Women and AIDS Coping and Care AIDS Prevention and Mental Health SeriesEditors: David G. Ostrow, M.D., Ph.D., and Jeffrey A, Kelly, Ph.D. Medical College of Wisconsin Milwaukee, Wisconsin Methodological Issues in AIDS Behavioral Research Edited by David G. Ostrow, M.D., Ph.D., and Ronald C. Kessler, Ph.D. Preventing AIDS: Theories and Methods of Behavioral Interventions Edited by Ralph J. DiClemente, Ph.D., and John L. Peterson, Ph.D. Women and AIDS: Coping and Care Edited by Ann O’Leary, Ph.D., and Loretta Sweet Jemmott, R.N., Ph.D., F.A.A.N. Women at Risk: Issues in the Primary Prevention of AIDS Edited by Ann O’Leary, Ph.D., and Loretta Sweet Jemmott, R.N., Ph.D. AContinuationOrder Plan isavailablefor this series.Acontinuationorderwillbringdeliveryofeachnew volume immediately upon publication. Volumes are billed only upon actual shipment. For further informationpleasecontactthepublisher. Women and AIDS Coping and Care Edited by Ann O’Leary, Ph.D. Rutgers University, Busch Campus New Brunswick, New Jersey and Loretta Sweet Jemmott, R.N., Ph.D., F.A.A.N. University of Pennsylvania Philadelphia, Pennsylvania Kluwer Academic Publishers New York / Boston / Dordrecht / London / Moscow eBookISBN: 0-306-47140-X Print ISBN: 0-306-45258-8 ©2002 Kluwer Academic Publishers New York, Boston, Dordrecht, London, Moscow All rights reserved No part of this eBook may be reproduced or transmitted in any form or by any means, electronic, mechanical, recording, or otherwise, without written consent from the Publisher Created in the United States of America Visit Kluwer Online at: http://www.kluweronline.com and Kluwer's eBookstore at: http://www.ebooks.kluweronline.com Contributors Stacy N. Broun • 3609 Cedar Springs Road, Dallas, Texas 75219 Vivian Brown • PROTOTYPES, Culver City, California 90230 Michael Conard • Department of Architecture, Columbia University, New York, New York 10025 Helen L. Coons • The Health Federation of Philadelphia, Philadelphia, Penn- sylvania 19107 Anke A. Ehrhardt • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, and Department of Psychiatry, Columbia Univer- sity, New York, New York 10032 Kathleen A. Ethier • Department of Psychology, Yale University, New Ha- ven, Connecticut 06520-8205 Barbara Greenberg • Department of Epidemiology and Social Medicine, Montefiore Medical Center/Albert Einstein College of Medicine, Bronx, New York 10467 Jeannette R. Ickovics • Departments of Psychology and Internal Medicine, Yale University, New Haven, Connecticut 06520-8205 John B. Jemmott III • Department of Psychology, Princeton University, Princeton, New Jersey 08554 Sharon Rae Jenkins • Department of Psychology, University of North Texas, Denton, Texas 76203-6587 Claude Ann Mellins • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, and Department of Psychiatry, Columbia Univer- sity, New York, New York 10032 Sutherland Miller • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Columbia University, New York, New York, 10032 v vi Contributors Suzanne Miller • Division of Population Science, Fox Chase Cancer Center, Philadelphia, Pennsylvania 19107 Janet S. Moore • Division of HIV/AIDS Prevention, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia 30333 Debra A. Murphy • Department of Psychiatry, Division of Social and Com- munity Psychiatry, University of California, LosAngeles, California 90024 Lucile Newman • HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute, New York, New York 10032; and Department of Community Health, Brown University, Providence, Rhode Island 02912 Judith Rodin • Departments of Psychology and Internal Medicine, Yale Uni- versity, New Haven, Connecticut 06520-8205; present address: Office of the President, 121 College Hall, University of Pennsylvania, Philadelphia, Pennsylva- nia 19104-6380 Mary Jane Rotheram-Borus • Department of Psychiatry, Division of Social and Community Psychiatry, University of California, Los Angeles, California 90024 Paula Schuman • Division of Infectious Diseases, Department of Internal Medicine, Wayne State University School of Medicine, Detroit, Michigan 48201 Dawn K. Smith • Division of HIV/AIDS Prevention, National Center for HIV, STD, and TB Prevention, Centers for Disease Control and Prevention, Atlanta, Georgia 30333 Liza Solomon • Department of Epidemiology, School of Hygiene and Public Health, Johns Hopkins University, Baltimore, Maryland 21205 Michael Stein • Division of General Internal Medicine, Rhode Island Hospi- tal, Providence, Rhode Island 02903 Dora Warren • Division of