strain of caregiving but also the meaning of caring from the carer’s perspective: To reduce their stress and strengthen partnerships, Health Care Professionals need to understand individual carers’ experiences better and be more in-tune with their worries and concerns, so that appropriate care and support can be provided’. Cheung & Hocking 2004

MODELS OF HEALTHCARE The model of bio-medical science, where patients are viewed as body systems and disease categories, has generally prevailed since Descartes introduced his concept of Dualism (1596–1650). He considered that the world was composed of two different kinds of substance — mind and matter, and that mental substance, i.e. consciousness, and physical substance, i.e. matter, are irreducible and independent (Papineau & Selina 2000). However, from the latter half of the twentieth century there has been increasing awareness that there are limitations in relying on the bio-medical model of care to optimize the physical and emotional health of the population (Peters & McClean 1995). The World Health Organization, in the international classification of impairment,

disability and handicap, defines health as a state of complete physical, mental and social wellbeing, not merely the absence of disease and infirmity (WHO 2001). Calman (1995) advocates a conceptual shift towards a more holistic approach regarding the quality of long-term medical and social care. In a discussion paper concerning the approach of HCPs towards neurological rehabilitation, Peters & McClean (1995) describe how rehabilitation used to be modelled on the bio-medical paradigm but has since evolved to an interdisciplinary approach. More recently, current government policy advocates transdisciplinary working towards shared knowledge and expertise among social services and HCPs. In addition, importantly, the current system also encourages inclusion of the disabled person and his or her family in the decision-making process to work towards appropriate holistic outcomes (Department of Health 2000, 2004, 2005). Increasingly then, the modern HCP is required to pay attention not only to the physical aspects of intervention but also to consider the social and emotional needs and wishes of both clients and carers (Morrow 2004, Murphy 2000, Postill 2005, Thorne & Robinson 1989). However, experience suggests that the theory does not always relate to practice. For example, as an early step towards evaluating sleep supports for people with disability, therapists were asked to identify seven characteristics related to the sleep support that they perceived to be most important. The first six of the seven items listed by the therapists were concerned with purely clinical or mechanical qualities, for example, ‘Maintenance of symmetrical body posture’, and ‘Reduced risk of contracture and deformity’. Only the seventh (and last) benefit, ‘Health and emotional gain for the family because the user sleeps better’, was concerned with psychosocial issues (Goldsmith & Goldsmith 1996). If the same task was given to those who use a sleep support system and/or to their carers, it is more than likely that they would be primarily concerned with comfort, ease of use and aesthetics and hardly at all concerned about the physical benefits or otherwise. The apparent discrepancy in attitudes and expectations is explainable because therapists will tend to deal with what they know and understand best and so will carers, and their perspectives are almost always going to be different. However, for

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the sake of the dependent person who is the focus of both the therapist and the carer, it is essential that HCPs approach their relationship with the carers thoughtfully. That is to say, it is likely that the therapeutic aims of HCPs’ care regime will be carried out more effectively if the HCPs understand and give due recognition to the carers’ viewpoint and day-to-day difficulties.

THE ROLE OF THERAPISTS AND CARERS IN PHYSICAL MANAGEMENT What follows is an overview of the issues that relate to the delivery of 24-hour physical and posture management by therapists and carers.

Specific tasks required of carers by therapists Positioning in and use of equipment With the aim of preventing secondary complications, various postural support systems (in standing, lying and sitting) are prescribed to position the disabled person throughout every 24 hours (DeSouza 1990, Healy et al 1997, Pope 1994, 1997, 2000). In the main, postural support equipment is assessed for, prescribed and issued by occupational therapists (OTs), physiotherapists (PTs), orthotists and rehabilitation engineers. To provide intimate customized support for the user, the equipment prescribed has, by definition, many components and much potential for adjustment. When the equipment is set up correctly, (necessarily by an expert) the user benefits from appropriate support. However, if the equipment is not set up correctly, the user can lack support, be uncomfortable and, perhaps, be at risk of pressure damage. Usually at the point of issue, the HCPs involved advise the clients and their carers as to when, where and how to use the item. The equipment is taken home and the carers then have to deal with the practicalities for lengthy periods until (and indeed if) they receive repeated advice. This is an area fraught with difficulties. Whilst the onus is on the carers to assist the person in their care to use the equipment provided, it is likely that they will lack the practical and theoretical knowledge required to optimize the use of the equipment by the person in their care.

Passive stretches Carers are often asked by therapists to carry out passive movements on the person dependent on their care. The issues involved relating to moving and stretching the limbs of those who cannot move for themselves are presented in Chapter 10. It is worth repeating here that a high level of expertise and competence is needed to carry out passive movements. The recipients of passive stretches are likely to be physically frail, to have musculature that can be easily damaged and bones that are osteoporotic (Compston et al 1995). To aim to be effective (or at least not harmful), passive stretches must be done slowly and repeatedly over time (Simpson 1995). In cases where it is appropriate to expect carers to carry out the complex tasks related to positioning in equipment and carrying out passive stretches, it is very important that they receive regular training and advice from therapists (see Ch. 10). However, as discussed further on in this chapter, even when it is possible to deliver education to carers, the training that they receive might not translate into practice.

Therapists’ expectations One of the main preoccupations of HCPs working in the field of complex disability relates to how carers of their clients carry out their instructions in terms of using equipment for posture management and administering passive stretches. Their concern is the extent to which the carer assists the person for whom they care appropriately and successfully. Personal experience and some evidence suggest that many carers will disappoint the therapists regarding the way that they perform the duties expected of them. Often, when therapists visit their client at home, they find that contrary to their instructions and hopes the client has not been placed in equipment properly, regularly or indeed, at all. Sometimes this difficult situation can be compounded by the impression that the carer is not wholly receptive to the therapist’s views and wishes, at times appearing to be apathetic, critical or even hostile. The term most often used by HCPs to describe the ‘failure’ of the carer to comply fully with their advice and instruction is ‘non-compliance’. In a study of attitudes of HCPs towards patients, Mischler (1984)

The Day-to-Day Experiences of Carers

suggests that patient compliance refers to conformity with the medical point of view, with the term non-compliance being used in a way that makes it equivalent to deviance from the unquestioned norms and values of (It is of note that the dictionary definition of non-compliance is disobedience/intractability). In the light of the above, in the context of the modern healthcare system where the aim is for professionals to work with clients and carers to decide appropriate, achievable outcome goals, perhaps the term noncompliance is inappropriate. There are many good reasons why therapists require a certain level and standard of commitment from carers. On the other hand, there are many good reasons why carers cannot, or do not, always meet those standards (Murphy 2000, Pope 1997). Following small study investigations regarding the question of physical management in the community, Pope (1997), amongst others, identifies reasons for, and gives explanations for, why posture management in the home setting falls short of that thought desirable. For instance, it is argued that the disabled person and their carers are masters in their own homes, that their priorities may differ from those of the professional and that the ultimate choice must rest with them. In a small qualitative study to seek to find out about the thoughts and experiences of carers, Murphy found that their burden of care was all-consuming, leaving little time for anything other than the most basic of care, illustrated by the following quote by the mother of a very dependent six-year-old: I mean physically it goes on for ever, W eats little bits at a time … so he’s had a bath and then he wants something else to eat … then it’s a drink and then medicines and then brushing teeth and then it’s going to bed and he needs me 3 hours later and you know this is going to be a routine every single night with no end in sight. Murphy 2000

TEACHING AND SUPPORTING CARERS ABOUT ASPECTS OF PHYSICAL MANAGEMENT Many involved in healthcare advocate that interventions targeted at carers should include

education and skills training in posture management techniques (Evans et al 1992, Howard 1998, Marks 2004 (Specialist Wheelchair Seating)). In keeping with this basically sound idea, many therapists and other HCPs are of the opinion that the way to improve the so-called compliance of carers is to teach them how to carry out the tasks required of them (Peters & McClean 1995, Rose et al 1998). Certainly, training for the acquisition of skills is essential. Without some background knowledge and the basic skills, carers will be ill-equipped to do what is required of them. However, for a variety of reasons, there are difficulties and challenges implicit in delivering training to carers. In 1999, Murphy set out to design a series of teaching sessions, to be delivered by therapists to family caregivers. There was to be a 1-hour session a week for 4 weeks. The first would provide a background to posture management and the rest would cover passive stretches, positioning in lying and positioning in sitting. Designing the sessions did not present a problem. However, when initial approaches to even the most committed of carers met with a lukewarm reception at best and outright refusal at worst, it became apparent that there were barriers to recruiting the carers to attend the sessions. Embedded in the literature on teaching and learning is the premise that in order for a person to learn, there has to be motivation to do so. In addition, there must be commitment and, importantly, willingness to put what has been learned into practice (Biggs 1999). It was obvious then that there was little point in pursuing the idea of training for carers when they, for some reason, were not even willing and/or able to attend training sessions, let alone be committed to ‘practise what was preached’.

