Family Psychoeducation for Serious Mental Illness (Evidence-Based Practices)

f a m i l y p s y ch o ed u ca t i o n fo r s e rio u s m e n t a l i lln e s s

EV ID ENC E- B ASED P R AC TIC ES SER IES

s eries ed it o rs : David E. Biegel, Ph.D. Elizabeth M. Tracy, Ph.D. Mandel School of Applied Social Sciences, Case Western Reserve University

Family Psychoeducation for Serious Mental Illness Harriet P. Lefley

The Evidence-Based Practices Series is published in collaboration with the Mandel School of Applied Social Sciences at Case Western Reserve University.

FA M I L Y P S YC H O E D U C A T I O N F O R S E R IO U S ME N TA L I L L NESS

Harriet P. Lefley

1 2009

1 Oxford University Press, Inc., publishes works that further Oxford University's objective of excellence in research, scholarship, and education. oxford new york Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto with offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam Copyright © 2009 by Oxford University Press, Inc. Published by Oxford University Press, Inc. 198 Madison Avenue, New York, New York 10016 www.oup.com Oxford is a registered trademark of Oxford University Press All rights reserved. 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 Oxford University Press. Library of Congress Cataloging-in-Publication Data Lefley, Harriet P. Family psychoeducation for serious mental illness / Harriet P. Lefley. p. cm.—(Evidence-based practices) Includes bibliographical references and index. ISBN 978-0-19-534049-5 1. Mental illness—Treatment. 2. Family psychotherapy. 3. Evidence-based psychiatry. I. Title. RC480.L435 2009 616.89'156--dc22 2008046056 1 3 5 7 9 8 6 4 2 Printed in the United States of America on acid-free paper

This book is dedicated to consumers with serious mental illness, and to the families and friends who love them.

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P RE F A C E

When I was asked to contribute a book to a series on evidence-based practices in mental health treatment, I could only claim some degree of expertise in family psychoeducation for schizophrenia and other serious mental disorders. However, this is not my personal area of research. I must rely on the work of the greats in this field, the pioneers whose work I have noted in the Acknowledgments section. Although my research has been in other areas of mental illness, family psychoeducation and family education have been a major source of interest to me for at least a quarter of a century. This book focuses on family psychoeducation, which targets effects of family interventions on the persons with mental illness. However, I am including a substantial section on family education, which targets the needs of their families for coping skills. (Further distinctions between these two concepts will be carefully discussed in Chapter 2.) Mental illness has a huge impact on families, and alleviating psychological distress in caregivers is a legitimate concern for mental-health professionals. Several important books have been written about various models of family psychoeducation and numerous overviews of the research can be found in the literature. To the best of my knowledge, most of these are cited here and hopefully integrated into a larger picture of what is actually going on in the field today. To this end, I have also included descriptions of programs that are not readily available in scientific journals. This book covers a wide range of models, from randomized controlled studies to ongoing brief educational courses, with and without evaluation data. The selection is based primarily on family psychoeducation programs with rigorous research designs and outcome data, those that exemplify evidencebased practice. However, briefer family education models are also included, contingent on available research findings, but also on a program's longevity, updated

VII

VIII

PREFACE

manualization, and number of people served. I have tried to give as broad and inclusive a picture as possible of what is actually offered to families of individuals with serious mental illness today, and apologize for any inadvertent omissions. For practitioners wishing to implement evidence-based family psychoeducation, with full fidelity to the research model, the most valuable resource is the family psychoeducation toolkit developed primarily by Dr. William McFarlane and Dr. Lisa Dixon, under the auspices of the Substance Abuse and Mental Health Services Administration (SAMHSA). The toolkit is available online and in manual form (see Department of Health and Human Services, 2003, and www.samhsa.gov). During the last quarter century, family psychoeducation has proved efficacious in significantly deterring relapse and re-hospitalization in patients with schizophrenia, bipolar disorder, and various other diagnostic categories, and in many cases enhancing families’ well-being. Although most of the research has focused on schizophrenia, this intervention has proved beneficial across a range of severe psychiatric disorders. But evidence-based family psychoeducation has reached at best a few thousand families. National Alliance on Mental Illness's (NAMI) Family-to-Family has been taught to over 125,000 families. Some empirical data are now available for the effectiveness of this program, as well as for Journey of Hope. Because there have been numerous other attempts to provide family education, I decided to include a description of some of these other models, with whatever data have become available on their outcomes. These may be helpful to clinicians who wish to implement their own programs, but lack the resources available in well-funded research projects. For the past quarter century I have also been engaged in leading a psychoeducational support group for families of people with severe mental illness at one of the largest psychiatric centers in the southeast. This is an open-ended group, a free service available to the public as well as to families of our patients. Families come and go according to need. Some come only during a crisis. Others have come consistently for ten or more years. Over the years thousands of families have told me their stories. When I speak about family experiences and family burden in the forthcoming pages, much of what I say will be derived from stress theory and from the copious research on family burden. But research data provide a picture that is only as comprehensive as the questions asked and answered. Few of the instruments that measure stressful life events or family burden deal with patients’ access to hospitalization, legal constraints, or other aspects of mental-health systems that impede timely treatment and cause frustration and grief to families. Nor do the research instruments mention the effects of incorrect theories and ineffective treatments on the psychological well-being of families. Distancing behaviors and failure to communicate on the part of mental-health staff are serious aspects of family burden, but they are not found in the measurement scales. Many issues that arise in

PREFACE

IX

support-group discussions regarding malfunctioning mental-health systems, which manifestly contribute to family disorder, are not found in the literature. So, some of the observations in this book will be based on my years of listening to families, as well as on citations from theory and research. In the main, I have tried to present a comprehensive picture of what is currently available to educate caregivers of people with serious mental illness, to distinguish the aims of family psychoeducation and family education, and to present an argument for the usefulness of both. At the end, I speak of the potential for introducing family psychoeducation as standardized treatment in mental-health systems, and what we can expect for the future. Clinicians and clinicians-in-training are well aware of the importance of social context for recovery from mental illness. In current mental-health systems, not only service providers, but other patients—consumers in recovery—are fulfilling a long-needed, tremendously important role in helping people recognize their strengths and lead satisfying lives. But for many consumers, families may be even more critical, because caring, knowledgeable family members are lifetime support systems. It is clear that they need information and understanding from the clinicians who treat their loved ones. I hope this book fulfills its aim of educating mental-health professionals on the importance of educating families, friends, and all others concerned with the welfare of persons with serious mental illness.