Reproductive Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Pre- vention, Atlanta, Georgia 30333 Gloria Weissman • Health Resources and Services Administration, Rockville, Maryland 20857 Preface Women were among the first documented cases of AIDS (Corea, 1992; Shilts, 1987), and have continued to become infected, develop AIDS, and die, throughout the course of this pandemic. Women have consistently constituted more than half of those infected with HIV globally, while in the United States their representation among those struck by AIDS has been increasing dramatically in recent years; more new infections occur among women than men at the present time. However, until recently, they have received little attention in research, service, or policy efforts (Corea, 1992). Public discourse about women with HIV/AIDS has often been stigmatizing, painting them as “vectors” of infection to men and children, and ignoring their own health concerns and well-being. However, there has been growing recognition of the fact that HIV and AIDS affect women in many unique ways, medically, psychologically, and socially. This book is an effort to bring together findings from research studies, both recently completed and ongoing; insights from those who have been providing health and mental health services to HIV-infected women in communities; and policy recom- mendations from specialists in women and HIV infection. Some of the authors have been pioneers in their work with women affected by HIV, others are eminent researchers in health, women’s studies, and HIV/AIDS. Each chapter in this volume provides a perspective unique to the topic and the orientation of its authors. While there is, inevitably, some overlap among the issues discussed by different authors, we believe that each chapter provides its own way of examining its subject. The first chapter provides a comprehensive review of the epidemiology, disease processes, and treatment of AIDS in women. It will serve as a useful resource for the health care provider—as up to date as it is possible to be in published material—and will also bring the medical background necessary for understanding some of the psychosocial aspects discussed in other chapters to those unfamiliar with biomedical aspects of HIV. The second chapter, by Jenkins and Coons, discusses stress and coping processes relevant to HIV-infected women’s lives. Unfortunately, there is a pau- city of high-quality, available research on these issues; however, the authors present a discussion of the context of HIV in the lives of the disadvantaged women it disproportionately affects; a qualitative description of the types of stresses that vii viii Preface accompany each stage in the course of HIV disease in women; and a review of some related research literatures, such as those concerning women’s adjustment to chronic and terminal illness generally and AIDS stress and coping research in other populations. This chapter will stimulate many ideas for research among readers interested in advancing the still-nascent field of women’s adaptation to HIV/AIDS. Adolescent women, a group greatly affected by HIV/AIDS, are the focus of the third chapter. After reviewing the nature and scope of the problem of HIV in- fection among adolescent women, Rotheram-Borus and colleagues describe their ongoing research in which they have developed and are delivering a psychosocial intervention for HIV-infected youth. The chapter outlines the topic areas and skill domains addressed in the multifaceted intervention; these include reducing sexual behavior that causes risk of transmission, avoiding substance use, developing “resiliency,” and enhancing quality of life. Access to needed physical and mental health care services is problematic for many of the disadvantaged women most affected by HIV. However, for the HIV- infected woman who is addicted to drugs, these are more frequently compounded by homelessness, dire concerns about maintaining or regaining custody of chil- dren, social isolation and alienation, and vulnerability to violence. Further, their health is additionally compromised by the use of drugs, both present and past. Accessing drug treatment services—for many the only viable way to reduce HIV risk—is more difficult for HIV-infected women than either uninfected women or other infected populations. The chapter by Weissman and Brown discusses these issues in the context of a large national HRSA/NIDA research demonstration project that was directed by Dr. Weissman. Mellins and colleagues present results