THE DAY-TO-DAY EXPERIENCES OF CARERS Having abjectly failed to recruit the targeted carers onto the proposed training programme, it was decided that prior to pursuing the teaching project further it would be expedient to find out what the barriers might be to providing training. Also of interest was the likelihood of the acquisition of knowledge (by the carers) translating into the desired outcome (quality positioning in equipment

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and passive stretches of carers’ dependants). Broadly, the issues to be explored were:

• What are the main concerns and preoccupations

in the lives of people who look after someone who is multiply disabled? • What are the day-to-day demands? • Is there a ‘common experience’? • How do they view their role vis-à-vis managing the posture of the person in their care, including helping them to use equipment? Thus a research project was carried out, ‘The caring experience: A qualitative study of carers of people with complex disability’. Five carers of a very disabled dependant were interviewed, the resulting transcripts giving vivid accounts of their feelings and experiences. The study added a more recent perspective to the findings of Glendinning and Braithwaite, both of whom carried out qualitative studies of carers, Glendinning in Yorkshire in 1983 and Braithwaite in Australia in 1990. It is interesting to note that little seems to have changed in the intervening years and also that the experience of being a carer is similar whether in Oxford, Yorkshire or Australia. Informed by the findings of Glendinning, Braithwaite and Murphy (2000), a brief description of the ‘carer experience’ follows.

Burden of care The main effect of looking after a dependent person is to impose a ‘burden of care’. It is apparent that the burden of care experienced by carers influences every aspect of their lives. High levels of physical, psychological and social stresses are involved in caregiving where the daily routines are repetitious and physically demanding. Also contributing significantly to their state of exhaustion are psychosocial factors, illustrated by their references to the effects of caring on their emotional health, as one mother said, ‘It burns you out actually, it burns you out.’ In addition to the day-to-day routine, carers also have to concern themselves with a catalogue of other issues, which include appointments with healthcare professionals, social services and people working in education; obtaining, maintaining and replacing equipment; identifying and obtaining respite care and campaigning for services. These organizational

issues, which are extra to routine care, are elements of the carer’s role that give rise to stress and antagonism. The equipment needs of those in their care are a particular source of stress, frustration and confusion. For instance, the acquisition of suitable, manageable items of equipment as and when needed is often fraught with difficulty. Often, the problems are not solved once and for all when equipment has been acquired. In the estimation of the carer, the wheelchair or standing frame or sleep support can turn out to be unsuitable, difficult to maintain, bulky, unattractive and sometimes all of those things.

Status Carers perceive that the job that they do is important, knowing that their contribution often makes the difference between the person in their care remaining at home or having to go into residential care. Many think that their status is ranked low amongst professionals, who do not properly appreciate that they do a difficult and worthwhile job.

Temporality There is much in the carer experience connected to aspects of time, that is to say, experiences they have had in the past, the pressures associated with the present, and anxieties about the future. Negative aspects of the past include the way that the diagnosis was given and the impression that, as the extent of their disabling condition became apparent, the dependent person was ‘written off’ by the healthcare system. In the present, daily pressures are unrelenting. Concern about the future is an oppressive source of anxiety and sadness, sometimes to the point of despair. A worry common to all carers is that there might come a point when they can no longer cope. Another problem associated with the future, and one which most carers indicate causes much stress, is the constant round of having to secure equipment and services as the needs of the person in their care change. In summary, the passage of time represents increasing physical and emotional demands, anxiety and accumulated weariness. Carers generally recall negative episodes in the past, focus their energies

The Relationship Between Carers and HCPs in Context

and resources on getting through each day in the present and worry about the time in the future when they will no longer be able to cope.

Relationships between carers and HCPs Carers place importance on both the level and nature of the support that they receive from HCPs. Many are of the opinion that HCPs are not empathetic to their situation, although there are some exceptions to that. Attitudes and approaches deemed to be very unhelpful are lack of foresight, lack of interest and incompetence. Conflicting advice from therapists is particularly difficult to cope with, as is any suggestion that they are being patronized. Murphy (2000) found that negative behaviours by HCPs engender frustration and anger. (Applied to HCPs, words such as attack, hatred, discredited, failure, revenge and loathing appeared in the transcripts of the carers’ interviews). Unsurprisingly, carers find the antitheses to the behaviours described above helpful, for example, decisiveness, clarity, efficiency, willingness, respect and empathy.

COPING STRATEGIES EMPLOYED BY CARERS OVER TIME The way that carers perceive their relationships with HCPs, and the strategies that they develop to deal with situations, evolve over time. Bury’s description of chronic illness suggests that the advent of someone within the family having a chronic, dependent condition disrupts the structures of everyday life. He considers that carers concentrate on mobilizing resources as one way to deal with their altered situation (Bury 1992). Flanagan also expresses the view that carers employ methods of negotiation (in this case carers of people with traumatic brain injury), explaining the phenomenon as coping strategies (Flanagan 1998). Consistent with these findings, Murphy found that carers reveal how they obtain attention and equipment by using various strategies of negotiation (Murphy 2000). Robinson & Thorne investigated the experience of families coping with chronic illness on a daily basis. Subsequently they carried out a multi-phased

qualitative investigation of the patients’ and their carers’ perspectives of healthcare relationships (Robinson & Thorne 1984, Thorne & Robinson 1988, Thorne & Robinson 1989). From this work they conceptualized a model of ongoing relationships between HCPs, people with chronic conditions and their family carers, which they called the ‘stage theory’. They describe how relationships progressed from naïve trust to disenchantment and finally to guarded alliance. At the stage where the person with the chronic condition and their families enter healthcare relationships, they have naïve trust in the ability of healthcare professionals to alleviate their problems. As, inevitably, their trust is shattered in the face of unmet expectations and conflicting perspectives, they enter a stage of extreme anxiety, frustration, confusion and profound distrust, i.e. disenchantment. Eventually, they enter the third stage, that of guarded alliance, described thus: In the resolution stage an alternative form of trust is reconstructed on a more guarded basis so that the patient and family can continue to receive health care. This reconstructed trust is highly selective and is contingent on the revised expectations of the roles of both patient and provider. Thorne & Robinson 1989 In other words, as carers gain experience in their role, they devise coping strategies whereby they learn to negotiate with agencies and HCPs to obtain the services that they need (Bury 1992, Flanagan 1998, Folkman & Lazarus 1985, Thorne & Robinson 1988, 1989).

