The Family And HIV Today: Recent Research and Practice

THE FAMILY AND HIV TODAY

OTHER TITLES AVAILABLE FROM CASSELL: R. Bor and J. Elford: The Family and HIV R. Bor, R. Miller, M. Latz and H. Salt: Counselling in Health Care Settings R. Bor, R. Miller and E. Goldman: Theory and Practice of HIV Counselling

THE FAMILY AND HIV TODAY Recent research and practice Robert Bor and Jonathan Elford

CASSELL

Cassell Wellington House 125 Strand London WC2R OBB

370 Lexington Avenue New York NY 10017-6550

© Robert Bor and Jonathan Elford 1998 All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical including photocopying, recording or any information storage or retrieval system, without prior permission in writing from the publishers. First published 1998 British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. ISBN 0-304-70188-2 (paperback)

Typeset by SetSystems Ltd, Saffron Walden Printed and bound in Great Britain by Redwood Books, Trowbridge, Wiltshire

CONTENTS

LIST OF CONTRIBUTORS

ix

ACKNOWLEDGEMENTS

xv

FOREWORD

xix

INTRODUCTION: THE FAMILY AND HIV Robert Bor and Jonathan Elford

xxi

DISCLOSURE 1 Self-Disclosure of HIV Infection among Men who Vary in Time since Seropositive Diagnosis and Symptomatic Status Gordon Mansergh, Gary Marks and Jane M. Simoni 2 HIV-Positive Patient's Choice of a Significant Other to be Informed about the HIV-Test Result: Findings from an HIV/AIDS Counselling Programme in the Regional Hospitals of Arusha and Kilimanjaro, Tanzania Gro Therese Lie and Paul M. Biswalo 3 Culturally Sanctioned Secrets? Latino Men's Nondisclosure of HIV Infection to Family, Friends, and Lovers Hyacinth R. C. Mason, Gary Marks, Jane M. Simoni, Monica S. Ruiz and Jean L. Richardson 4 Negotiating Sexual Relationships after Testing HIV-Positive Barry D. Adam and Alan Sears

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14

28

41

SOCIAL SUPPORT 5 Support Service Use by Persons with AIDS and their Caregivers Richard G. Wight, Allen J. LeBlanc and Carol S. Aneshensel 6 Carers' Burden and Adjustment to HIV Kenneth I. Pakenham, Mark R. Dadds and Debra J. Terry

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7 Identifying Helpful and Unhelpful Behaviours of Loved Ones: The PWA's Perspective Robert B. Hays, Robert H. Magee and Sarah Chauncey 8 Reliance by Gay Men and Intravenous Drug Users on Friends and Family for AIDS-Related Care Darcy Johnston, Ron Stall and Kevin Smith 9 Perceptions of Social Support and Psychological Adaptation to Sexually Acquired HIV among White and African American Men Larry M. Gant and David G. Ostrow

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PARTNERS 10 Family Support for Heterosexual Partners in HIV-Serodiscordant Couples Marianne Foley, Joan H. Skurnick, Cheryl A. Kennedy, Ramona Valentin and Donald B. Louria 11 The Social Dynamics of HIV Transmission as Reflected Through Discordant Couples in Rural Uganda David Serwadda, Ronald H. Gray, Maria J. Wawer, Rebecca Y. Stallings, Nelson K. Sewankambo, Joseph K. Konde-Lule, Bongs Lainjo and Robert Kelly 12 Prevention of Heterosexual Transmission of Human Immunodeficiency Virus Through Couple Counseling Nancy S. Padian, Thomas R. O'Brien, YoChi Chang, Sarah Glass and Donald P. Francis 13 Gender Differences in HIV-Related Psychological Distress in Heterosexual Couples Cheryl A. Kennedy, Joan H. Skurnick, Marianne Foley and Donald B. Louria 14 Intimacy and Sexual Risk Behaviour in Serodiscordant Male Couples Robert H. Remien, Alex Carballo-Dieguez and Glenn Wagner 15 Factors Associated with Hispanic Women's HIV-Related Communication and Condom Use with Male Partners Jan Moore, Janet S. Harrison, Kelly L. Kay, Sherry Deren and Lynda S. Doll

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150

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187

PARENTS AND CHILDREN 16 Orphan Prevalence and Extended Family Care in a Peri-Urban Community in Zimbabwe Geoff Foster, Ruth Shakespeare, Frances Chinemana, Helen Jackson, Simon Gregson, Choice Marange and Stanley Mashumba

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17 The Orphan Problem: Experience of a Sub-Saharan Africa Rural Population in the AIDS Epidemic Anatoli Kamali, Janet A. Seeley, Andrew J. Nunn, Jane F. KengeyaKayondo, Anthony Ruberantwari and Daan W. Mulder 18 Who are the Primary Caretakers of Children Born to HIV-Infected Mothers? Results from a Multistate Surveillance Project Barbara Schable, Theresa Diaz, Susan Y. Chu, M. Blake Caldwell, Lisa Conti, Ollie M. Alston, Frank Sorvillo, Patricia J. Checko, Pat Hermann, Arthur J. Davidson, Denise Boyd, S. Alan Fann, Mary Hen and Margaret Frederick 19 'We Just Want to be a Normal Family . . .'. Paediatric HIV/AIDS Services at an Inner-London Teaching Hospital Geraldine Barrett and Christina R. Victor 20 Parents with Human Immunodeficiency Virus Infection: Perceptions of their Children's Emotional Needs Virginia N. Niebuhr, Janice R. Hughes and Richard B. Pollard 21 Childhood Bereavement Due to Parental Death from Acquired Immunodeficiency Syndrome Karolynn Siegel and Eileen Gorey INDEX

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List of Contributors

Barry D. Adam

University of Windsor, Ontario, Canada

Ollie M. Alston

Michigan Department of Public Health, Detroit, Michigan, USA

Carol S. Aneshensel

UCLA School of Public Health, Los Angeles, California, USA

Geraldine Barrett

Department of Public Health, Kensington & Chelsea and Westminster Commissioning Agency, London, UK