of a qualitative study of the structures of families affected by pediatric AIDS, demonstrating the great complexity of configurations that occur among these families. They propose the term “selective kin” to refer to all individuals central to the well-being of children and their caregivers. Family structure is but one aspect of the complexity and variability that make it difficult to conduct psychosocial AIDS research and that make interpreta- tion of findings problematic; others include the heterogeneity of disease processes and the varying cultural, ethnic, and behavioral backgrounds of those affected. This chapter also describes stressors reported by participants and policy implica- tions of their proposed redefinition of family. Stacy Broun’s chapter is a moving and inspiring testament to the strength of women with HIV/AIDS and to the value—to both parties—of the provision of mental health services to them. It is based on her many years of experience in this role, and will be particularly useful to anyone who engages in counseling, advo- cacy, or friendship to women with AIDS. It also personalizes many of the issues discussed by Jenkins and Coons. Challenges faced by women at different stages in the disease course are discussed and include antibody testing, behavioral change, treatment decisions, and rational suicide. Preface ix Jemmott and Miller present a comprehensive review of a topic that has been of central concern to feminists throughout the AIDS epidemic: reproductive decision-making by HIV-infected women (Amaro, 1993; Arras, 1990). While many such women desire pregnancy, for a variety of reasons—some directly related to their enhanced awareness of their mortality—historically they have been stigmatized and pressured into pregnancy termination (Arras, 1990; Corea, 1992) despite the fact that most children are born uninfected. The recent finding that prenatal use of the antiviral drug zidovudine brings the transmission rate down to eight percent has resulted in a recommendation for universal antibody testing of pregnant women by the Centers for Disease Control and Prevention (CDC), and has alleviated concerns about coercion. This chapter reviews empirical data regarding the relative frequencies of pregnancy and pregnancy termination among women, using meta-analysis to demonstrate that HIV+ women do terminate pregnancies more often than HIV– women. The authors also present a psycho- logical model for reproductive decision making by HIV-infected women. The CDC’s HIV Epidemiology Research (HER) Study is a large-scale longi- tudinal investigation of women infected with HIV and a comparison group of HIV– women. The chapter by Smith, Warren, and colleagues describes the study design and participants along with some early results from the biomedical, health care, behavioral, and psychosocial components of the study. This effort, along with the closely coordinated NIH/NIAID-funded sister study, the Women’s HIV Inter- agency Study, are beginning to provide the first substantive empirical data regard- ing issues discussed throughout this volume. The final chapter, by Ethier, Ickovics, and Rodin, highlights some key aspects of current public policy as they affect women with HIV/AIDS, and makes recom- mendations for policy modifications to meet women’s unique needs. HIV preven- tion, counseling and testing, partner notification, access to care, and women’s inclusion in research are among the topics considered. The potential costs and benefits of numerous policy issues, many of them highly controversial, will be extremely useful for those readers who are in positions to inform and guide policy decisions and will constitute provocative reading for anyone interested in women’s health, HIV/AIDS, or the social and philosophical underpinnings of public policy formation. The AIDS epidemic in the United States and elsewhere has unfolded against a sociopolitical backdrop of disenfranchisement of the poor, the feminization of poverty, and stigmatization of AIDS and those who suffer its consequences. This volume goes to press at a time when the victims of poverty are more and more often blamed for their condition, yet we live in a society that fails to provide oppor- tunities for disadvantaged men and women, especially those of minority ethnicity, to be adequately educated and to gain dignified employment and ability to contrib- ute to society that every human being desires. Poverty and racism are major determinants of health generally (Adler, Boyce, Chesney, Folkman, & Syme,