THE RELATIONSHIP BETWEEN CARERS AND HCPS IN CONTEXT In summary, when someone, by force of circumstance, has to become a caregiver, their life is profoundly disrupted (Braithwaite 1990, Bury 1992, Glendinning et al 1983, Murphy 2000, Thorne & Robinson 1989). Carers’ burden of care is allconsuming and they have to concentrate their efforts on getting themselves and the person for whom they care through each day. They have little emotional or physical energy left to deal with matters that, for

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them, appear to be relatively unimportant. It is not an exaggeration to say that their caring role can represent, for them, long-term misery. They have to rely on HCPs for advice, support and provision of services but, because of the complexities of human relationships, communication between carers, patients and HCPs can often lead to misunderstandings and tensions. Evidence suggests that therapists are not always aware that their interface with carers is unsatisfactory (Anderson 1992, Bury 1992, Royal College of Physicians Prince of Wales Advisory Group 1996). One of the drivers of misunderstanding can be that therapists’ perceptions of what carers need, and what carers actually need, do not coincide. Indeed, their perceptions of the effectiveness of therapeutic interventions can differ widely and, as a consequence, even though the therapist may be satisfied with their intervention, the carer perceives that the needs of their dependant have not been met. It is interesting that a survey by the Royal College of Physicians Prince of Wales Advisory Group (1996) found that therapists think that they are more effective than carers really judge them to be. However, whilst there is no doubt that carers face many difficulties, it must be said that HCPs, most particularly referring here to therapists, also face enormous challenges related to time and resources. For example, the amount of time available to HCPs for each episode of care is extremely limited. The National Association of Paediatric OTs recommends a ratio of one Senior OT to 30 clients but, in fact, their caseload is likely to be closer to 150 clients, with a waiting list of up to 40. Therapists working in some wheelchair services seem to be particularly overloaded, it being not unusual for two or three part-time staff to have responsibility for 4000 wheelchair users (personal communication 2005). In addition, funding for the equipment required to optimize posture management is often inadequate, to the point where the most appropriate device cannot be secured in a timely manner or even at all (Audit Commission 2002). It is important to note here that, whilst the content of this chapter so far has gone some way in explaining why the behaviour of some carers can be aggressive and challenging, such behaviour, exhibited towards HCPs who cannot ‘fight fire with fire’ is not necessarily excusable. Where the

relationship between carers and HCPs is based on disenchantment, i.e. where the carers are angry, frustrated and confused, real difficulties and unhappiness can be the result not only for the carers but also for the HCPs involved and, importantly, for the person who is their focus. Far too often, a confrontation between an angry carer and a poor beleaguered therapist who has no doubt done their very best under difficult circumstances is the ‘straw that breaks the camel’s back’ and another experienced practitioner is lost to the NHS. It goes without saying that these confrontational situations, where everyone is the loser, are best avoided, but the question is, ‘how?’

THE PROMOTION OF POSITIVE RELATIONSHIPS BETWEEN CARERS AND HCPS Carers and therapists working together, in guarded alliance In the context of the demanding workload of the average HCP, it could be seen by some as unrealistic to expect that they spend time and energy in working at their relationships with carers on top of all the other, more pragmatic, demands. However, it is hoped that the argument for the holistic model of care discussed earlier in this chapter has been persuasive. Each case, of course, is different and there are difficult situations that will arise no matter how thoughtful and empathetic the therapists are. However, the strategies of approach suggested below may help to avoid the build-up of frustrations and misunderstandings that can all too often lead to confrontational situations.

Time for communication as a resource As has been said many times already in previous chapters, the person who has a profound level of disability presents with a complexity of problems related to their physical, social and psychological circumstances, which affects not just them but also their carers. If HCPs are to be able to assist them, at the start of the working relationship it is absolutely crucial to find out from the client and their carers what it is that is wanted. It is also important that the

Conclusion

therapists involved have the time to explore with the clients and carers what can be realistically offered within the constraints of the time and resources at their disposal. In addition, the carers must be able, without pressure, to give a realistic account of the time and commitment that they have at their disposal (or not) to assist the person in their care with their physical management as per the therapist’s instructions. All of this requires sensitive and honest negotiation, which is, by necessity, time-consuming but which is essential. Therefore, there must be time:

• to carry out an assessment detailed enough to

gather all information needed to form a comprehensive and clear picture of the required outcomes • to write a comprehensive and thoughtful report, preferably soon after the client has been seen, so that the encounter is fresh in the mind • for timely follow-up appointments to bring the planned outcomes to fruition • to teach the carers, at the point of issue, how to help the person in their care to use the equipment • to provide further training (as revision) as often as is necessary (which may be frequently at least at first) at a time and venue that is convenient for the client and carer • to provide general support and encouragement as reassurance for the carer that they are doing the right things. Of course, making/finding the time for the above is very difficult indeed but it essential. If time and resources are not invested as described above, there is a risk that serious mistakes will occur, which are not only financially costly but which are also detrimental to the health and wellbeing of the disabled person. It is time now that ways are found to improve the delivery of assistive technology as set out in various guidelines and documents (Audit Commission 2002, Department of Health 2004, 2005). It is suggested here that those therapists who find that the demands on them are so great that they have no hope of being able to approach an episode of care as indicated above make strong representation to senior staff to get things changed. Perhaps then progress can be made.

Full involvement by the client and carer throughout As emphasized in the government report on assistive technology, if equipment is to be used correctly and consistently, it is essential that both the client and their carer are satisfied with it in the first place (Audit Commission 2002). Therefore, the client and their carer must be involved from assessment, through selection, to issue, so that their needs and wishes can be taken into account. In this way, the chances of acceptance of the equipment are increased (see Ch. 5).

Reciprocal trust A very important part of the development of workable relationships between carers and HCPs is ‘reciprocal trust’. With reciprocal trust as a base, as they gain experience, the majority of carers will readily locate their relationships with HCPs within the framework of guarded alliance. A basis for a satisfactory relationship can be formed when therapists:

• earn

the trust of carers by behaving empathetically towards them

• show

that they trust the carers by demonstrating that they value the expertise that they have in terms of the care that they provide. In other words, HCPs must pay attention to the quality of their relationship with their clients and carers by exhibiting the professional approaches that are found to be most helpful, i.e. decisiveness, clarity, efficiency, willingness, respect and empathy. Also, they must strive to acknowledge that, although carers do not have specific professional skills, they do know the person in their care best and they will have an idea of what it is that they want. When ‘what it is that they want’ does not coincide with ‘what it is that the therapists want’, then, as discussed throughout much of this book, compromise must be the name of the game.

CONCLUSION It is notable that referring to the strategies described above aimed at creating positive working rela-

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tionships, the onus is on the therapist rather than on the carer, to:

• create the time needed • involve the client and carer throughout • develop reciprocal trust. The pressure on therapists to respond to the emotional demands within these delicate relationships is great and perhaps sometimes we would that it was otherwise. However, it is the reality, and it is the job. Carers have vividly described the fact that they are constantly ‘groaning under the strain of their burden of care’ and, whilst it is also acknowledged that HCPs are working under considerable difficulties, at least they can walk away from stressful situations at the day’s end when carers cannot. Any HCP who has had a long and emotionally bruising encounter with clients and/or their carers

will certainly not wish to repeat the experience. It is hoped that, by drawing attention to what it is that carers want from HCPs, therapists can aim to forge positive and strong working relationships and thus avoid the upsetting and negative confrontations that can occur when carers have been unable to move from the ‘disenchantment’ stage. It is proposed that in the long term, an empathetic approach by HCPs, where clients and their carers are included in the decision-making process and where the almost inevitable compromises are made, will bring about satisfactory conclusions to episodes of care. Mutually trusting and positive relationships are likely to be costeffective, will alleviate emotional and professional turmoil and will make a positive contribution towards the delivery of the best outcome to the client and carer. You see … it’s easy.