Paul M. Biswalo

Faculty of Education, University of Dar es Salaam, Tanzania

Denise Boyd

Arizona Department of Health, Phoenix, Arizona, USA

M. Blake Caldwell

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Alex Carballo-Dieguez

HIV Center for Clinical and Behavioral Studies, Columbia University, New York, USA

YoChi Chang

Department of Obstetrics and Gynecology and Department of Epidemiology and Biostatistics, University of California, San Francisco, California, USA

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LIST OF CONTRIBUTORS

Sarah Chauncey

Department of Psychology, George Washington University, Washington, DC, USA

Patricia J. Checko

Connecticut State Department of Health Services, Hartford, Connecticut, USA

Frances Chinemana

Women and AIDS Support Network, Harare, Zimbabwe

Susan Y. Chu

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Lisa Conti

Florida Department of Health and Rehabilitative Services, Tallahassee, Florida, USA

Mark R. Dadds

University of Queensland, Australia

Arthur J. Davidson

Denver Department of Health and Hospitals, Denver, Colorado, USA

Sherry Deren

National Development and Research Institutes Inc., New York, USA

Theresa Diaz

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Lynda S. Doll

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

S. Alan Fann

Georgia Department of Human Resources, Atlanta, Georgia, USA

Marianne Foley

Texas Department of Health, Austin, Texas, USA

Geoff Foster

Paediatric Department, Mutare Hospital, Mutare, Zimbabwe

Donald P. Francis

National Centers for Prevention Services, Centers for Disease Control, Atlanta, Georgia, USA

Margaret Frederick

Washington Department of Health, Seattle, Washington, USA

Larry M. Gant

School of Social Work, University of Michigan, Ann Arbor, Michigan, USA

Sarah Glass

Department of Obstetrics and Gynecology and Department of Epidemiology and Biostatistics, University of California, San Francisco, California, USA

LIST OF CONTRIBUTORS

xi

Eileen Gorey

Memorial Sloan-Kettering Cancer Center, New York, USA

Ronald H. Gray

Johns Hopkins University School of Hygiene and Public Health, Baltimore, Maryland, USA

Simon Gregson

Infectious Disease Epidemiology Unit, University of Oxford, UK

Janet S. Harrison

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Robert B. Hays

Center for AIDS Prevention Studies, University of California, San Francisco, USA

Pat Hermann

South Carolina Department of Health and Environmental Control, Columbia, South Carolina, USA

Mary Herr

Delaware Department of Health and Social Services, Wilmington, Delaware, USA

Janice R. Hughes

Department of Pediatrics, University of Texas Medical Branch, Galveston, Texas, USA

Helen Jackson

School of Social Work, Harare, Zimbabwe

Darcy Johnston

Joint Program in Medical Anthropology, University of California, San Francisco and Berkeley, California, USA

Anatoli Kamali

Uganda Virus Research Institute, Entebbe, Uganda

Kelly L. Kay

The ORKAND Corporation Inc., Atlanta, Georgia, USA

Robert Kelly

Center for Population and Family Health, Columbia University School of Public Health, New York, USA

Jane F. Kengeya-Kayondo

Uganda Virus Research Institute, Entebbe, Uganda

Cheryl A. Kennedy

Department of Preventive Medicine and Community Health, and Department of Psychiatry, New Jersey Medical School, Newark, New Jersey, USA

Joseph K. Konde-Lule

Institute of Public Health, Makerere University, Kampala, Uganda

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LIST OF CONTRIBUTORS

Bongs Lainjo

Center for Population and Family Health, Columbia University School of Public Health, New York, USA

Allen J. LeBlanc

UCLA School of Public Health, Los Angeles, California, USA

Gro Therese Lie

Research Center for Health Promotion, University of Bergen, Norway

Donald B. Louria

Department of Preventive Medicine and Community Health, New Jersey Medical School, Newark, New Jersey, USA

Robert H. Magee

Department of Clinical Psychology, Wright Institute, Berkeley, California, USA

Gordon Mansergh

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Choice Marange

Family AIDS Caring Trust, Mutare, Zimbabwe

Gary Marks

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Stanley Mashumba

Plan International, Mutare, Zimbabwe

Hyacinth R. C. Mason

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Jan Moore

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Daan W. Mulder

Uganda Virus Research Institute, Entebbe, Uganda

Virginia N. Niebuhr

Department of Pediatrics, University of Texas Medical Branch, Galveston, Texas, USA

Andrew J. Nunn

Uganda Virus Research Institute, Entebbe, Uganda

Thomas R. O'Brien

Division of HIV/AIDS, National Center for Infectious Diseases, Atlanta, Georgia, USA

David G. Ostrow

Center for AIDS Intervention Research, University of Wisconsin-Milwaukee, USA

Nancy S. Padian

Department of Obstetrics and Gynecology and Department of Epidemiology and Biostatistics, University of California, San Francisco, California, USA

LIST OF CONTRIBUTORS

xiii

Kenneth I. Pakenham

Department of Psychology, University of Queensland, Australia

Richard B. Pollard

Division of Infectious Diseases, University of Texas Medical Branch, Galveston, Texas, USA

Robert H. Remien

HIV Center for Clinical and Behavioral Studies, Columbia University, New York, USA

Jean L. Richardson

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Anthony Ruberantwari

Uganda Virus Research Institute, Entebbe, Uganda

Monica S. Ruiz

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Barbara Schable

Centers for Disease Control and Prevention, Atlanta, Georgia, USA

Alan Sears

University of Windsor, Ontario, Canada

Janet A. Seeley

Uganda Virus Research Institute, Entebbe, Uganda

David Serwadda

Institute of Public Health, Makerere University, Kampala, Uganda

Nelson K. Sewankambo

Department of Medicine, Makerere University, Kampala, Uganda

Ruth Shakespeare

Provincial Medical Directorate, Mutare, Zimbabwe

Karolynn Siegel

Memorial Sloan-Kettering Cancer Center, New York, USA

Jane M. Simoni

Department of Preventive Medicine, University of Southern California, Los Angeles, California, USA