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A C KN O W L E D G ME N TS

Much of this book is based on the pioneering work of Julian Leff, William McFarlane, Carol Anderson, and the late great innovators Ian Falloon, Gerald Hogarty, and Michael Goldstein. The research contributions of Robert Liberman, Kim Mueser, David Miklowitz, Shirley Glynn, Jan Randolph, and Nina Schooler have provided extremely valuable sources. In the United Kingdom, there are seminal research findings from Liz Kuipers, Nicholas Tarrier, Christine Barrowclough, Paul Bebbington, Max Birchwood, Graine Fadden, Christine Vaughn, and Dominic Lam. I might also add the contributions of Jose Canive, Steve Lopez, and Amy Weisman, and anthropologists Janis Jenkins and Kim Hopper, to the issue of cultural diversity. The writings of Thomas McGlashan and Patrick McGorry have edified me on the early intervention research and its possibilities. Mary Fristad at Ohio University has probably done the most important work with children, applying family psychoeducation to pediatric mood disorders. Although I have never met them, I have found extremely valuable the research of J. Bauml and G. Pitschel-Walz in Germany, M.J. Masanet and I. Montero in Spain, L. Magliano and A. Fiorillo in Italy, and the studies published by M.Phillips, M. Xiang, W.Xiong, and M. Zhang and their colleagues in China. The Optimal Treatment Project team of Ian Falloon, Rita Roncone, and their many colleagues in Europe and elsewhere, continues to add immeasurably to our knowledge. And Bill McFarlane continues to expand his demonstrably effective multi-family model into ever-widening areas of research and practice. Professor Lisa Dixon, University of Maryland, has done invaluable work on many levels. Her collaboration with Anthony Lehman on the Schizophrenia Patient Outcomes Research Team (PORT) study first publicized the importance of family psychoeducation as a treatment modality for schizophrenia (see Introduction).

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ACKNOWLEDGMENTS

In her continuing overviews of family psychoeducation and her controlled studies of the Family-to-Family Program of the NAMI, Lisa Dixon has added immeasurably to our knowledge of what works for people with mental illness and their families. Susan Pickett-Schenk, University of Illinois, has also added to our knowledge of the effects of family education and Judith Cook to our knowledge of family burden. Phyllis Solomon, University of Pennsylvania, and her colleague Jeffrey Draine have been major, prolific researchers of family support groups and family education. Edie Mannion and Marilyn Meisel of the Technical Assistance Center of Southeastern Pennsylvania, and Robert Coursey, University of Maryland, were early developers of family education and in their collaborations with Phyllis Solomon produced important research findings on its effects. Charles Rapp at the University of Kansas School of Social Welfare and Mental Health Research Laboratory helped develop curriculum and training materials on psychoeducational approaches that could be used by family support groups (see Wintersteen, 1987, in Appendix) also Christopher Amenson of Pacific Clinics Institute. There are many, many others; I wish I could acknowledge them all. I have known and communicated with most of the researchers mentioned at some point in my life, and have been greatly enriched by their insights. Some have remained long-time personal friends. And now I want to express my deepest appreciation to some very special people with whom I have collaborated for almost three decades. Professors Agnes Hatfield, Dale Johnson, Mona Wasow, and Diane Marsh, with whom I have co-authored several books and/or articles, have been treasured friends and colleagues throughout the years. Agnes Hatfield, professor emerita, University of Maryland and an early president of NAMI, must be hailed as a pioneer in conceptualizing and writing about the family experience of mental illness in terms of stress, coping, and adaptation theory. Her early work in family education was later specialized in psychoeducational work with elderly caregivers. Dale Johnson, professor emeritus, University of Houston, also a former NAMI president, trained generations of clinical psychologists and expanded his interest in culture, particularly American Indian cultures, into an international perspective as President of the World Fellowship for Schizophrenia and Allied Disorders. Professor Mona Wasow, University of Wisconsin, has trained generations of clinical social workers to facilitate rehabilitation and recovery of persons with severe mental illness. Professor Diane Marsh, University of Pittsburgh, has influenced a generation of psychologists to become more invested in serving persons with serious mental illness. Our friendships and collaborations as NAMI members have been invaluable in conveying the needs of family caregivers to new generations of clinicians. Dr. Joyce Burland, Director, NAMI Education, Training, and Peer Support Center, has been an invaluable source of information on NAMI educational activities and also a valued friend and colleague throughout the years. Nursing educators Mary Moller and the late Victoria Conn, and psychologists Kayla Bernheim

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XIII

and Cynthia Bisbee, were early pioneers in developing educational modules for families. Psychologist Fred Frese and Dr. Penny Frese were pioneers in developing psychoeducational modules for schoolchildren. I am also grateful to Dr. David Biegel of Case Western Reserve University for his continuing interest in families, minorities, and evidence-based practice. I want to thank all these people for having educated me in the writing of this book. And I am grateful to many of them for having been and/or continuing to be my friends. Most important, their work has had an impact on the field and, in many cases, changed the course of treatment for major psychiatric disorders. Their research has demonstrably helped people with major mental illnesses, and probably every one of them has enriched the coping skills of families.