REFERENCES Anderson R 1992 The aftermath of stroke: The experience of patients and their families. Cambridge University Press, Cambridge Audit Commision 2002 Fully equipped: Assisting independence. Audit Commission Publications, London Barry J 1995 Care-need and care-receivers: Views from the margins. PhD Research Project, Economic and Social Research Council, Swindon Biggs J 1999 Teaching for quality learning at university. Society for Research into Higher Education. SRHE and Open University Press Braithwaite VA 1990 Studies in society: Bound to care. Unwin Hyman Ltd, London British Society of Rehabilitation Medicine Working Party Report 1995 Bury M 1992 Chronic illness as biographical disruption. Sociology of Health and Illness 4(2): 167–182 Calman M 1995 Citizens views on health care. Journal of Management in Medicine: 9(4): 17–23 Cheung J, Hocking P 2004 Caring as worrying: the experience of spousal carers. Journal of Advanced Nursing 47(5): 475–482 Compston JE, Cooper C, Kanis JA 1995 Bone densitometry in clinical practice. British Medical Journal 310: 1507–1510 CONCAH (Continuing care at home) 1995 Disability, dependency and palliative care. CONCAH, London Department of Health 2000 A health service of all talents: Developing the NHS workforce. DoH, London

Department of Health 2004 The NHS Improvement Plan–putting people at the heart of public services. HM Government. Online. Available: www.dh.gov.uk Department of Health 2005 The National Service framework for long–term conditions. HM Government, London DeSouza L 1990 Multiple sclerosis–approaches to management. Therapy in Practice, Series 18. Chapman and Hall, London Evans RL, Hendricks RD, Haselkorn et al 1992 The family’s role in stroke rehabilitation: A review of the literature. American Journal of Physical Medical Rehabilitation 71: 135–139 Flanagan DAS 1998 A retrospective analysis of expressed emotion and affective distress in a sample of relatives caring for traumatically injured brain–injured family members. British Journal of Clinical Psychology 37: 431–439 Folkman S, Lazarus RS 1985 If it changes it must be a process: A study of emotion and coping during three stages of a college examination. Journal of Personality and Social Psychology 48: 150–170 Glendinning C 1983 Unshared care: Parents and their disabled children. Routledge and Kegan Paul, London. Goldsmith L, Goldsmith J 1996 Symmetrical body support: A carers guide to the management of posture. Symmetrikit Engineering Ltd; The Helping Hand Company, Ledbury Ltd Graham H 1990 Caring: A labour of love. In: Finch J, Groves D (eds). A labour of love: Women, work and caring. Routledge and Kegan Paul, London, p 13–30

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Healy A, Ramsay C, Sixsmith E 1997 Postural support systems: their fabrication and functional use. Developmental Medicine and Child Neurology 39: 706–710 Howard V 1998 A study of training offered to caregivers of clients prescribed postural seating systems. Dissertation for MSc by Advanced Study In Occupational Therapy (unpublished), Jersey, UK Marks LJ (ed) 2004 Specialist wheelchair seating: National clinical guidelines. British Society of Rehabilitation Medicine, London Mischler EG 1984 The discourse of medicine: Dialects of medical interviews. Ablex Publishing Company, Norwood, NJ, Ch. 2. Morrow M 2004 Duchenne muscular dystrophy – a biopsychological approach. Physiotherapy 90: 145–150 Murphy W 2000 The caring experience: A qualitative study of carers of people with complex disability. MSc, Evidence-Based Health Care (unpublished), Department of Continuing Education, University of Oxford Papineau D, Selina H 2000 Introducing consciousness. Icon Books Ltd, Cambridge Peters MD, McClean M 1995 The evaluation of the clinical scientist model of neurological rehabilitation. Brain Injury 9(6): 543–552 Pope PM 1997 Management of the physical condition in patients with severe neurological pathologies living in the community. Physiotherapy 83(3): 116–122 Pope PM 2000 Postural management and special seating. In: Edwards S (ed) Neurological physiotherapy: A problem solving approach. Churchill Livingstone, London Pope PM, Bowes CE, Booth E 1994 Postural control in sitting: The Sam system – Evaluation of use over three years. Developmental Medicine and Child Neurology 36: 241–252

Postill P 2005 What are young people’s experiences of the service that provides them with wheelchairs? Thesis for MSc in Rehabilitation (unpublished), Oxford Brookes University Robinson CA, Thorne SE 1984 Strengthening family ‘interference’. Journal of Advanced Nursing 9: 597–602 Robinson I 1988 Reconstructing lives: Negotiating the meaning of multiple sclerosis. In: Anderson R, Bury M (eds) Living with chronic illness. Unwin Hyman Ltd, London Rose W, Pain H, Buckland S et al 1998 Providing appropriate information to patients and carers following stroke. Journal of Advanced Nursing 28(4): 794–801 Royal College of Physicians Prince of Wales Advisory Group on Disability 1996 The Disability and Rehabilitation Open Learning Project, London Simpson AH, Williams PE, Goldspink et al 1995 The response of muscle to leg lengthening. Journal of Bone and Joint Surgery 77–B: 630–636 Thorne SE. Robinson CA 1988 Health care relationships: The chronic illness perspectives. Research in Nursing and Health 11: 293–300 Thorne SE, Robinson CA 1989 Guarded alliance: Health care relationships in chronic illness. Journal of Nursing Scholarship 21(3): 153–157 Wade DT, Leigh-Smith J, Langton-Hewer R 1986 Effects of living with and looking after survivors after stroke. British Medical Journal 293: 418–420 Welsh Health Survey 1998 The National Assembly for Wales, Cardiff. Online. Available: www.wales.gov.uk/ subihealth/topicindex-e.htm World Health Organization 1993 The ICD-10 classification of mental health disorders. WHO, Geneva World Health Organization 2001 International classification of functioning, disability and health. WHO, Geneva

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Index

Note: page numbers in bold refer to figures

A Abdomen, pressure within, 17 Abdominal massage, 62 Abdominal muscles forward flexion of trunk, 17 postural analysis, disabled population, 35 stabilizing function, 17 urine retention, 61–62 Acceleration, law of, 2 Acetabulum, development, 3, 15, 133 Action and reaction, law of, 2 Active extensor behaviour, 39, 40, 74–75, 152, 163–164 Active movement, 234–235 assessment, 92, 96, 97 Adductor tenotomy, 184, 192 Analgesics, 178 Ankle foot orthoses (AFOs), 137 Ankle joint, 15–16, 18 Anticipatory postural reactions (APR), 27–28 Antispasm agents, 178–180 Apophyseal joints, 14, 17, 34 Arm supports, 118–119, 129–130, 129–130 Arm(s) see Upper limb(s) Ashworth scale, 77, 95 Aspiration, 60–61, 236 Assessment, 87–88 data collection, 90–91 data presentation, 96, 97–98 goal setting, 97, 99, 100 interviews, 95

objective setting, 90–91, 97 physical examination, 91–97 procedure, 95–97 range of outcomes, 89–90, 89 time for, 100 underpinning principles, 88–89 Assisted walking devices, 138, 138 Association of Chartered Physiotherapists in Therapeutic Riding (ACPTR), 198–199, 212, 214 Ataxia, 79 hydrotherapy, 216–217 management, 83 Athetoid movement, 78, 116 assessment, 95 custom moulded seating, 153 management, 81, 82 hydrotherapy, 81, 227 support in sitting, 116, 117, 126, 126 Axial rotations, 104, 105

B Babinski response, 72 Backrests, 120, 121, 130 Backriding, 207–208 Baclofen, 179 Bad Ragaz Ring Method, 220 Balance associated reactions, 74, 75 body mass and, 6 centre of gravity, 7 compensatory strategies, 32, 52–53 constraint-induced therapy, 246, 246 equilibrium development, 26, 27–28 horse riding, 200, 203, 204, 208

hydrotherapy, 220–221 postural analysis, 33–43 postural function, 23, 23 rocker boards, 81, 82, 246 role of upper limbs, 13, 14 Ballistic movements, 78–79, 79, 83, 83 Barthel Index, 93 Basal ganglia effects of lesions, 77–79, 81–83 motor learning, 30 Bending, direction of, 104, 105 Bending forces, 2, 3 Bending moments, 4–5, 5 Biomechanics, 1–11 tissue damage, 3, 54, 55–57, 56 Biomedical model of care, 267 Bladder function, 62–63, 134 Blood pressure, supported standing, 140 Body segments, 11–13 Body structure, 11–18, 23 Bone compression, 3 fractures, 55, 59, 60, 140 heterotopic ossification, 63–64 osteoporosis, 59–60, 140 plasticity, 10 remodelling, 13, 52 supported standing, 133–134, 139–140 Bone mineral density (BMD), 59, 133, 139–140 Botulinum toxin injection, 74, 180, 187 Bowel function, 62–63, 134, 238 Bracing, 169–171 Bradykinesia, 78 Brain intrinsic neuromotor apparatus, 29–32