Joan H. Skurnick

Department of Preventive Medicine and Community Health, New Jersey Medical School, Newark, New Jersey, USA

Kevin Smith

Baylor College of Medicine, Houston, Texas, USA

Frank Sorvillo

Los Angeles County Health Department, Los Angeles, California, USA

Ron Stall

Center for AIDS Prevention Studies, University of California, San Francisco, California, USA

Rebecca Y. Stallings

Johns Hopkins University School of Hygiene and Public Health, Baltimore, Maryland, USA

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LIST OF CONTRIBUTORS

Debra J. Terry

University of Queensland, Australia

Ramona Valentin

Department of Preventive Medicine and Community Health, New Jersey Medical School, Newark, New Jersey, USA

Christina R. Victor

Department of Public Health, Kensington & Chelsea and Westminster Commissioning Agency, London, UK

Glenn Wagner

HIV Center for Clinical and Behavioral Studies, Columbia University, New York, USA

Maria J. Wawer

Center for Population and Family Health, Columbia University School of Public Health, New York, USA

Richard G. Wight

UCLA School of Public Health, Los Angeles, California, USA

Acknowledgements

We would like to thank the following publishers for permission to reprint the papers indicated. © 1995 Current Science Publishers Ltd © 1995 National Association of Social Chapters 1, 11 Workers, Inc. Chapter 9 © 1996 Carfax Publishing Company Chapters 2, 17 © 1994 Current Science Publishers Ltd Chapter 10 © 1995 American Psychological Association © 1993 Raven Press Chapter 3 Chapter 12 © 1994 Gordon and Breach Publishers Chapter 4

© 1995 American Academy of Pediatrics Chapter 18

© 1995 Carfax Publishing Company Chapters 5, 6, 8, 13, 14, 15,16

© 1994 American Academy of Pediatrics Chapter 20

© 1994 Carfax Publishing Company Chapters 7, 19

© 1994 Williams & Wilkins Chapter 21

LIST OF ALL ORIGINAL PUBLICATIONS, BY CHAPTER NUMBER 1 Mansergh, G., Marks, G. and Simoni, J. M. (1995) Self-disclosure of HIV infection among men who vary in time since seropositive diagnosis and symptomatic status. AIDS, 9, pp. 639-44.

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2 Lie, G. T. and Biswalo, P. M. (1996) HIV-positive patient's choice of a significant other to be informed about the HIV-test result: findings from an HIV/AIDS counselling programme in the regional hospitals of Arusha and Kilimanjaro, Tanzania. AIDS Care, 8, pp. 285-96. 3 Mason, H. R. C, Marks, G., Simoni, J. M., Ruiz, M. S. and Richardson, J. L. (1995) Culturally sanctioned secrets? Latino men's nondisclosure of HIV infection to family, friends, and lovers. Health Psychology, 14, pp. 6-12. 4 Adam, B. D. and Sears, A. (1994) Negotiating sexual relationships after testing HIV-positive. Medical Anthropology, 16, pp. 63-77. 5 Wight, R. G., LeBlanc, A. J. and Aneshensel, C. S. (1995) Support service use by persons with AIDS and their caregivers. AIDS Care, 7, pp. 509-20. 6 Pakenham, K. I., Dadds, M. R. and Terry, D. J. (1995) Carers' burden and adjustment to HIV. AIDS Care, 1, pp. 189-203. 7 Hays, R. B., Magee, R. H. and Chauncey, S. (1994) Identifying helpful and unhelpful behaviours of loved ones: the PWA's perspective. AIDS Care, 6, pp. 379-92. 8 Johnston, D., Stall, R. and Smith, K. (1995) Reliance by gay men and intravenous drug users on friends and family for AIDS-related care. AIDS Care, 1, pp. 307-19. 9 Gant, L. M. and Ostrow, D. G. (1995) Perceptions of social support and psychological adaptation to sexually acquired HIV among white and African American men. Social Work, 40, pp. 215-24. 10 Foley, M., Skurnick, J. H., Kennedy, C. A., Valentin, R. and Louria, D. B. (1994) Family support for heterosexual partners in HIV-serodiscordant couples. AIDS, 8, pp. 1483-7. 11 Serwadda, D., Gray, R. H., Wawer, M. J., Stallings, R. Y., Sewankambo, N. K., Konde-Lule, J. K., Lainjo, B. and Kelly, R. (1995) The social dynamics of HIV transmission as reflected through discordant couples in rural Uganda. AIDS, 9, pp. 745-50. 12 Padian, N. S., O'Brien, T. R., Chang, Y., Glass, S. and Francis, D. P. (1993) Prevention of heterosexual transmission of human immunodeficiency virus through couple counseling. Journal of Acquired Immune Deficiency Syndromes, 6, pp. 1043-8. 13 Kennedy, C. A., Skurnick, J., Foley, M. and Louria, D. B. (1995) Gender differences in HIV-related psychological distress in heterosexual couples. AIDS Care, 7 (Suppl. 1), pp. 33-8. 14 Remien, R. H., Carballo-Dieguez, A. and Wagner, G. (1995) Intimacy and sexual risk behaviour in serodiscordant male couples. AIDS Care, 7, pp. 429-38.