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CONTENTS

1

i nt ro du ct i on

2

f am i l y i n t e rv e n t io ns in majo r ment al il l n e ss Models and Commonalities

3

f am i l i e s , s ch i z o phrenia, and o t her majo r disor de r s Historical Background

4

the ore t i c a l p remis es and res earc h o verv ie ws The Evidence for Family Psychoeducation

5

mo de l re s e a r c h pro grams Family Psychoeducation

6

ear l y i n t e r v e n t io ns 58 Prodromal, Children, and Adolescents

7

d i v e rs e di a g n os es and s pec ial po pul at io n s

68

8

i nt e r n a t i on a l a nd c ro s s -c ult ural s t ud ies Uniformities and Variations

80

9

f am i l y e du c a t i on

1 8

28

35

96

10 tr a i n i n g a n d t raining is s ues 11 i mp l e m e n t a t i on in s ervic es

106 112

12 un re s ol v e d i s s ues in family ps yc ho ed uc ation A Critical Assessment

122

13 f ut u re t r e n ds in famil y invo lvement in tr e atme n t Appendix

141

15

References

149

XV

Indexes 167

129

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f a m i l y p s y ch o ed u ca t i o n fo r s e rio u s m e n t a l i lln e s s

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1 I N T RO D U C TI O N

This book focuses on an evidence-based approach to working with families of persons with serious mental illness (SMI). Division 12 (Clinical Psychology) of the American Psychological Association has defined evidence-based treatments (EBTs) in terms of the following criteria: (1) at least two good between-group design experiments must demonstrate efficacy in one or more of the following ways: superiority to pill or psychotherapy, placebo, or to other treatment; equivalence to already established treatment with adequate sample sizes; (2) experiments must be conducted with treatment manuals or equivalent clear description of treatment; (3) characteristics of samples must be specified; and (4) effects must be demonstrated by at least two different investigators or teams (see Chambless and Hollon, 1998). Kazdin (2008) has distinguished EBT from evidence-based practice (EBP), which “refers to clinical practice that is informed by evidence about interventions, clinical expertise, and patient needs, values, and preferences and their integration in decision making about individual care” (p. 147). In this book, we use the broader concept of EBP in two domains: as an empirically-supported intervention that includes family support as an integral component of treatment for SMI, and as a support for families in coping with its disruptive effects. What is meant by SMI? Coursey, Alford, and Safarjan (1997) noted that this term replaced “chronic mental illness” during the 1990s because of the demoralizing impact of the word “chronic” on clients. Both terms characterize individuals who have severe and persistent disabilities that result from a psychiatric disorder. “The term severe was defined as functional limitations in activities for daily living, social interaction, concentration, and adaptation to change in the environment. Persistent was defined as likely to last for 12 months. The term serious mental illness

1

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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS

is usually reserved for adults, whereas serious emotional disturbance is the broad title for the equivalent in children” (p. 205). Serious mental illness has been defined by the Center for Mental Health Services (CMHS) in accordance with Public Law (P.L.) 102–321, which established a block grant for states to fund community mental health services for adults with SMI. The law required an operational definition of SMI in order to estimate prevalence. In such an estimate, Epstein, Barker, Vorburger, and Murtha (2004, p.6), note that “The definition of SMI stipulated in P.L. 102–321 requires the person to have at least one 12-month disorder, other than a substance-use disorder, that met DSM-IV criteria (American Psychiatric Association, 1994) and to have ‘serious impairment’ . . . equivalent to a Global Assessment of Functioning (GAF) score of less than 60 (Endicott, Spitzer, Fliess, and Cohen, 1976).” In the CMHS definition, functional impairment was more precisely defined as difficulties that substantially interfere with or limit role functioning in one or more major life activities, including basic daily living skills (e.g., eating, bathing, dressing) or instrumental living skills such as managing money, maintaining a household, taking prescribed medication, or functioning in social, family, and vocational/educational contexts. Mental disorders differ in diagnosis, type, and intensity of symptomatic behaviors, levels of functional impairment, and duration of disability. Diagnostically, persons with schizophrenia, major affective disorders, and psychotic states are considered to have an SMI. Adults with major anxiety disorders and other diagnoses may also be characterized as having an SMI if they have prolonged levels of functional impairment that preclude leading fully productive lives. Persons with repeated needs for crisis intervention or hospitalization are considered to have an SMI. In the population-based National Comorbidity Survey, Kessler et al. (2006) attempted to assess the number of persons with SMI in the United States. Respondents with 12-month mental disorders were defined as having SMI if they had at least one of the following: 12-month bipolar 1 disorder or non-affective psychosis (NAP). NAP included schizophrenia, schizophreniform disorder, schizoaffective disorder, delusional disorder, and psychosis not otherwise specified; a 12-month suicide attempt; at least two areas of role functioning with self-described “severe” role impairment on the Sheehan Disability Scales (Leon, Olfson, Portera, Farber, and Sheehan, 1997); and the GAF score previously cited. Government publications have indicated that “In 2002, there were 17.5 million adults aged 18 or older with SMI during the 12 months prior to being interviewed. This represents 8.3 percent of all adults in the United States”(Epstein, Barker, Vorburger, and Murtha, 2004, p. 15). The schizophrenias and major affective disorders have comprised 55% of hospital admissions and 65% of inpatients under care (Lefley, 1996). Most of the research on family psychoeducation (FPE) has been conducted with families of persons

