AIDS: Women, Drugs and Social Care: Women, Drugs & Social Care (Social Aspects of Aids Series, Vol 1)

AIDS:

Women, Drugs and Social Care

Social Aspects of AIDS Series Editor: Peter Aggleton Goldsmiths’ College, University of London AIDS is not simply a concern for scientists, doctors and medical researchers, it has important social dimensions too. These include cultural, individual and media responses to HIV/AIDS, stimatization and discrimination, perceptions of risk, and issues to do with counselling, care and health promotion. This new series of books brings together work from many disciplines including psychology, sociology, cultural and media studies, anthropology, education and history. Many of the titles offer insight into contemporary research priorities and identify some of the opportunities open to those involved in care and health promotion. The series will be of interest to the general reader, those involved in education and social research, as well as scientific and medical researchers who want to examine the social aspects of AIDS. Editorial Advisory Board: Dominic Abrams, University of Kent at Canterbury, UK Dennis Altman, La Trobe University, Australia Maxine Ankrah, Makerere University, Uganda Mildred Blaxter, University of East Anglia, UK Manuel Caballo, Work Health Organization Judith Cohen, University of California San Francisco, USA Anthony Coxon, University of Essex, UK Peter Davies, University of Essex, UK Gary Dowsett, Macquarie University, Australia Jan Grover, Oakland, California, USA Graham Hart, University and Middlesex School of Medicine, London, UK Mukesh Kapila, Overseas Development Administration, UK Hans Moerkerk, National Commission on AIDS Control, Amsterdam, Netherlands Cindy Patton, Temple University, USA Diane Richardson, University of Sheffield, UK Werasit Sittitrai, Chulalongkorn University, Thailand Ron Stall, University of California San Francisco, USA Robert Tielman, University of Utrecht, Netherlands

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Simon Watney, London, UK Jeffrey Weeks, University of the West of England, Bristol

AIDS: Women, Drugs and Social Care Edited by

Nicholas Dorn Sheila Henderson Nigel South

Falmer Press (A member of the Taylor & Francis Group) London • Washington, DC

UK The Falmer Press, 4 John St., London WC 1N 2ET USA The Falmer Press, Taylor & Francis Inc., 1900 Frost Road, Suite 101, Bristol, PA 19007 This edition published in the Taylor & Francis e-Library, 2005. “To purchase your own copy of this or any of Taylor & Francis or Routledge’s collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk.” © Selection and editorial material copyright Nicholas Dorn, Sheila Henderson and Nigel South 1992 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 permission in writing from the Publisher. First published 1992. British Library Cataloguing in Publication Data AIDS: women, drugs and social care.—(Social aspects of AIDS, v. 1). 1. Women, AIDS. Psychosocial aspects I. Dorn, Nicholas II. Henderson, Sheila III. South, Nigel 362. 169792 Library of Congress Cataloguing-in-Publication Data are available on request ISBN 0-203-97589-8 Master e-book ISBN

ISBN 1-85000-873-6 (Print Edition) ISBN 1-85000-874-4 pbk

Contents

Series Editor’s Preface

viii

Acknowledgments

ix

Chapter 1

Introduction: The Research in Context Nicholas DornSheila HendersonNigel South

1

Chapter 2

Living with the Virus: Perspectives from HIVPositive Women in London Sheila Henderson

7

Chapter 3

Responding in a Crisis: Perspectives on HIV, Drugs and Women’s Needs from Edinburgh Valerie Morrison

25

Chapter 4

Drugs, HIV and Ireland: Responses to Women in Dublin Shane ButlerMarguerite Woods

43

Chapter 5

‘Tempered Optimism’: Perspectives from Professional and Voluntary Carers in Newcastle upon Tyne Malcolm ColledgeSandy Maddison

59

Chapter 6

‘It Came from Outer Space!’: Perspectives from the General Population and from Generic Health and Welfare Professionals in England Sally HainPaul LottRoger Marsden (NOP Market Research Ltd.)

73

Chapter 7

Conclusion: Progress, Prospects and Possibilities Nicholas DornSheila HendersonNigel South

93

Bibliography

101

vii

Notes on Contributors

105

Index

111

Series Editor’s Preface

The advent of HIV disease has created new challenges for existing systems of health and social care provision whilst highlighting old deficiencies. In particular, it has signalled the need for services which are responsive to the needs of different client groups. Drawing upon interview data collected in several locations, this book seeks to document aspects of women’s experience of HIV disease. It focuses upon their encounters with social services and with the health care system, upon their experiences as carers, and upon their personal support needs. It also identifies some of the more positive ways in which women, individually and collectively, have responded to the epidemic. The accounts it contains are both candid and outspoken. They identify in no uncertain terms the various ways in which HIV disease has impacted upon women’s lives and experiences. The analysis offered is sure to be of value to policy makers and practitioners alike. Peter Aggleton Goldsmiths’ College, University of London