ACKNOWLEDGEMENTS

xvii

15 Moore, J., Harrison, J. S., Kay, K. L., Deren, S. and Doll, L. S. (1995) Factors associated with Hispanic women's HIV-related communication and condom use with male partners. AIDS Care, 7, pp. 415-27. 16 Foster, G., Shakespeare, R., Chinamana, F., Jackson, H., Gregson, S., Marange, C. and Mashumba, S. (1995) Orphan prevalence and extended family care in a peri-urban community in Zimbabwe. AIDS Care, 7, pp. 1—15. 17 Kamali, A., Seeley, J. A., Nunn, J., Kengeya-Kayondo, J. F., Ruberantwari, A. and Mulder, D. W. (1996) The orphan problem: experience of a sub-Saharan Africa rural population in the AIDS epidemic. AIDS Care, 8, pp. 509-15. 18 Schable, B., Diaz, T., Chu, S. Y., Caldwell, M. B., Conti, L., Alston, O. M., Sorvillo, F., Checko, P. J., Hermann, P., Davidson, A. J., Boyd, D., Fann, S. A., Herr, M. and Frederick, M. (1995) Who are the primary caretakers of children born to HIV-infected mothers? Results from a multistate surveillance project. Pediatrics, 95, pp. 511-15. 19 Barrett, G. and Victor, C. R. (1994) 'We just want to be a normal family . . .'. Paediatric HIV/AIDS services at an inner-London teaching hospital. AIDS Care, 6, pp. 423-33. 20 Niebuhr, V. N., Hughes, J. R. and Pollard, R. B. (1994) Parents with human immunodeficiency virus infection: perceptions of their children's emotional needs. Pediatrics, 93, pp. 421-6. 21 Siegel, K. and Gorey, E. (1994) Childhood bereavement due to parental death from acquired immunodeficiency syndrome. Developmental and Behavioral Pediatrics, 15, pp. S66-S70. We gratefully acknowledge the help and support of Elaine Harris who painstakingly prepared the manuscript, and Naomi Roth, our publisher at Cassell, for her continued interest and encouragement.

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Foreword

Uncertainty, rapid change and huge emotional and ideological significance are characteristics of both of the fields brought together in this volume. The orthodoxies of even five years ago about family functioning are no longer adequate, and our understanding of HIV changes at lightning speed as models are declared obsolete and new ones take their place, yesterday's medication is declared inadequate and new drugs produced, and last year's life-threatening illness now merits only a few days in hospital. Both HIV and the family are also the subject of powerful emotional responses from social and political groupings which regard them as being in direct opposition to each other. HIV and the family are both hugely salient topics in our society - one needs look no further in the West than the public and media responses around the legitimacy of single motherhood or the morality of not disclosing one's HIV status to sexual partners. Nor is this situation any different outside the developed nations: opposing parties debate heatedly the decadence or progressiveness of Western values around notions of the family and the place of women and children in it, and Western liberal attitudes to HIV, sex and recreational drug use are brought under intense scrutiny by secular, political and religious leaders. It is against this background that this volume on HIV and the family needs to be read. There is a need for a book such as this which, like the first volume of The Family and HIV, presents us with research and information aimed at a better understanding of the field. This volume makes available to researchers and clinical practitioners some snapshots of what is actually going on for people how HIV is affecting their lives, how HIV is affecting them in their social and familial relationships. This volume will provide a much-needed source by which to improve our

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FOREWORD

understanding of changes in society and social groupings. The term 'family' itself is notoriously indefinable; distinguishing between family of origin and family of choice is not an adequate distinction at the end of the twentieth century, when the use of the word 'family' can imply a whole range of social, political or religious beliefs. The research in this book helps us to understand better the ways in which people are associating with one another in meaningful social units. Further, the work outlined in this book helps us to understand illness not just in a social context, but illness and responses to it as a social context, as a fundamental part of relationships and family life. Of course, the challenge which this work throws up is how best to use the research as practical underpinning for the provision of services for people affected by HIV, not just for people on their own but rather as a part of a network of social and familial relationships. The need for detailed information about what is going on in families and between couples affected by HIV is clear. This book, and its predecessor, provide an ongoing response to that need - ongoing because the nature of HIV disease is not static and changes constantly. I hope that others will be inspired to take up and continue this ongoing work. Darren Wolf Counselling Services Manager Terrence Higgins Trust April 1998

Introduction: The Family and HIV Robert Bor and Jonathan Elford

The first volume of The Family and HIV highlighted the impact of HIV on the family in its broadest sense. Traditionally, the family is seen to provide support for people when they are ill. However, because of the associated stigma and possible risk of transmission, HIV can have an impact on choice of partners, availability of support, relationships with children and psychological well-being of family and friends. Additionally, HIV raises questions about the construct of 'family', which may comprise parents, grandparents, spouse, children and other relatives (family of origin) as well as friends and partners (family of affiliation). While there have been rapid advances in treatment and care, the number of people living with HIV globally continues to increase, as does the number of those affected. Consequently, HIV remains an issue for both the family of origin and affiliation while the dynamics of family relationships remain in turn important to people with HIV. For these reasons alone, it seemed timely to revisit the subject of family and HIV. What are the issues that have emerged in the last few years around HIV and the family? Two of the most prominent are disclosure of HIV status and children who are orphaned as a result of HIV. Disclosure touches upon stigma, discrimination and access to social support. Research in this area has received greater attention in the last few years than previously. Children have long been affected by HIV but, as parents with HIV have become unwell and died, orphanhood has emerged in recent years as a concern that requires attention. Other topics, such as social support and the impact of HIV on couples and partners, continue to be of importance. Much research has been conducted in these areas since publication of the first volume of The Family and HIV, some of which is included here.

xxii INTRODUCTION

DISCLOSURE Patterns of disclosure help us understand a person's experience and fear of stigma. In the USA, patterns of disclosure varied according to length of time since HIV diagnosis, stage of illness and the relationship with the person they told (Mansergh et al., Chapter 1). Contrary to popular widsom, the authors found that the family — of origin or affiliation — was generally supportive following disclosure of HIV status. On the other hand, Lie and Biswalo (Chapter 2) reported that HIV-infected adults in Tanzania generally did not disclose their HIV status to their spouse or partner, but were more likely to tell somebody else within the extended family to whom they were close. A study of Latino and white men in the USA revealed that Latinos were less likely than white men to disclose their HIV status to family, friends or lovers (Mason et al., Chapter 3). Among Latinos, Spanish-speaking men were in turn less likely to have revealed their status than English-speaking men. From Canada comes a report on the repercussions of the disclosure of HIV status on current and new relationships (Adam and Sears, Chapter 4). Occasionally disclosure of HIV seropositivity by men or women was used to discourage would-be suitors. Clearly, patterns of disclosure need to be studied in context, since they vary enormously between different groups and settings.