278

INDEX

Brain (contd) plasticity, 10, 28 posture control, 25, 26–27, 28 Brain lesions, effects of, 69–80 assessment, 94–95, 97 management, 79–84, 178–181 Brainstem effect of lesions, 70–77 motor learning, 30 Breath control, hydrotherapy, 221 Buttocks, tilted sitting, 121, 122

C Cardiovascular effects, hydrotherapy, 217–218, 227 Carers, 265–274 as advocates, 98–99 burden of care, 270 consequences of caring, 267 coping strategies, 271 day-to-day experiences, 269–271 healthcare models, 267–268 involvement in management, 239, 241, 266, 267–269, 273 non-compliance, 268–269 number of, 266 passive stretches, 268 relationships with therapists, 271–274 status, 270 support for, 239, 268, 273 time worries, 270–271 training, 239, 268, 269, 273 use of equipment, 268, 270 Carriage driving, 212, 213–214, 213 Carved foam seats, 154 Case conferences, 240 Case studies, 256 Catheter-related infections, 62 Central nervous system impairment effects, 69–80 assessment, 94–95, 97 management, 79–84, 178–181 neuromotor apparatus, 29–32, 33 plasticity, 10, 28 posture control, 25, 26–28 Centre of gravity (CG), 7, 23, 24, 25 Centre of mass (CM), 6, 7 Centre of pressure (CP), 7, 7 Cerebellum effects of lesions, 77, 79, 83 motor learning, 30 see also Ataxia Cerebral cortex effect of lesions, 70–77 motor learning, 30

Cervical flexion custom moulded seating, 157–158, 157, 168 tilted sitting position, 121, 157, 158 Cervical spine, 14, 15 postural analysis, 36 stability, 17 see also Cervical flexion Choreic movements, 78 assessment, 95 custom moulded seating, 153 management, 82–83, 181 Circulatory system adaptation, 52 hydrotherapy effects, 217–218, 227 pressure sores, 58 Clonus, 72 Clothing, 59 Collars, 119, 169 Communication carer–therapist, 272–273 interprofessional, 239–240 Communication skills, 202, 216, 217 Community services, 241 Complementary procedures, 177–193 case history, 192 outcomes, 191–192 pharmacological, 178–181 surgical, 181–191, 192–193 Complete physical management regime, 231–247 aims, 232 assessment, 238 carer involvement, 239, 241, 266, 268–269 case histories, 243–247 constipation, 238 continuing support, 239 counter strategies, 233–234, 234, 243 early intervention, 238, 243 effectiveness, 241 emotional state, 238 handling techniques, 235–236 interprofessional communication, 239–240 leisure activities, 242–243 multidisciplinary approach, 244–245 nutrition, 237–238 passive movement, 234–235 posture control, 233, 268, 269 prescribing, 239 professional education, 240–241 psychological state, 238 psychology of, 241–242 rationale, 232 relatives’ role, 241 resources for, 241

respiratory care, 236–237 underpinning principles, 233 user involvement, 239 as way of life, 239, 243 Compressive force, 2–3, 2 Constipation, 48, 62–63, 238 Constraints, definition, 90 Continence pads, 59 Contractures, 48–49, 48, 51–54 assessment, 93, 97, 98 botulinum toxin, 74 compensatory strategies, 52–53 as consequence of posture, 40–43, 53 custom moulded seating, 152, 158 development, 51–52 minimizing, 53–54, 133, 235 pressure sores, 58 spasticity and, 73 splinting, 53–54, 54, 186 supported standing, 133 surgery, 52, 53, 185–190 Cough reflex, 60 Cushions, 59, 128–129, 129 Custom moulded seating systems, 151–175 accessories, 169 anterior tilt of pelvis, 162–163 body positioning for casting, 158–161 body posture for casting, 156–158 with bracing, 171 case histories, 172–175 casting equipment, 154–155 casting method, 158–161 criteria for use, 151–153 extensor behaviour, 152, 163–164 half moulds, 169 head flexion, 157–158, 168 head support, 168–169 hip flexion, 152–153, 157, 158, 166–168, 172–174 kyphosis, 152, 159, 160, 165 materials used in, 153–154 neck flexion, 157–158, 168 pre-prescription issues, 155–156 windsweeping, 152, 157, 158, 160, 161–162, 175 Cutaneous reflexes, 72

D Data collection, 90–91 Data presentation, 96, 97–98 David Hart Walker, 138, 138 Day centres, 241 Death, as outcome, 89

Decubitus ulcers see Pressure ulcers Deformity assessment, 93 custom moulded seating, 152, 158 Diarrhoea, 62 Disability measures, 93 Disabled people education and support, 239 involvement, 239, 267 perspectives on interventions, 98–99, 242, 246–247 Discomfort, 48, 63 assessment, 94 medication, 178 Drinking, 62, 121 Drug therapies, 53, 178–181, 187 Dynamic loading, bone, 133–134 Dynamic posture, 26–27 Dynamic splints, 137 Dynamic success, 89 Dynamical systems theory, 29 Dysdiadochokinesia, 79 Dysmetria, 79 Dyssynergia, 79 Dystonic movement, 78 custom moulded seating, 153 management, 81, 181

E Eating food consistency, 61 position for swallowing, 60–61, 121 reflux, 61 subcortical lesions, 83–84 in tilted position, 121 Education carers, 239, 268, 269, 273 professionals, 240–241, 257–261 Elastic limits, 9 Elasticity, 8 Emotional stress, 238 carers, 270–271 Equilibrium, 5–6, 6 development of, 26–28 Equinovarus correction, 188–190 Evidence-based healthcare (EBHC), 251–261 background to, 251–253 debates about, 254–255 developing skills for, 257–261 in neuro-therapy context, 255–257 terminology, 253–254 Evidence-based medicine (EBM), 251–253 Exercise regimens, 83, 243 Experiential learning, 27–28, 31

Extensor behaviour, 39, 40, 74–75, 152, 163–164 Extensor spasticity see Extensor behaviour

thoraco-lumbar sacral orthoses, 171

G F Faecal incontinence, 58, 59, 62–63 ‘Failure’, as outcome, 90 Family carers see Carers Feedback mechanism, 26–27 Feedforward mechanism, 27–28, 27 Feeding, 61, 84, 128, 171, 237–238 Flexor withdrawal, 72 Fluid intake, 62 Fluid pressure gradient, 217 Fluid viscosity, 8 Foam seats, 154 Food consistency, 61 swallowing, 60–61, 121 Foot equinovarus correction, 188–190 joint stability, 18 support in sitting, 117, 117, 118, 122–123, 124, 125 support in standing, 135, 137–138 tendo achilles contracture release, 188–190 vulnerability to deformation, 11, 13 Footplates, 117, 122 Forces, 2–3, 2 equilibrium, 5–6, 6 tissue damage, 54, 55–57, 56 see also Gravity Forward leaning posture, 120, 122–123, 122–124, 126–128, 143 as counter strategy, 234 custom moulded seating, 163, 163, 168 Forward leaning straddle posture, 81, 120, 123–128, 125–128, 132, 145, 146–147 Fractures, 55, 59, 60, 140 Freezing, 78 Friction, 2, 3, 57 Functional ability, 22 assessment, 92–93 custom moulded seating, 156, 161, 161 function–posture prioritization, 43, 104, 105 medication and, 181 psychology of management, 242 spinal fusion, 182, 184 support in sitting, 120, 121 supported standing, 134