INTRODUCTION

3

with these diagnoses, and FPE is now a well-established psychosocial treatment for schizophrenia. In recent years, however, FPE has been extended to other diagnoses and these are described in subsequent chapters. In assessing prognosis for major psychiatric disorders, both clinical and community prevalence studies demonstrate the importance of family and caring friends for positive outcomes (Evert et al., 2003; Harvey et al., 2007). Family members in particular are the people who knew the patient in his or her pre-morbid state and have shared the confusions, disruptions, and emotional ravages of the illness. In most cases, a caring family continues to be the most stable resource for patients throughout a lifetime of stressors, shifting resources, and changing clinical services. Estimates of the number of adults with mental illness living with their families vary between 50% and 84% (Marshall and Solomon, 2004). Research indicates that 75% of persons with schizophrenia have some ongoing contact with family members (Lehman and Steinwachs, 1998). Even when they do not live with the patient, concerned family members find services for their ill relatives, provide social, financial, and emotional support, and serve as a last resort when the system fails (Brekke and Mathiesen, 1999; Clark and Drake, 1993). But to be optimally beneficial, family and other caregivers need education about the disorders, some knowledge of illness management techniques, and personal support. FPE is a contemporary, very powerful addition to the armamentarium of beneficial psychological interventions. In contrast to many models of individual and family therapy, FPE is evidence-based, with research-based efficacy for reducing relapse and hospitalization, reducing symptoms, and increasing employability of persons with severe and persistent mental illness. In achieving these results, a meta-analysis of the research has demonstrated that psychoeducation for client alone is not as effective as when families are included (Lincoln, Wilhelm, and Nestoriuc, 2007). Although the focus is on client outcome, psychoeducation has also proved effective in reducing family burden and improving well-being of those struggling to cope with the mental illness of a loved one. FPE also expands the definition of that which is considered therapeutic. It is an intervention whose principal beneficiary is another. Although psychoeducation helps allay a host of problems, it is not considered treatment for the principals involved. Julian Leff, internationally known as a research psychiatrist, family therapist, and founder of FPE, points out that when dealing with schizophrenia or other SMI, “I do not refer to family work as therapy since the family members are not considered to be in need of treatment. Rather they need to be seen as allies in the struggle to help the ill person recover from schizophrenia and fulfill their potential” (Leff, 2005, p.3). This firmly places the family in a context very different from that which initially informed family therapy for schizophrenia (see Chapter 3), and one that is unfortunately still widely conceptualized in our field. The family is viewed not as a

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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS

contributor to psychopathology, but as ongoing support system for mental disorders that are increasingly viewed as biogenic. Among all the mental health professions, counseling or psychotherapy models have typically focused on the amelioration of symptoms or distress of individuals, couples, or family systems. Whether through insight into childhood conflicts, recognition of thought distortions, countering emotional dysregulation, or comprehending dysfunctional interpersonal relationships, we have targeted changes in thought, behavior, and family systems to deal with life conflicts. This new technique demonstrates the efficacy of ordinary education. FPE is so titled because it transcends simple information-gathering to deal with the psychological issues that inevitably accompany mental illness in the family. But the basis is state-of-the-art education—simply improving understanding through learning what is known and not known about an illness and how to assess and cope with its manifestations. This is true for both clients and for those who love and support them. With de-institutionalization—the historical act of emptying large mental institutions—numerous people with SMI were discharged to families who were ill-prepared to cope with these new additions to their households. Some had infrequent contact with their ill relatives due to institutional policies that tended to discourage visitations from families and from the outside world in general (Rothman, 1971; Terkelsen, 1990). Others had maintained contact but had little knowledge of mental illness and how to cope with its symptoms. Many accepted this task reluctantly, having established other commitments and priorities. Some families had totally unrealistic expectations and were unable to handle psychotic behavior or maintain household stability. And people who had spent long years in institutional care were catapulted into unfamiliar living arrangements, with their own anxieties about this change in their lives. Worried caregivers, uncertain of their roles, could only exacerbate terrors and paranoid ideation. The need for caregiver preparation was immediately apparent, but most mental health systems offered nothing to families in the way of training. A few progressive psychiatrists had started early work with families. They understand the importance of involving their patients’ support systems, as well as satisfying family members’ needs for help in managing the illness and alleviating their own distress. Psychiatrist Richard Lamb, University of Southern California, Los Angeles, was an early mentor to the Parents of Adult Schizophrenics of San Mateo County, CA (Lamb and Oliphant, 1978). These parents subsequently became core organizers of The National Alliance on Mental Illness (NAMI). Psychiatrist Robert Liberman began involving families in treatment as early as 1966, as a Harvard resident at Massachusetts Mental Health Center (Liberman, 1970). In 1973, he introduced psychoeducational classes for the families of patients who were attending the Oxnard, CA Community Mental Health Center, when he was the sole psychiatrist for 500 patients who came from impoverished, often Latino immigrant backgrounds.

INTRODUCTION

5

“After a 45-minute lecture-discussion, I organized the families and their patients in small groups with clinicians from the Center for more focused problem-solving and collaboration on a wide variety of problems, goals, and stressors” (Liberman, King, and DeRisi, 1976; R.P. Liberman, personal communication, April 29, 2008). Some mental health professionals who were also family members began to develop training manuals for family education (e.g., Bisbee, 1999; Hatfield, 1990). Shortly after its organization in 1979, NAMI (then the National Alliance for the Mentally Ill) began to administer family education in the major psychiatric disorders, as did a few chapters of the National Mental Health Association (now Mental Health America or MHA). In fact, the last quarter century has seen the emergence of many different models of helping families cope with the dilemmas of major mental illness. This book tries to present a global picture of these various attempts. We focus on evidence-based models of FPE, but also present data on a few selected, mostly manualized examples of the large number of efforts to educate families in their new roles as community caregivers.