SOCIAL SUPPORT The link between social support and psychological well-being is well established for people who are ill; however, the welfare of carers is often overlooked. From the USA, Wight et al. (Chapter 5) reported that not only did people with HIV require both formal (institutional) and informal (family and friends) support but that the care-givers themselves had an equal need for support. In Australia, Packenham et al. (Chapter 6) found a high degree of correlation 'between patients' and carers' level of adjustment . . . indicating that both patient and carer cope well together or have many problems together'. The authors used the term 'synchrony' between carer and patient to describe this phenomenon. A Washington, D.C. study identified behaviours of carers which were helpful or unhelpful from the point of view of the person with AIDS. Since some carers may inadvertently act in a way that may be perceived to be unhelpful by the person with AIDS, these findings may help to build their support skills (Hayes et al., Chapter 7). Among people with AIDS in San Francisco, gay men relied more on their friends for support - instrumental and emotional - than did drug users (Johnston et al., Chapter 8). Both groups tended not to turn to the family of origin for support. Meanwhile, a word of caution is expressed by Gant and Ostrow (Chapter 9) that the relationship between social support and psychological well-being may not be generalizable to all groups. While, in their study, there was a positive association between social support from friends and family and psychological measures among white American males, there was a negative

INTRODUCTION xxiii

relationship between these variables for African American men. Taken together, these studies among people with HIV suggest that attention should continue to be paid to the nature of social support provided, its impact on psychological wellbeing and the welfare of carers.

PARTNERS HIV within an established relationship presents challenges to each partner, their family and friends. Foley et al. (Chapter 10) conducted a study in New Jersey, USA, among heterosexual couples where one person was HIV-positive and the other was not (serodiscordant). The level of support for the couple provided by family members (e.g., brothers, sisters, parents) varied according to level of education, ethnicity and whether the person affected was HIV-positive. In a study among serodiscordant heterosexual couples in rural Uganda (Serwadda et al., Chapter 11), condom use was more common when the male partner was HIV-positive than when the female was. Preventive behaviour varied according to the sex of the infected partner, highlighting in particular the vulnerability of women in relationships to the risk of HIV infection. In San Francisco, a couplecounselling intervention among serodiscordant heterosexual couples found that condom use and sexual abstinence increased during follow-up (median 1.5 years) (Padian et al., Chapter 12). No new infections were reported in the couples during that period. In a study in the USA among heterosexual couples where at least one, if not both, of the partners was HIV-positive, two-thirds had told their immediate family about their HIV status. However, only half the families who were aware of the participant's HIV status were reported as being supportive (Kennedy et al, Chapter 13). Among serodiscordant male couples in New York, sexual risk behaviour was associated with intimacy and the length of the relationship (Ramien et al., Chapter 14). The authors suggested that interventions among male couples need to recognize the barriers to safer sex reported by this group. Condom use among couples who are not infected but who are at risk of HIV infection has also been examined. In the USA, the quality of communication between Hispanic women and their primary partner strongly influenced the use of condoms, as did the women's expectations of a negative reaction from their partner (Moore et al., Chapter 15). The papers in this section indicate that negotiating condom use within a relationship may challenge notions of intimacy, trust and power, which may need to be addressed.

PARENTS AND CHILDREN HIV in children and parents can have a ripple effect, spreading beyond the immediate family. In Zimbabwe, the extended family assumed a caring role for children orphaned due to HIV-related death. It was reported that members of the maternal family usually looked after orphaned children, which was a departure

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INTRODUCTION

from traditional practice (Foster et al., Chapter 16). A follow-up study among children in Uganda found that nearly half were orphaned as a result of an HIVrelated death of a parent (Kameli et al., Chapter 17). Generally, orphans lived with their surviving parent or extended family, but concern was expressed that the ability of the adoptive family to provide support may be over-stretched in the future. In a study of HIV-infected women with children in the USA, the most common primary provider of care for the children was the mother alone (Schable et al., Chapter 18). These women would benefit from increased child-care assistance and, in particular, from making provision for the children when they become ill themselves. Mothers who found themselves in this predicament in the UK expressed a preference for hospital services rather than primary care and community services, suggesting that the latter require further development (Barrett and Victor, Chapter 19). A survey among HIV-infected parents in the USA found that only half of them had told their children over the age of 4 years about their HIV status (Niebuhr et al., Chapter 20). An equal proportion said that they did not need help dealing with their children in relation to AIDS, and even more felt their children did not need to talk to anyone about HIV in the family. Siegel and Gorey (Chapter 21) examined the process of grieving among the uninfected children of mothers who die from AIDS, and adjustment to parental death in childhood. They emphasized the need to identify factors which increase the risk of pathological grief reactions in children. These papers highlight the multifaceted impact of HIV infection on parents and children, both immediate and long-term. While this book has attempted to be global in its approach, however, there is a noticeable absence of research on the family and HIV from Asian and Central/ South American countries, in marked contrast to the work that has been done in sub-Saharan Africa, the USA, the UK and Australia. Nonetheless, research findings gathered in one country may be transferable to other settings, although local conditions clearly need to be considered. The first volume of The Family and HIV emerged partly because HIV raised issues that had not been addressed for other illnesses, because of the associated stigma and potential risk of transmission. Paradoxically, the work around the family and HIV has in turn shed light on how illnesses other than HIV affect families and relationships. The ideas contained in this volume may therefore have wider application than was originally envisaged. We believe that the exchange of insights into HIV and other illnesses among family members, health workers and caregivers can only be mutually beneficial.