Gait analysis, 97 Gaiters, 81, 126, 126, 138–139, 139 Gastrostomy feeding, 61, 84, 128, 171, 237–238 Goal Attainment Scaling (GAS) measure, 99 Goal setting, 97, 99, 100 Gravitational field, weight, 6–7 Gravity building postural stability, 104 centre of, 7, 23, 24, 25 effect on posture, 11, 11, 12 function of posture, 23, 28 hydrotherapy and, 219 line of, 7, 7 posture control development, 24, 25 preferred posture and, 49 Ground reaction force, 5

H Haematological effects, hydrotherapy, 218 Halliwick concept, hydrotherapy, 220, 222 Hamstring tenotomy, 186–187, 187, 188, 192 Handicap measures, 93 Handling techniques, 235–236 Harnesses, 104, 125, 126 Head, 11, 12 position for swallowing, 60–61, 121 postural analysis, 34, 35, 36, 37, 39 posture control, 25, 28 support for custom moulded seating, 157–158, 159–160, 168–169 in sitting, 119, 123, 125, 131, 131 in standing, 134 in supine lying, 111 Head control horse riding, 203 hydrotherapy, 221 Headbands, 119, 131, 131, 169 Headrests, 119, 131, 159–160, 168 Healthcare models, 267–268 Heterotopic ossification (HO), 48, 63–64, 64 Hip joint, 15 assisted walking devices, 138

280

INDEX

Hip joint (contd) custom moulded seating, 152–153, 157, 158, 166–168, 172–174 development, 3, 133 dislocation, 15, 49, 51, 184–185 forward leaning posture, 122–123 forward leaning straddle posture, 124 horse riding and, 200, 208–212 knee blocks, 131 postural analysis, 34 preferred posture, 49, 51 spinal fusion and, 182 stability, 17 surgery on, 184–185, 185, 192 Hippotherapy, 203–208, 204–207, 214 Horse riding, 80, 197, 198–214 backriding, 207–208 benefits, 199–202 carriage driving, 212, 213–214 contraindications, 202–203 economics, 214 hippotherapy, 203–208, 204–207, 214 organizations involved in, 198–199, 212, 214 recreational, 212–213, 214 therapeutic, 208–212, 214 Human sandwich, 11, 51, 52 Hydrotherapy, 80, 197, 216–228 access to, 227–228 athetoid/dystonic movement, 81, 227 ballistic movement, 83 buoyancy, 219 case history, 222–226, 223–226 case summaries, 216–217 liquid flow, 219–220 methods, 220–222 organizations involved in, 228 physiological effects, 217–219, 227 published evidence, 227 water density, 219 water temperature, 220 Hypertonicity, 73, 74, 76 horse riding, 200–201 measurement, 76–77 Hypotension, supported standing, 140 Hypotonia, 79, 153, 201

I Impacted bowel, 62 Incontinence, 58, 59, 62–63 Inertia, 2, 7, 8 Infections, 48, 60–62 assessment, 94 respiratory care, 236, 237

Intention tremor, 79, 181 Intervertebral discs, 14, 15 postural analysis, 34, 35 stability, 17 Intervertebral ligaments, 17 Intra-abdominal pressure, 17 Intrathecal baclofen infusion, 179 Intrathecal phenol injection, 179–180, 187

J Joint range assessment, 93, 97, 98 building postural stability, 104 contracture minimization, 53–54 exercises as way of life, 239, 240, 243 horse riding and, 200 see also Tenotomy Joint stability, 4, 16, 17–18 orthoses for, 136–139, 138, 139 Joint tissue adaptation, 52 complete physical management regime, 234–235 heterotopic ossification, 63, 64, 64 vulnerability to damage, 54–55, 63–64 Journal Clubs, 258–259, 261

K Knee ankle foot orthoses (KAFOs), 137–138 Knee blocks/straps support in sitting, 116–117, 116, 118, 131 turning moments, 4, 4 Knee joint, 15–16, 16 custom moulded seating, 157 heterotopic ossification, 64, 64 orthoses, 137, 138, 139 sit to stand wheelchairs, 135, 136 stability, 18 Kyphoscoliosis, postural supports, 109, 126 Kyphosis custom moulded seating, 152, 159, 160, 165 support in sitting, 117–118, 118, 127, 131

L Lateral supports, 130–131 Laxatives, 62

Learning by carers, 269 critical periods, 28, 31, 75 skill acquisition, 26–27, 29–32, 33, 75, 146 Learning groups, EBHC, 259–261 Leg gaiters, 138–139, 139 Leg(s) see Lower limb(s) Leisure activities, 242–243 see also Horse riding; Hydrotherapy Ligaments postural analysis, 33, 34, 35, 36, 37, 38 stabilizing mechanisms, 16, 17, 18 Line of gravity (LG), 7, 7 Linkage system seating, 154–155, 155, 160, 172–174, 173–174 Linkages, body structure, 13–18, 104 Log rolls, 109–110, 110, 142–143 Lower limb(s) building postural stability sitting, 114, 115–117, 125, 126, 127, 128–129, 131–132 standing, 132–141 supine lying, 106, 106 custom moulded seating, 152, 157, 158, 160, 161–162, 175 hinge joints, 15–16 see also Ankle joint; Knee joint postural analysis, 34, 38, 38 preferred posture, 49, 50, 51 stabilizing function, 18 tenotomy, 186–190 vulnerability to deformation, 11, 13 windsweeping, 15, 49, 51 custom moulded seating, 152, 157, 158, 160, 161–162, 162, 175 support in sitting, 114, 127 support in supine lying, 106, 106 surgery, 185 Lumbar spine, 14, 15 postural analysis, 37 stability, 17 thoraco-lumbar sacral orthoses, 170 Lungs hydrotherapy, 218 respiratory care, 236–237 respiratory infections, 60, 61, 236 thoraco-lumbar sacral orthoses, 171 Lycra suits, 81–82, 171 Lying counter strategies, 234, 234, 243 hydrotherapy, 225 postural analysis, 35, 35 posture assessment, 96 preferred posture, 49, 50, 51 respiratory care in, 236, 237 support of posture in, 105–113

Lying (contd) case histories, 142–143, 142–143, 144 contraindications to, 113 indications for, 105 prone lying, 112–113, 112 provision of equipment, 110, 113 rest/sleep positions, 105–110, 144 side lying, 109–110, 110, 142 supine lying, 106–109, 106–109, 110, 111–112, 111–112 therapeutic positions, 110–113 Lynx seating, 154–155, 155, 160, 172–174, 173–174

M Manual handling techniques, 235–236 Mass, 6, 7 Materials behaviour of, 8–11, 9 clothing, 59 custom moulded seating, 153–154 Matrix seating, 154–155, 155, 160, 172, 173 Matter, properties of, 6–8, 7 Mattresses, 59 Maturation theory of learning, 29 Mechanics of movement see Biomechanics Medication, 53, 178–181, 187 Memory, motor learning, 30, 31, 33 Mobility, powered, 242 Moments, 4–5, 4, 5 Momentum, 8 Motion, laws of, 2 Motor learning, 29–32, 29, 30, 33, 75 Movement ‘abnormal’, 32 see also Secondary complications effects of CNS impairment on, 69–80 assessment, 94–95, 97 management, 80–84 see also Complete physical management regime horse riding, 200 mechanics of see Biomechanics ‘normal’, 32–33 passive, 234–235, 235 Movement control, development, 24–25, 25, 26 Multidisciplinary learning groups, 260 Multidisciplinary meetings, 259 Muscle(s) causes of stiffness, 73, 74 see also Hypertonicity; Spasticity

contractures botulinum toxin, 74 compensatory strategies, 52–53 as consequence of posture, 40–43, 53 development, 51–52 minimization, 53 spasticity and, 73 force of contraction, 70–71 horse riding, 200–201 hydrotherapy, 220, 222–226 hypertonicity, 73, 74, 76–77, 76, 200–201 mass, 6 plasticity, 10, 51 postural analysis, 33, 34, 35, 36–37, 38, 40–43 pressure ulcer development, 55–57 pyramidal tract innervation, 71 release phenomena, 71–77 speed of contraction, 71 stabilizing function, 16, 17 structural change with disuse, 71 subcortical lesions, 77, 81 tone, 73–74, 200–201 upper motor neurone syndrome, 70–77, 80 weakness, 70–71, 80, 81