THE SCOPE OF FAMILY CAREGIVING With the emptying of hospital beds for long-term care, families have now become the major caregivers and lifetime support systems of persons with major psychiatric disorders throughout the world (Warner, 2000). In China, over 90% live with their families (Xiong et al., 1994). In countries with more community resources such as Italy, where the last long-term hospital patients were discharged in 2000, from 70% to 84% of persons with schizophrenia now live in the family home (Warner, 2000). In the United States, ethnic minorities are more likely to live with their mentally ill relatives. In a number of studies the figure for Latinos, for example, ranged from 75% to 85% co-residence vis a vis two-thirds for African-Americans and about 40% for white-Americans (Lefley, 1996). Even when patients live in assisted living facilities or mental health center housing, there is ongoing contact and families continue to be a significant source of financial, emotional, and social support (Brekke and Mathiesen, 1999). It is clear that family education and support are becoming increasingly important to facilitate patients’ improvement and to ease caregiver burden. Moreover, FPE has proved to be a major tool for improving patients’ prognosis. It is now acknowledged as one of the major EBPs in the treatment of schizophrenia and other major disorders (Dixon et al., 2001).

FAMILY PSYCHOEDUCATION AS EVIDENCE-BASED PRACTICE In the early 1990s, The Agency for Health Care Policy and Research and the National Institute of Mental Health funded The Schizophrenia Patient Outcomes

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FAMILY PSYCHOEDUCATION FOR SERIOUS MENTAL ILLNESS

Research Team (PORT) project to develop and disseminate recommendations for the treatment of schizophrenia based on existing scientific evidence. PORT developed 30 recommendations in several categories: pharmacotherapies and electroconvulsive therapy; psychological treatments (individual and group psychotherapies for patients): family treatments; vocational rehabilitation; and service system improvements. Among the family treatments, only FPE was recommended. This intervention was evaluated at the highest level of evidence from a host of research overviews (Lehman and Steinwachs, 1998). The PORT recommendations for family treatments were as follows: Recommendation 24. “Patients who have ongoing contact with their families should be offered a family psychosocial intervention that spans at least nine months and provides a combination of education about the illness, family support, crisis intervention, and problem-solving skills training. Such interventions should also be offered to non-family caregivers . . .”. Recommendation 25. “Family interventions should not be restricted to patients whose families are identified as having high levels of “expressed emotion” (criticism, hostility, over-involvement).. . . Studies have found that these interventions offer substantial benefits to patients and families regardless of the level of expressed emotion. Recommendation 26. “Family therapies based on the premise that family dysfunction is the etiology of the patient’s schizophrenic disorder should not be used. Rationale: Research has failed to substantiate hypothesized causal links between family dysfunction and the etiology of schizophrenia . . . . The presumption that family interaction caused schizophrenia, especially as an alternative to biological risk factors, has led to serious disruption in clinician/family trust without any evidence of therapeutic effectiveness. The repudiation of the theoretical premise of these therapies, the lack of empirical studies, and the strong clinical opinion raising concerns about the potential harm caused by these approaches lead to this recommendation” (Lehman and Steinwachs, 1998, p. 8). As is evidenced in the PORT, although our focus is on educating patients’ families and other caregivers, FPE clearly must be incorporated in a multi-modal approach to treatment. But many researchers, particularly in Europe, view FPE as an essential component. Based on their research findings, Bauml, Frobose, Kraemer, Rentrop, and Pitschel-Walz (2006) state categorically that “Psychoeducation, in the form of an obligatory-exercise program, should be made available to all patients suffering from a schizophrenic disorder and their families” (p. S1). In this brief introduction, I have tried to define the basic concepts used in this book. EBTs are operationally defined in terms of their research criteria and outcomes. EBP refers to the application of these empirically-supported treatment approaches in work with individual clients, including the training of staff.

INTRODUCTION

7

The broader term, EBP, is used throughout this book because FPE covers two practice domains. It integrates family support in the treatment of SMI, and it helps families cope with its disruptive effects. “Serious mental illness” is also defined in terms of diagnosis, severity, and persistence, along with prevalence data from national population-based studies. This chapter then goes on to indicate the scope of families’ involvement with persons with SMI, both in the extent of residential caregiving and the degree of social support. Because of prior institutional policies of distancing patients from family members, de-institutionalization had discharged many patients to caregivers who had little knowledge of how to care for their relatives with mental illness, had unrealistic expectations, and did not know how to cope with symptomatic behaviors. Although the need for caregiver education was immediately apparent, most mental health systems still continued to offer nothing to families in the way of information or skills training. To fill this need, family education programs were largely developed outside of mental health systems, by organizations such as National Alliance on Mental Illness (NAMI) and Mental Health America (MHA). Concomitantly, new treatments, focusing on reducing symptoms and recidivism in patients with schizophrenia, began to be developed. Among these was FPE. The chapter ends with strong recommendations to implement FPE in mental health systems by Patient Outcomes Research Team (PORT) in the United States, and as “obligatory” treatment by European researchers as well. Forthcoming chapters describe various models of family interventions and the historical background that led to FPE as an empirically-supported treatment for persons with major psychiatric disorders.

2 FA M I L Y I N T E RV E N T I O N S IN M A J O R ME N T A L I L L N ESS models and commonalities

Across the years, numerous models have emerged to involve or educate families in the treatment of loved ones with serious mental illness (SMI). As may be seen in Table 2.1, family interventions may vary in format or participants, basic premise, treatment modality, and expected outcomes. The basic premise of course informs the treatment modality and anticipated outcomes. Except for some family therapy approaches that are based on systemic dysfunction, most family interventions are primarily intended to satisfy an empirical need for information and skills that will facilitate illness management. All of these models teach a theoretical model of illness based on diathesis-stress, described more fully in Chapter 4. All aim at improving the relationship and quality of life of both patients and families, with resultant decreases in needs for hospitalization. Family therapy was the first intervention model that addressed family involvement in the treatment of schizophrenia. The first efforts were largely based on changing maladaptive family systems that were assumed to generate and perpetuate psychotic behaviors. The modalities were essential structural or strategic approaches, and the hoped-for outcome was systems change with subsequent symptom elimination. As indicated in Table 2.1, there are still family therapy models for treatment of schizophrenia that are based on a premise of family dysfunction such as the Milan School (Selvini Palozzoli et al., 1989), although many family therapists such as Julian Leff (2005) have renounced the idea of pre-existing family pathology requiring treatment. As Marsh (2001) has pointed out, newer models of family therapy address family problems without necessarily assuming they are directly related to causing or exacerbating mental illness in a loved one. Rather, pre-existing family problems are likely to be exacerbated by illness-related stress. Thus, in addition to education