DISCLOSURE

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ONE

Self-Disclosure of HIV Infection among Men who Vary in Time since Seropositive Diagnosis and Symptomatic Status Gordon Mansergh, Gary Marks and Jane M. Simoni

INTRODUCTION Disclosing one's HIV-seropositive status to a significant other is a pivotal step toward gaining HIV-related social support. Social support decreases the effects of stress (Cohen and Wills, 1985; Wethington and Kessler, 1986; Cohen, 1988; Siegel and Krauss, 1991; Wills, 1991) and facilitates coping with illness (Kulik and Mahler, 1989; Dunkel-Schetter et al., 1992; King et al, 1993). Among persons with HIV disease, satisfaction with informational support lessens the effect of HIV-related physical symptoms on psychological distress (Hays et al., 1992), and integration in social networks is related to better psychological adjustment (Kelly et al., 1993). An additional benefit is that informing an intimate lover may lead to safer sexual practices that may stem the spread of disease (Marks et al., 1994). Previous studies have not addressed disclosure during the early periods following an HIV-positive diagnosis, which is a time of heightened distress and acute need for support. Specifically, what are the rates of disclosure to friends, intimate lovers, and family members among recently diagnosed individuals (i.e. those who have known about their seropositive status only a few months)? Past reports have not clarified this issue because disclosure prevalence rates were calculated across entire samples of respondents who varied considerably in length of time since initial diagnosis (Marks et al., 1992; Hays et al., 1993; Mason et al., 1995; Simoni et al., 1995). Further, what are the rates of disclosure beyond the first few months, and do these rates differ for persons with asymptomatic versus symptomatic disease? Symptomatic status is important to consider because emerging symptoms may heighten anxiety and increase need for social support, which may motivate disclosure or render it unavoidable. Studies have shown that length of time since

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HIV diagnosis correlated positively with an aggregated disclosure index (i.e., proportion of significant others informed) and that symptomatic men had informed a greater number of persons than asymptomatic men (Hayes et al., 1992; Marks et al., 1992; Mason et al., 1995). These studies are limited, however, in that they do not provide data on disclosure prevalence rates for individuals at distinct time periods after diagnosis, examine the relationship between time since diagnosis and disclosure for individual target persons, or address whether the time-disclosure relationship differs for symptomatic versus asymptomatic persons. The present study addresses these issues by examining person-specific disclosure of HIV infection to significant others among groups of men who varied in time since initial HIV diagnosis and symptomatic status. This study also examines the interpersonal consequences of informing others. Although disclosure may be crucial to obtaining HIV-related social support, one risks personal rejection by disclosing a seropositive status (Kelly et al., 1987; Hays et al., 1993; Simoni et al., 1995). Expanding on the work of Hays et al. (1993), who assessed with a single item 'how helpful' significant others were following disclosure, we examined reactions of emotional support, withdrawal, and anger. We compared reactions rated by those who disclosed with reactions anticipated by those who had not disclosed their infection status. METHODS Sample Recruitment

The study was conducted at two HIV-outpatient clinics in Los Angeles, California, USA during 1991-1992. One clinic was part of a large healthmaintenance organization (HMO), and the other was part of a large public medical center. Bilingual research assistants, who were not personally familiar with the patients, were stationed at each clinic and trained to implement a standardized set of selection and recruitment procedures. They randomly selected one primary and two alternate patients for every 1-hour time block from each clinic's daily appointment schedule. Both men and women were selected; however, only data on men were included in this analysis because the limited sample of women restricted reliability. Individuals were recruited in the waiting area of the clinics. Alternates were approached if the primary patient did not keep his or her appointment or was ineligible. Only three individuals failed to meet the following eligibility criteria: HIV-seropositive for more than 2 months, English- or Spanish-speaking, at least 18 years of age, and judged by medical personnel to be physically and mentally able to provide reliable questionnaire responses. Of the eligible patients approached, 82% at the HMO clinic and 96% at the public clinic agreed to participate. Those who declined did not differ from study respondents in age, education, or ethnicity.

SELF-DISCLOSURE OF HIV INFECTION 5

Questionnaire Administration After providing written informed consent, respondents self-administered a confidential English or Spanish questionnaire in a private section of the clinic. Completed questionnaires were sealed in envelopes and deposited in a collection box. Respondents used five-digit identifiers which they created by choosing numbers from zero to nine at random. The identifiers were used to link questionnaires with information abstracted from medical charts. Measures Respondents reported the time since discovering they were HIV-seropositive (2-4, 5-12, 13-24, 25-48, > 49 months). These five time intervals were used in a cross-sectional analysis of the association between time since HIV diagnosis and disclosure. Respondents also indicated their current HIV status (asymptomatic, symptomatic, or AIDS) which was compared to diagnostic data abstracted from medical charts; agreement was obtained for approximately 80% of respondents. Self-reported diagnostic groups were used in the analyses. The men indicated (yes or no) whether they had disclosed their HIV infection to their mother, father, sister, brother, closest friend (either male or female), and intimate lover. If the target was not applicable (e.g., no intimate lover, mother deceased before respondent knew he was HIV-seropositive), the respondent was excluded from the analysis of that specific target. Additional analyses were performed with an overall disclosure index calculated as the percentage of applicable targets informed. To assess the emotional and interpersonal reactions of the mother, father, friend, and intimate lover to self-disclosure, we asked 'If your [target] knows that you have HIV, how has s/he reacted?' For each target, respondents rated on a scale from never (1) to always (4) the following reactions: provided emotional support, withdrew from you, became angry at you. We refer to these ratings as 'actual reactions' to disclosure. The men also indicated whether informed intimate lovers reacted by leaving them. If a target had not been informed of the respondent's seropositive status, then the respondent rated how he thought the target would react on these three dimensions if the target found out (i.e., 'anticipated reactions'). Using standard response formats, the men indicated their ethnicity, age, and education. Sexual orientation was assessed by asking: 'With whom do you usually have sex?' Those who responded 'men only' were grouped as homosexual; those who responded 'mostly men', 'men and women equally', or 'mostly women' were grouped as bisexual; and those who responded 'women only' were grouped as heterosexual. Statistical Analyses The prevalence of disclosure to each target was calculated separately for subgroups of respondents who differed in time since HIV diagnosis and

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symptomatic status. The cross-sectional association between time and disclosure was assessed with Mantel-Haenszel %2 tests (d.f. = 1) of linear trend. Two-tailed Fisher's exact tests were used to examine differences in disclosure rates between discrete groups. The independent effects of time and symptomatic status on disclosure were assessed with logistic regression models which adjusted for ethnicity, age, education, sexual orientation, and clinic site. Finally, mean-level differences between actual and anticipated reactions to disclosure were evaluated with between-groups analysis of variance (i.e., F test).