N Neck collars, 119, 169 Neck flexion custom moulded seating, 157–158, 157, 168 tilted sitting position, 121, 157, 158 Nerve tissue, adaptation, 52 Neurological impairment, signs of, 69–84 assessment, 94–95 management, 79–84, 178–181 subcortical lesions, 77–79, 81–84, 95, 181 upper motor neurone syndrome, 70–77, 80, 94–95, 97, 178–180 Neuromotor apparatus, intrinsic, 29–32, 30, 33 Neuronal group selection theory, 29, 29, 75 Neutral-0 method, 93 Newton’s laws of motion, 2 Night-time positioning, 113 sleep positions, 105–110, 144 ‘Normality’, pursuit of, 242 Nutrition, 237–238 pressure sores, 58 subcortical lesions, 78–79, 83–84

O Opisthotonus splinting and, 54, 54 support in lying, 109, 142–143, 142–143 ORLAU parawalker, 138 Orthopaedic clinics, 259 Orthotic devices, 136–139, 138, 139, 169–171 Osteoporosis, 48, 59–60, 140 Outcomes, 88 of complementary procedures, 191–192 definition, 98 disabled person’s perspective, 98–99 measurement, 88, 98–100, 192 range of, 89–90, 89

P Pain, 48, 63 assessment, 94 hydrotherapy, 217 medication, 178 Pain drawings, 94 Parkinsonism, 78, 83, 181 Pascal’s law, 217 Passive stretches, 234–235, 235 carers’ role, 268 causing fractures, 60 clasp knife reactions, 72 contracture minimization, 53, 235 osteoporosis, 60 postoperative, 185 tissue damage and, 55, 64 viscoelasticity of tissues, 8, 55 Pelvic straps supine lying, 111 support in sitting, 81, 114, 162, 169 Pelvis, 11, 12–13 building postural stability, 104, 105 sitting, 114–115, 115, 117, 124, 125, 126 supine lying, 106, 111 custom moulded seating, 152–153, 158, 159, 161–163, 162–163, 169, 172–174 fixation, 182 following hip surgery, 185 hamstring tenotomy and, 187, 188 horse riding and, 200, 203 postural analysis, 33, 34, 35, 36–38, 39 preferred posture, 49, 50 Pendulum test, 77 Perceptual cognitive theory, 29

282

INDEX

Percussion, 237 Percutaneous endoscopic gastrostomy (PEG), 61, 84, 128, 171, 237–238 Pharmacological interventions, 53, 178–181, 187 Phenol, intrathecal, 179–180, 187 Physical activity see Horse riding; Hydrotherapy Physical examination, 91–97 active movement, 92, 96, 97 contractures, 93 deformity, 93 discomfort, 94 functional independence, 92–93 infections, 94 negative factors, 91–95 pain, 94 positive factors, 91–93 positive neurological features, 94–95, 97 postural ability, 91, 92, 96, 97 pressure sores, 93 procedure, 95–97, 96, 97 quality of posture, 92, 96, 97 tissue damage, 93 Plastic flow, 9 Plastic seats, 153–154 Plastic surgery, 190–191 Plasticity, 9–11 Positive neurological features, 71–77, 80, 94–95, 97, 178–181 Postural ability assessment, 91, 92, 96, 97 Postural drainage, 236–237 Postural synergies, 26, 26, 29, 30 Posture, 21–43 ‘abnormal’ strategies, 32 see also Posture, preferred; Secondary complications analysis bending moments, 5 disabled population, 35–43 non-disabled population, 33–35 assessment, 91–92, 96, 96 body structure underlying, 11–18, 23 building stability, 103–147 aims, 103–104 carers’ tasks, 268, 269 case histories, 142–147 equipment prescription, 110, 113, 126, 141, 268 in lying, 105–113, 142–143 objectives, 104 principles of support, 104 process of, 104–105 in sitting, 113–132, 143 in standing, 132–141

compensatory strategies, 32, 33 or spasticity, 74 tissue adaptation, 52–53 see also Posture, analysis; Posture, preferred; Secondary complications complete physical management regime, 233–234, 234, 243, 268 constraints, 24, 32 definition, 21–23 development of control of, 24–29 effects of CNS impairment on, 69–80 assessment, 94–95, 97 management, 80, 81, 82, 83, 83 function, 23–24, 28 horse riding, 199–200, 204, 208–212 hydrotherapy, 223–226 mechanics underlying, 1–11 motor learning, 29–32, 33, 75 ‘normal’ movement, 32–33 preferred, 49–51, 50, 96 quality of, 92, 96, 97 skill acquisition, 26–27, 29–32, 33, 75, 146 Powered mobility, 242 Preferred posture, 49–51, 50, 96 Pressure, centre of, 7, 7 Pressure gradient, water, 217 Pressure mapping, 58, 59 Pressure relief, 59, 153 spinal fusion, 182, 183 Pressure ulcers, 55–59 assessment, 93 case history, 144 management, 58–59, 190–191 plastic surgery, 190–191 predisposing factors, 58 prevention, 58 shear forces, 3, 55–57, 56, 58–59 tissue reperfusion, 57 Problems, definition, 90 Prone lying as counter strategy, 234, 234, 243 respiratory care, 236 support in, 112–113, 112 Prone standing devices, 134, 135 Proprioception, 25, 28 Proprioceptive reflexes, 72 Psychological effects of interventions, 241–242 riding, 201–202 Psychological stress, 238

Q Quality of Life (QOL) measures, 99

R Randomized controlled trials (RCTs), 252, 253, 254–256 Reaction, law of action and, 2 Reclined sitting position, 120, 121 custom moulded seating, 161 Recreational riding, 212–213, 212, 214 Reference function, posture, 24, 28 Reference mechanisms, posture, 25 Reflux, 61, 108, 236 Relatives, caring by see Carers Renal effects, hydrotherapy, 218 Repetition, motor learning, 31, 33 Respiratory care, 236–237 Respiratory effects, hydrotherapy, 218–219 Respiratory infections, 60–61, 61, 94, 236, 237 Rest positions, support in, 105–110 Restraints see Harnesses; Straps Riding see Horse riding Riding for the Disabled Association (RDA), 198, 212, 214 Rigidity, 78, 83, 95 Rivermead Motor Assessment Scale, 93 Rocker boards, 81, 82, 246 Rollators, 139

S SAM (seating and mobility) system, 123–126, 125, 126, 128, 145, 146–147, 199 Scoliosis custom moulded seating, 152, 153, 172 development, 3, 38 horse riding, 208–212, 209–211 preferred posture, 49–51 spinal fusion, 181–184 support in sitting, 127, 131 thoraco-lumbar sacral orthoses, 170 Seats and seating systems building postural stability, 114, 114, 115 accessories, 128–131 forward lean straddle posture, 123–128, 132, 145, 146–147 forward leaning posture, 122–123 guidelines for support, 131–132 horse riding and, 199 tilt orientation, 120–121, 120