8

TABLE 2.1 FAMILY THERAPY, CONSULTATION, PSYCHOEDUCATION, EDUCATION, SUPPORT, PARTICIPANTS, MODALITY, PREMISE, AND EXPECTED OUTCOMES

family therapy

Participants Family

Modality Systems, strategic structural change

Premise Family systemic dysfunction

Outcomes Symptom elimination, systemic change

family consultation

Family, patient

Consulting on familydefined problems

Family need for specific expertise

Resolution of family-defined problems

family psychoeducation

Family, with/without patient; single or group format

Education, support, illness management, problem solving

Familial EE, behavior affects Relapse/symptom reduction: patient. outcome; families need lower family burden help for illness management and coping

family education

Multi-family group, led by Education, support, illness professionally trained peers management, satisfying own needs

Families need help for coping, living own lives

Family well-being irrespective of patient outcome

psychoeducational support group

Multi-family group, led by professionals

Group sharing helps coping—advocacy gives mastery over own life and resources for patients

Family/patient well-being and improved, resources for services, research, public education/anti-stigma

family support and advocacy group

Multi-family, led by peers

Education, support, sharing management strategies, advocacy for resources

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and support, some family members may benefit from a type of family therapy that is similar to family psychoeducation (FPE). An example is the medical family therapy of McDaniel, Hepworth, and Doherty (1992), designed to assist families facing serious health problems. Like FPE for SMI, medical family therapy focuses on strengthening family caregiving skills, reducing family burden, and enhancing family well-being (Marsh and Lefley, in press). However, as opposed to psychoeducation, none of these models has produced a body of adequate empirical data to indicate positive outcomes for persons with SMI. Family consultation addresses the concerns of many families in dealing with illnessrelated issues, accessing resources, making informed choice about their use of other services, or simply prioritizing their needs. Specific needs may involve making decisions about living arrangements, obtaining federal entitlements, finding resources to deal with concurrent substance abuse, and the like. Bernheim (1994) notes that there are substantive differences between family consultation and a therapeutic model of family interventions. Family members are presumed competent to set a service agenda. “Unlike therapy . . . the family consultant behaves more like an attorney or accountant, laying out the options and helping consultees assess the relative merits and risks of each. . . . The family is not regarded as an unidentified patient” (p. 189). Bernheim further notes that consultants differ from a strictly educational model by offering specific advice and problem-solving assistance. Unlike the formal structure and group format of family education, consultation focuses on immediate needs and agendas. The consultant may also of course refer consultees to clinical services depending on their needs and desires. Pioneer family therapist Lyman Wynne and his colleagues offer a model of family consultation defined as “the process in which a consultee seeks assistance from a consultant in order to identify or clarify a concern or problem and to consider the options available for problem resolution” (Wynne, Weber, and McDaniel, 1986, p.8). As Marsh (2001) points out, the consultant offers expertise, skill, or competence, based on a meta-analytic view that incorporates the multiple contexts of systems involved in resolving the presenting problem. However, the consultee can reject recommendations and retains primary responsibility for action. Consultation may be sufficient for some families, particularly if it is offered at the time of the initial diagnosis and thereafter on an as-needed basis, such as during crises or family transitions. Some excellent independently-funded consultative services have included those offered by the Training, Education, & Consultation (TEC) Family Center in Philadelphia (see Meisel and Mannion, 1989) and by Intensive Family Support Services in New Jersey (described in McFarlane et al., 2002). At the TEC Family Center, Mannion (2000) has developed a manual for including family consultation as a routine offering of mental health facilities. Solomon et al. (2002) note that this intervention is especially attractive to families whose relatives reject mental health services.

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Family psychoeducation is one of the major evidence-based treatments (EBTs) for major psychiatric disorders (Dixon et al., 2001), particularly schizophrenia (Kuipers, Birchwood, and McCreadie, R.G., 2002) and bipolar disorder (Miklowitz et al., 2000). The strong empirical evidence for the clinical, social, family, and economic benefits of FPE will be further elucidated in the section on research findings. There are common core elements in all FPE. Included are support for family caregivers and state-of-the-art information about the illness, its presumed etiology, and its treatments. There is information on various medications and their expected effects and side effects. Illness-management techniques include coping with symptomatic behaviors, assessing prodromal cues of decompensation, and crisis management. Families are taught communication skills and techniques for problem solving. Specific components of various approaches are given in the section on Model Programs in Chapter 5. Pitschel-Walz et al. (2001) have defined a variety of interventions as psychoeducation. Models with research findings include family therapy in single-family or multi-family settings, psychoeducational relatives’ groups, educational lectures for relatives, counseling groups for relatives, and group therapy for relatives. “Most of these interventions can be subsumed under the category of ‘psychoeducation’ or at least contain psychoeducation as an essential component. ‘Psychoeducation is the most common collective designation for an intervention that combines the imparting of information with therapeutic elements, and the term is internationally acknowledged”(pp. 73–74). This definition, however, conflates briefer models and those oriented toward family well-being alone with the preferred minimal nine-month (McFarlane, 2002) intensive models that qualify FPE as a legitimate evidence-based practice (EBP). Family education contains essentially the same didactic components as family FPE. However, it differs in important respects. Education is usually offered to families in groups, typically without the patient present, and rarely involves individual family assessments. Although several family education models have now yielded outcome data, family education is not research-oriented. There are no hypotheses regarding effects on patients. The sessions are not always clinically-based or professionally led. Many family education models solicit and incorporate family input in their design. Sometimes, they offer continuity after the sessions end, in terms of support groups or involvement in political advocacy groups. Family education is designed to help key relatives or caregivers understand and cope with the illness. Solomon (1996) has differentiated between family psychoeducation and family education in terms of anticipated outcomes, distinguishing symptom and relapse reduction from reduction of families’ distress and burden. Almost all the controlled studies have focused on patient outcome. However, shorter-term manualized programs have also been developed for family groups,