RESULTS Sample The analytic sample consisted of 684 men with complete data on sociodemographic and medical variables. Only eight men were deleted due to missing data. Approximately half of the men were from the HMO and half were from the public clinic. Overall, 42% were Latin American, 40% were white, 15% were African American, and 3% were of other ethnicities. One-third of the sample had a 2-year college degree or higher; median age was 36 years. Overall, 63% of the men were homosexual, 28% bisexual, and 9% heterosexual. Preliminary analyses revealed that homosexual and bisexual men had highly similar patterns of disclosure. Therefore, these two groups were pooled in the analysis (homosexual/bisexual versus heterosexual). Fewer than half (42%) of the men had symptomatic disease or AIDS, thus these two diagnostic groups were combined (symptomatic/AIDS versus asymptomatic). Respondents were distributed across the time intervals since HIV diagnosis as follows: 2-4 months, 12%; 5-12 months, 12%; 13-24 months, 17%; 25-48 months, 31%; > 49 months, 28%. Univariate Analyses Figure 1.1 displays the prevalence of disclosure to each significant other, stratified by time interval and diagnostic category. Most strikingly, the rate of disclosure to each target was higher among symptomatic than asymptomatic respondents in each time interval. To provide a general test of the differences, we pooled the time intervals for each target and then examined the association between symptomatic status and disclosure. Two-tailed Fisher's exact tests yielded significant differences (P < 0.001) in disclosure to mother (42% (128 out of 300) versus 67% (155 out of 231)), father (23% (55 out of 242) versus 48% (77 out of 161)), friend (73% (275 out of 378) versus 88% (238 out of 271)), sister (46% (146 out of 320) versus 64% (149 out of 232)), and brother (40% (129 out of 323) versus 60% (142 out of 235)). A diminished, although still significant, effect was found for intimate lover (86% (189 out of 219) versus 93% (146 out of 157); P < 0.05). Figure 1.1 also shows that, for each target, disclosure rates were considerably lower among recently diagnosed men than those diagnosed less recently. To test

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oc

OC

Figure 1.1 Rates of disclosure (%) to significant others by length of time (mn, months) since HIV-positive diagnosis and symptomatic status: • asymptomatic respondents; 0 respondents with symptomatic disease or AIDS

this effect, we pooled across symptomatic status within each time interval and then examined the linear relationship between time and disclosure for each target. Mantel-Haenszel %2 tests (d.f. = 1) demonstrated significant (P < 0.001) linear trends for disclosure to mother (19.65), father (16.86), friend (32.67), sister (21.18), and brother (23.41). The trend for intimate lover was not significant, due largely to a ceiling effect. Visual inspection of Figure 1.1 indicates that the trends appear to be stronger and more uniform among asymptomatic than symptomatic men. A second set of

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Mantel-Haenszel tests was conducted to examine this apparent effect. For asymptomatic men, there were highly significant (P < 0.001) linear trends for each target except intimate lover (again due to a ceiling effect). This picture was not as clear, however, for symptomatic men. Significant trends (P < 0.05) emerged only for disclosure to friend and brother; a marginal trend (P = 0.06) was found for mother. Thus, there appears to be a rather uniform unfolding of disclosure to significant others among asymptomatic persons, and a more irregular pattern among symptomatic persons due presumably to the effect of variably emerging symptoms on disclosure. Finally, the rates of disclosure differed across the six significant others (Figure 1.1). The differences were especially pronounced among the men who were recently diagnosed. Disclosure to intimate lovers and friends far exceeded disclosure to family members; very few respondents had informed their fathers. We refrained from conducting formal statistical comparisons of these disclosure rates, because some targets were applicable for some but not for other respondents. Multivariate Analyses To provide greater statistical control over potential confounding effects, we conducted a set of multivariate logistic regression analyses of target-specific disclosure. The model for each target contained the following variables entered into the equation simultaneously: diagnostic group (asymptomatic versus symptomatic/AIDS), time (five intervals), age (continuous), ethnicity (whites versus others), education (continuous), sexual orientation (homosexual/bisexual versus heterosexual), and clinic site (HMO versus public). In these controlled analyses, disclosure to each of the six targets was significantly more likely among symptomatic than asymptomatic men. The unstandardized regression coefficients (b) ranged from 0.23 (s.e. = 0.06; P < 0.001) to 0.38 (s.e. = 0.08; P < 0.001). Also, the likelihood of disclosure to each target (except intimate lover) increased with time since HIV diagnosis. The unstandardized coefficients ranged from b = 0.25 (s.e. = 0.07; P < 0.001) to 0.31 (s.e. = 0.08; P < 0.001). Two consistent effects were seen with respect to the sociodemographic variables. Disclosure was generally more likely among white men (versus others) and among those with more education. Age, sexual orientation, and clinic location showed no consistent association with disclosure. We conducted a second set of logistic regression models to examine whether time interacted with symptomatic status in predicting disclosure. For these analyses, an interaction term was added to the main effect model described above. Results indicated that the interaction term fell short of statistical significance for each disclosure target. Thus, although the patterns of disclosure across time show some apparent differences between asymptomatic and symptomatic men (Figure 1.1), the differences were not significant in multivariate analyses.