Seats and seating systems (contd) custom moulded see Custom moulded seating systems Secondary complications, 47–65 assessment, 93–95 constipation, 48, 62–63 contractures see Contractures definition, 47 discomfort, 48, 63, 94 heterotopic ossification, 48, 63–64, 64 infections, 48, 60–62, 94 osteoporosis, 48, 59–60, 140 overstretched tissues, 49 pain, 48, 63, 94 tissue adaptation, 48–54, 48, 50, 52 tissue damage, 48, 54–59 see also Pressure ulcers see also Complete physical management regime Self-confidence, 202, 216 Sensory impairment, pressure sores, 58 Sensory input horse riding, 201 posture control, 25, 28 preferred posture, 51 tilted sitting position, 122, 157, 158 Service provision, 241 Shear forces, 2, 3 pressure ulcers, 3, 55–57, 56, 58–59 Shoulder girdle body structure, 11, 13 custom moulded seating, 159 support in sitting, 117–118, 125, 126, 126 Shoulder joint, 15 forward leaning posture, 123 stability, 17 Shoulder pain, 54 Side lying as counter strategy, 234, 234 respiratory care, 236 support of posture in, 109–110, 110, 142 Sit to stand wheelchairs, 134, 135–136, 137 Sitting biomechanics, 4–5, 5 counter strategies, 234, 243 horse riding, 199–200, 208 hydrotherapy, 223–224 lumbar disc stress, 15 postural analysis, 33–34, 34, 36–39, 36–40 posture assessment, 95, 96, 97 preferred posture, 49 respiratory care in, 236, 237

support of posture in, 113–132 accessories, 128–131 case histories, 144–146, 146–147 erect position, 119–120, 121, 132 forward leaning position, 120, 122–123, 122–124, 126–128, 143 forward leaning straddle position, 81, 120, 123–128, 132, 145, 146–147 guidelines, 131–132 reclined position, 120, 121, 161 step-by-step approach, 114–119 thoraco-lumbar sacral orthoses, 170 tilted orientation, 120–122, 123, 124, 158, 161, 171–172 see also Custom moulded seating systems Skill acquisition, 26–27, 29–32, 33, 75, 146 carers, 269 horse riding, 202 Sleep positions, 105–110, 144 Slide sheets, 3, 57 SMART criteria, 99 Social benefits hydrotherapy, 216 riding, 201–202 Spasm, 71–72, 74–75 management, 80 medication, 178–180 side lying, 110 sitting, 128, 129 supine lying, 106 Spasticity, 73, 74–75 assessment, 94–95 management, 80 hamstring tenotomy, 187, 188 hydrotherapy, 217 medication, 178–180 supine lying, 106 measurement, 76–77, 95 Spatial awareness, 201 Spinal cord lesions, effects, 70–77 Spine, 14 bracing, 169–171 curvature assessment, 93, 97, 97 fixation, 181–184, 183 horse riding and, 200 movements of, 14–15 postural analysis, 33, 34, 35, 36, 37, 38 preferred posture, 49, 50, 51 stability, 17 Splinting, 53–54, 80, 186 Stability biomechanics, 4, 5–6, 6 joint, 4

postural analysis, 33–43 associated reactions, 74, 75 body structure, 11, 13–16, 23 building, 103–147 development, 24, 26–28 mechanisms of, 16–18, 16 spasticity or adaptation, 74 Standing assessment, 97 hydrotherapy, 224 osteoporosis and, 60, 140 postural analysis, 34–35, 34, 40–43, 40–44 support of posture in, 132–141 activity during, 140 benefit–effort balance, 140–141 counter strategies, 234 fractures, 140 induced hypotension, 140 orthotic devices, 136–139, 138, 139 rationale, 133–134 therapeutic devices, 134–136, 134, 136, 244, 246–247 time required, 139–140 weight bearing in, 140, 141 Standing frames, 134, 135, 136, 244, 246–247 Static posture, 26 Static success, 89–90, 243 Stereotactic thalamotomy, 181 Sticks, 139 Stigmatization, 202 Straddle seating, 123–128, 125–128, 132, 145, 146–147 Strain, 8–9, 9 Straps anterior tilt of pelvis, 162 choreic movement, 82 postural stability, 104 in sitting, 81, 114, 116–117, 116, 118, 131 in supine lying, 108, 109, 111 Stress, 8 Stress/strain relationship, 9, 9 Subcortical lesions, effects of, 77–79 assessment, 95 management, 81–84, 181 Supine lying hydrotherapy, 225 support in, 106–109, 106–109, 110 therapeutic, 111–112, 111–112 Surgical interventions, 52, 53, 181–191, 192–193 Swallowing, 60–61, 121, 236 Swimming see Hydrotherapy Synergies, postural, 26, 26, 29, 30

284

INDEX

T T rolls, 106–108, 106–109 Tears, soft tissue, 54–55 Temperature, pressure sores, 58 Tendo achilles (TA) tenotomy/tenoplasty, 188–190 Tendon jerks, exaggerated, 72, 73 Tenotomy, 184, 185–190, 192 Tensile force, 2, 2 Therapeutic leisure activities see Horse riding; Hydrotherapy Therapeutic lying positions, 110–113 Therapeutic riding, 208–212, 214 Therapeutic standing devices, 134–136, 134, 136 Thermoplastic seats, 153–154 Thoracic spine, 15 Thoraco-lumbar sacral orthoses (TLSOs), 169–171 Thorax custom moulded seating, 159, 159, 160, 172–174 respiratory infections, 60, 61 support in sitting, 117–118, 118, 126, 130 vulnerability to deformation, 11, 12, 13 Tilt tables, 134–135, 134, 140, 244 Tilted sitting position, 120–122, 120, 123, 124 custom moulded seating, 157, 158, 161 respiratory care, 236 thoraco-lumbar sacral orthoses, 170–171 Tissue adaptation, 48–54, 48 compensatory balance strategies, 52–53 development, 51–52 human sandwich, 51, 52 minimizing, 53–54, 104, 133 preferred posture, 49–51, 50 spinal fusion, 182–183 subcortical lesions, 81, 95 support in sitting and, 114, 115 upper motor neurone syndrome, 71, 74, 80 Tissue damage, 48, 54–59 assessment, 93

building postural stability, 104 see also Pressure ulcers Torques see Moments Torsion, 2, 3 Touch, sense of, 28 Training, carers, 239, 268, 269, 273 Trays, 129, 130 Tremor cerebellar ataxia, 79, 83 custom moulded seating, 153 medication, 181 Parkinsonism, 78 Trunk alignment, forward leaning, 124, 125 Trunk balance training, 81, 82, 246 Trunk bending, preferred posture, 49–51, 50 Trunk control, horse riding, 203, 204 Trunk support, custom moulded seating, 152, 153, 159, 169 Trunk symmetry assessment, 93, 93, 96, 156–157 Turning moments, 4, 4 24-hour management see Complete physical management regime

U Upper limb(s) body structure, 11, 13 custom moulded seating, 169 gaiters, 81, 126 postural analysis, 34, 37, 38, 38 preferred posture, 49–51, 50 support in sitting, 118–119, 125, 126, 129–130 support in standing, 134, 140 Upper motor neurone syndrome (UMNS), 70–77 management, 80, 178–180 muscle weakness, 70–71, 80 negative features, 70–71, 80 positive features, 71–77, 80, 94–95, 97, 178–180 release phenomena, 71 Urinary incontinence, 58, 59, 62–63 Urinary tract infections, 61–62, 94 Urine retention, 61–62

V Vacuum suction, lung secretions, 237 Vertebrae, stability, 17 Vertebral bodies, 14, 17, 33 Vertebral ligaments, 17 Vestibular system, 28, 51 Viscoelasticity, 8, 55 Viscosity, 8 Vision custom moulded seating and, 157, 158, 159, 168 posture control, 25, 28 preferred posture, 51 tilted sitting position, 122, 157, 158 Visual analogue scales (VAS), 94

W Walking assessment, 97 horse riding and, 200 hydrotherapy, 221–222, 224–225, 226 leg gaiters, 139 Walking devices, 138, 138 Walking frames, 139 Water as therapy see Hydrotherapy Weight, 6–7 Weight bearing hydrotherapy, 222 in supported standing, 140, 141 Weight-bearing areas, sitting, 104 Wheelchair services, 272 Wheelchairs sit to stand, 134, 135–136, 137 support in sitting, 123, 124, 144 Windsweeping, 15, 49, 51 custom moulded seating, 152, 157, 158, 160, 161–162, 162, 175 support in sitting, 114, 127 support in supine lying, 106, 106 surgery, 185 Wing beating (ballistic movements), 78–79, 83

Y Yield points, 9

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