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with attendant research on participants’ knowledge and well-being, without regard to other factors. A hoped-for result is enhancement of the well-being of the total family, including of course the patient. Family education is usually much briefer in duration than evidence-based family psychoeducation. Finally, although much family education has been offered by professionals, it is also offered by well-trained family members using manualized materials with similar content. Research data on some of these efforts are shown in Chapter 9 on family education. The Psychoeducational Support Group is an open-ended continuous service offered by a clinical facility to relatives and friends of adults with serious and persistent mental illness. This is a free service for families and friends of patients and is often open to the general public. Time-limited family interventions, empirically justified in their own right, nevertheless cannot address unexpected problems that arise with cyclical psychiatric disorders. The open-ended model offers education, support, illness management, and problem-solving on an ad hoc basis, specific to current needs of individual cases, and tailored to lifespan and illness trajectory issues. In addition to didactics and training in behavior management, the psychoeducational support group offers shared experiences and coping strategies, resource information, social networking, and cross-parenting in terms of concrete aid for members’ relatives. Members also offer living proofs of improvement and recovery. Participation serves both long-term and crisis needs and is not time-limited. Although there are anecdotal accounts of effectiveness in improving patients’ recovery (e.g., Lefley, 2007), the model has not been subjected to any systematic research. Family Support and Advocacy Groups are ongoing support groups such as those offered by NAMI and Mental Health America (MHA). These are typically led by family members. In many ways the groups fulfill the benefits of shared experiences ascribed by McFarlane (2002) to the multi-family psychoeducational model. Family groups normalize reactions of fear, guilt, and grieving. They offer resource information, exchange of coping strategies, a social network for isolated families, enhanced problem-solving capability, involvement in advocacy activities, and positive success stories with renewed hope for recovery. Advocacy organizations such as NAMI and MHA, focusing on favorable legislation, funding for research and services, and stigma reduction, offer an action medium for families who wish to go beyond mutual support and improve the systems that impact their lives.

VARIATIONS AND MERGED MODELS OF FAMILY INTERVENTIONS Except for structured or manualized models with specific time frames, family interventions may vary widely in format and content. Content has been adapted for specific ethnic or cultural groups (Lefley and Johnson, 2002) and for immigrant populations. Some examples of these are given in Chapter 8. Other variations

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include: patient present or absent; single family versus multi-family; time-limited versus ongoing; diagnosis-specific versus severe mental illness; first episode versus long-term; mental illness with concurrent substance abuse, or mentally ill criminal offenders. Some interventions are specifically designed for spouses (Mannion, Mueser, and Solomon, 1994) or other family members. In some models, FPE may be primary, but it is merged with and incorporates family therapy techniques (Marsh, 2001; Leff, 2005). McFarlane (1997) has highlighted the benefits of merging multifamily group psychoeducation with another EBP, assertive community treatment. FPE addressed to the needs of specific groups are discussed in Chapter 7, following presentation of some seminal programs and their research findings. To summarize, in this chapter, we have discussed various models of family interventions which at one time or another have been utilized, or recommended, for families of persons with SMI. Family therapy, which is based on a premise of systemic dysfunction has not proved to be effective, but newer models of family therapy, designed to assist families in coping with various types of illness, may be more beneficial. Family consultation is limited to helping families address specific concerns, but there is little research on its effectiveness. FPE, an empirically derived treatment, has core elements of support for families, information about the illness and treatment, and illness-management techniques including communication skills and problem-solving strategies. Most of this book is devoted to the copious research base on this model’s effectiveness. In contrast to FPE, which focuses on patient outcome, family education is designed to help key relatives understand and cope with the illness and to reduce family burden, regardless of benefits to the patient. In Chapter 9, various models are described with data on their effects. We have added two other types of interventions, both multi-family models. The psychoeducational support group may be offered by some agencies as an open-ended ongoing supportive resource for patients’ families or for the general public, with families participating according to need. There are no data on this model as yet. Finally, there are family support groups, which are also open ended and continuous, but are usually extensions of advocacy groups such as NAMI. Some supportive data are available on their effects (Mannion, Meisel, Solomon, and Draine, 1996). With the exception of family consultation, which is limited to answering specific needs of individual families, and to the family therapy model that primarily focuses on changing the family system, all of these interventions share a common theme. They offer families support and an understanding of the needs of caregivers. The educational materials focus on the major mental illnesses and their treatments, and illness management techniques that include communication skills and problem-solving strategies. Families may learn about entitlement programs or helpful area resources, including psychosocial programs and consumer groups. Most interventions also focus on common psychological issues, alleviating

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unjustified guilt and easing family burden. They typically emphasize that caregivers need to guard their own psychological and physical well-being and have the right to live their own lives free of worry and pain. As research, however, only family psychoeducation fully satisfies the EBP criteria established in the Introduction section, and its supportive findings in various sites throughout the world are covered in forthcoming chapters. In Chapter 9, we also learn about family education, which targets families rather than patients in terms of outcome variables. Administered by trained family members, rather than by professionals, two family education programs fulfill almost all the criteria, including replication by the same researchers. As yet, there has been no attempt to replicate them by different investigative teams.