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Table 1.1 Percentage of respondents who had not disclosed their HIV-seropositive status to any of the six targets by length of time since HIV-positive diagnosis and symptomatic status. Time (months) since HIV-positive diagnosis (% (n/total)) Status Asymptomatic Symptomatic/AIDS

2-4

5-12

13-24

25-48

>49

20.7(12/58) 9.5(2/21)

21.7(13/60) 4.3(1/23)

6.7 (5/75) 2.3(1/44)

6.6(7/106) 2.9(3/103)

7.1 (7/98) 5.3 (5/94)

Index of Non-Disclosure of HIV Infection Using the overall disclosure index (i.e., proportion of applicable targets informed), we divided respondents into two groups: those who had withheld disclosure from each applicable target and those who had informed at least one target. Among those diagnosed in the previous 2-4 months, 21% of asymptomatic men had not informed any applicable target (Table 1.1). Approximately the same nondisclosure rate appeared among asymptomatic men diagnosed 5-12 months prior to the survey. These rates were considerably higher than the rates obtained for the other eight time-symptomatology subgroups. Results of two-tailed Fisher's exact tests demonstrated that the two most recent asymptomatic groups pooled (i.e., < 1 year since HIV diagnosis) differed significantly (P < 0.01) from each of the three longer-term asymptomatic and symptomatic groups (i.e., 13-24, 25-48, and > 49 months). The pooled asymptomatic group did not differ significantly from the two recent symptomatic groups (2-4 and 5-12 months) due primarily to small subgroup sample sizes. Consequences of Disclosure Respondents' ratings of how their intimate lover, friend, mother, and father reacted to disclosure were also examined. There were a few cases in which a target was informed by someone other than the respondent. These cases were omitted from the consequences analysis to provide a pure assessment of reactions to self-disclosure. Among the disclosers, we calculated the percentage who reported that the target never, sometimes, frequently, or always provided emotional support, withdrew, or became angry. The men generally reported favorable reactions to disclosure (Table 1.2). However, some important exceptions should be noted. First, fathers were reported to be emotionally supportive less often than mothers, friends, and intimate lovers. Second, fathers and intimate lovers (as opposed to mothers and friends) had a somewhat greater tendency to withdraw after they were informed. Third, intimate lovers were more frequently seen as becoming angry than the other three targets. Fourth, 10.4% of respondents reported that their intimate lovers left them after they were informed. We compared the actual reactions among those who had disclosed with the anticipated reactions with those who had not by calculating summary indices

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Table 1.2 Respondents' ratings of reactions of significant others to disclosure of HIV infection. Frequency of reaction (%) Reactions Provided emotional support Intimate lover Friend Mother Father Withdrew Intimate lover Friend Mother Father Became angry Intimate lover Friend Mother Father

Never

Sometimes

Frequently

Always

2.4 1.4 5.4 13.8

17.6 11.7 22.7 25.4

14.6 21.4 13.6 22.3

65.4 65.5 58.3 38.5

68.6 88.0 84.2 68.5

24.3 10.6 11.9 20.0

4.3 1.0 2.2 3.8

2.8 0.4 1.7 7.7

60.7 75.9 74.9 72.1

33.7 22.9 20.8 24.0

2.8 0.4 2.9 0.8

2.8 0.8 1.4 3.1

Sample sizes were 329 for intimate lover, 510 for friend, 279 for mother, and 130 for father. There were a few instances of missing data; thus, the number of subjects in this analysis was slightly smaller than the number of subjects who had informed a target.

separately for disclosers and non-disclosers. An index of actual reactions among disclosers was calculated by averaging the men's responses to the three dimensions separately for each target. The dimensions of withdrawal and anger were receded so that higher index scores reflected more favorable reactions. The internal reliability (alpha) for the three dimensions was 0.72 for mother, 0.77 for father, 0.75 for intimate lover, and 0.48 for friend. Indices of anticipated reactions among non-disclosers were created in a similar manner. Internal reliability ranged from 0.63 to 0.84. For each of the four targets, the actual reactions to disclosure were more favorable than the anticipated reactions rated by non-disclosers. Comparisons with F tests indicated that the mean differences were significant (P < 0.001) for friend (3.70 versus 3.30), intimate lover (3.51 versus 2.62), father (3.33 versus 2.79), and slightly attenuated for mother (3.56 versus 3.44; P < 0.05). Although mean actual reactions exceeded mean anticipated reactions, the latter fell above the midpoint of the scale (2.5) for each target. This indicates that even the nondisclosers anticipated relatively favorable consequences of disclosure.

DISCUSSION The findings revealed that a large percentage of men who were recently diagnosed with HIV infection disclosed their seropositive status to intimate lovers and friends. Fewer had informed their mothers, brothers, or sisters, and disclosure to fathers was extremely low. Analyses of five cross-sectional time intervals indicated that disclosure rates increased with time since HIV diagnosis. Also, the rates

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were clearly higher among men with symptomatic than asymptomatic disease. These results were obtained with a multi-ethnic sample of mainly homosexual and bisexual men who were visiting HIV-outpatient clinics in Los Angeles. Caution should be taken in generalizing the findings to other populations. One might argue that men in the five time intervals differed not only in time since HIV diagnosis but in other ways as well, which may have confounded the association between time and disclosure. While it is difficult to rule out all potential confounding factors, the association persisted in multiple regression analyses that were statistically controlled for several demographic and medical variables. Similar control was imposed in our analysis of the association between symptomatology and disclosure. However, we recognize the limitations of using cross-sectional methodology to investigate what is inherently a within-subjects process. Ultimately, longitudinal investigations are needed to fully illuminate the psychological and interpersonal dynamics of disclosure. Another limitation is that we cannot pinpoint exactly when a disclosure occurred after HIV diagnosis. For example, among those who tested HIVseropositive 1 year previously and reported that they had informed their mother, disclosure could have occurred at any time during that year. Despite this limitation, the study identified the proportion of men who had disclosed to a target by a particular time interval after diagnosis. Similarly, we were able to ascertain the proportion who had not disclosed to a target by a specific timepoint. This study has identified a potentially hidden group of HIV-seropositive persons who, although not currently suffering from physical symptoms of HIV disease, may be suffering socially and psychologically. We found that among those who had been diagnosed in the previous year, a much larger proportion of asymptomatic (21%) than symptomatic (