3 F A M I L I E S , S C H I Z O P H RE N IA, AND OT HE R MA J O R D I S O RD ER S historical background

Family psychoeducation (FPE) is a long-overdue, well-accepted therapeutic modality that finally provides families with what they have long been requesting— information, support, and illness-management techniques. These requests seem so eminently reasonable that one wonders why it took so many years for mental health systems to comply. This chapter presents some of the background that led to FPE, a history of theoretical constructs and their correlative therapies, some of which were damaging rather than helpful to patients and families. With de-institutionalization and community-based treatment, families have become major caregivers and support systems for their relatives with severe mental illness. So the need for clinical understanding of the caregiving experience is increasingly apparent. FPE is a welcome and much-needed antidote to an era of now-discredited theories about schizophrenia. Some attributed etiology to destructive patterns of parenting or mystifying communication styles. Others viewed symptoms as useful in maintaining a spurious homeostasis in dysfunctional family systems. All the theories tended to adversely affect the interactions of mental health professionals, and mental health staff, with the family members of their patients. In the psychoanalytic tradition, almost all serious psychiatric disorders were attributed to bad mothering practices in infancy or early childhood. FrommReichmann’s (1948) concept of “schizophrenogenic mother,” a woman with the paradoxical features of being cold and rejecting and also overprotective and fostering dependence, was widely accepted, although, as noted by family therapist Froma Walsh (1988), the concept was never consistently defined or measured. The basic assumption was that maternal traits and character deficiencies produced destructive patterns of mothering responsible for the child’s disorder.

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Discussing concepts of the pathogenesis of schizophrenia, McGlashan (1989) states that “Virtually all psychoanalytic theorists postulate an experiential disharmony between the mother and her preschizophrenic infant. . . . The purported central pathogenic elements are dysphoric experiences which become internalized as aberrant psychological structures. Explicitly or implicitly, the psychogenic models of schizophrenia regard these experiences as sufficient to explain most if not all cases of the syndrome” (p. 751). McGlashan further suggests that all theorists implicated the mother in the arrested development that would generate psychosis. To Harry Stack Sullivan, for example, the pathogenesis of schizophrenia “begins with a mother who is more anxious than normal and who imparts this tension to her child as excessive not-me experiences. The child’s self-system, developing around the time of speech acquisition, overcompensates with excessive dissociation and warps its own further development” (McGlashan, 1989, p. 748). In recent years, psychoanalysts have been willing to incorporate current research findings on the biological basis of many of the psychotic or developmental disorders previously attributed to poor parenting. Glen Gabbard, a leading psychoanalyst, admits that “To be sure, the field of psychoanalysis has made a series of historical errors. Among these were the concepts of the ‘schizophrenogenic mother’ in the case of schizophrenia and the ‘refrigerator mother’ in the case of early infantile autism. These are egregious examples of the privileging of psychoanalytic developmental theory over empirical research” (Gabbard, 2005, p. 741). Gabbard’s concern, however, is with psychoanalytic “arrogance and complacency” vis a vis scientific research. There seems to be little concern in the psychoanalytic literature with the toxic effects of these theories on suffering parents trying to cope with extremely difficult and incomprehensible behaviors and receiving little help from those who treat their children.

HOSTILITY AND DOUBLE BINDS FROM MENTAL HEALTH PROFESSIONALS For many years, families felt abandoned and misguided by mental health professionals who not only failed to cure their children, but often treated them with ill-concealed hostility and contempt. Despite the caveats against demonstrating counter-transferential dislike of patients, no such caveats exist with respect to families. It is very difficult to be understanding or kind to parents who are presumed to have wreaked such terrible havoc on the children they claim to love. Johnson (2000) notes, “In no other area of treatment for illness have families of the ill been such objects of contempt and scathing criticism by professionals as have the families of the mentally ill” (pp. 55–56). He asks us to consider the descriptions in the literature. A study of families of first-time patients admitted to a psychiatric hospital offers the following typologies: assertives, altercasters,

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authoritarians, stoics, poltroons, pacifists, stumblers, and do-nothings” (Spitzer et al., 1982). Another study offers just three categories: over-involved, underinvolved, and pseudo-involved (Krajewski and Harbin, 1982). Schuman (1983) divided families of hospitalized schizophrenic patients into just two categories: the “schizophrenic family” in which all members function at a very low level, and “the family with a schizophrenic member,” in which “there may be high levels of social or vocational achievement.; on an emotional level, however, significant members possess low levels of self,. They function with what Bowen has described as a ‘pseudo-self’ rather than solid self” (p. 43). Reynolds and Farberow (1981) state: “In addition to genetic factors there seem to be at least five characteristics attributable to schizophrenic families: (1) excessively closed family systems; (2) shared family myths or delusions; (3) paralogic modes of thinking in all the family members; (4) lack of individuation and self-identity of members from the family ‘ego mass’. . .; and (5) intense, pathological symbiotic attachments of the child to parents and of parents to grandparents” (p. 126). Liem (1980) pointed out that these types of family descriptions have been analogous to a trait theory perspective, generalizing characteristics that may pertain for a small sub-group to all families of persons with schizophrenia. They seem preposterous when one considers that schizophrenia is found throughout the world in numerous family structures, many of whom are described as empathic, patient, calm, and respectful (Leff and Vaughn, 1985). Nevertheless, these ideas have permeated the field, generating interactions with families that range from guarded to hostile and exclusionary. The early family-therapy approaches to schizophrenia were based on assumptions that symptoms had a functional role in the economy of family systems, and that they would disappear with effective therapy. This essential stance was maintained in the Milan school, which saw schizophrenia as part of the family game (Selvini Palazzoli, Cirillo, Selvini, and Sorrentino, 1989). Shaw (1987) pointed out that strategic, systemic, or structural family therapies have not proved beneficial because they are based on a replacement paradigm, which conflicts with the realties of schizophrenia as a legitimate illness and a stress on the family. He notes that families respond much better to psychoeducational approaches, which are based on a repair paradigm. In an effort to demonstrate efficacy of an intervention with no prior research base, a recent Milan School study compared 20 patients treated with systemic family therapy with a control sample of 20 in routine treatment. They found that at one year, 15% of the treated group had relapsed versus 65% in the control group (p