Acknowledgments

The work reported upon here was made possible by a grant from the Department of Health AIDS Unit. The editors are most grateful to the Department for that grant, which enabled us to carry out and subcontract the research and to follow up some of the implications in practical ways, including preparation and publication of a booklet available from the Institute for the Study of Drug Dependence, Women, HIV, Drugs: Practical Issues (Henderson, 1990). We were very pleased to have the opportunity to work with colleagues, throughout Britain and in Ireland, whose work appears here—and some whose work is not directly represented, but helped to shape our thinking. Our thanks go to Jane McLoughlin at the Drugs Advice and Information Service in Brighton, Sarah Jones and Robert Power at REPORT in Riverside Health Authority in London, Andrew Bennett at the Merseyside Drugs Training and Information Centre, Isobel Freeman, Moira Paton and Avril Taylor at Strathclyde Social Work Department, Kamlesh Patel at the Bridge Project in Bradford and Joy Awiah at DASH (Drugs Advice Service, Haringey, north London), who recruited people for and accommodated group discussions. Karim Murji and Jasper Woodcock made helpful comments on parts of the manuscript. Finally, we most sincerely thank all those who took part in the group discussions and individual interviews at all stages of the research in 1989—199 people in all. Sheila Henderson would like to thank the HIV-positive women who contributed to discussions and all the women affected by the virus who have since that time shaped her perspectives professionally and personally. Valerie Morrison is grateful to the head of the Alcohol Research group, Dr Martin Plant, for enabling her to take time out to carry out this work, and to Dr Moira Plant for her constructive comments on the interpretation of the group discussions. Opinions expressed within the

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chapter are those of the individuals who took part in the discussion groups and their honesty and clarity are gratefully acknowledged. Thanks are also due to Mrs Val Mannings and Mrs Janis Nichol who gave their time to processing several very messy drafts of this chapter over the past year. Shane Butler and Marguerite Woods would like to thank all those who participated in the research in Dublin. Malcolm Colledge and Sandy Maddison would like to especially thank Rita Bell, Senior Lecturer in District Nursing and Kath Johnson, Lecturer in Health Visiting at Newcastle upon Tyne Polytechnic for their assistance in conducting the interviews. They would also like to thank respondents from Newcastle General Hospital, the Royal Victoria Infirmary, the Community Support Centre, St Nicholas Hospital, the Regional Health Authority and the Health Education Unit. They are also indebted to Body Positive, North East for attendance at the meeting. Last but most important of all their thanks go to those HIV-positive men and women who agreed to attend the meetings and make a most valuable contribution to the preparation of this chapter. NOP gratefully acknowledge all the members of the public and professionals who took part anonymously in their group discussions.

Chapter 1 Introduction: The Research in Context Nicholas Dorn, Sheila Henderson and Nigel South

The short programme of research reported in these pages and carried out in 19891 was conceived at a time when—despite mounting evidence that HIV/AIDS was an important issue for heterosexual women and men —the image of HIV/AIDS uppermost in the mind of the British public was still predominantly associated with gay men. The picture of HIV/ AIDS worldwide, even at that time, suggested otherwise, as most dramatically illustrated on the international stage by the epidemic in the African continent, which indicated that the virus was very much a sexual, medical, economic and social threat to heterosexuals—men and women alike. Meanwhile, US statistics suggested that AIDS was the leading cause of death in New York City among women from 20–40 years of age. In Britain, figures up to the end of March 1989 showed sixty-eight women with AIDS (@3 per cent of a total of 2,192) and 614 women who were HIV-positive (@7 per cent of a total of 8,638 people with HIV). Though comparatively small, these numbers both represented the potential shape of things to come in the epidemic and registered a growing set of needs perhaps substantively different from those currently being addressed in the HIV context. Very little social research and very few service providers had addressed these needs and women with the virus in the UK were still finding themselves largely invisible when it came to appropriate HIV-related service delivery, general public and social policy responses.2 Given the situation, three things seemed clear to the editors: that the needs of women in the HIV context would, out of sad necessity, need to rise on the public agenda, that these needs were likely to differ in some ways from the needs of men with the virus and that social research had an important role to play in informing appropriate responses at the level of both service delivery and prevention. The Women, Risks and AIDS Project (Holland et al., 1990a, 1990b; Ramazanoglu, 1990; Thomson and Scott, 1990, 1991), which began in 1988 and still continues, was

2 AIDS: WOMEN, DRUGS AND SOCIAL CARE

significant in seeking to contribute to HIV prevention strategy by investigating the sociological complexities of young women’s sexuality. The editors, on a much smaller scale, sought to contribute to the process of developing appropriate social care responses to women with the virus via a preliminary insight into women’s needs as viewed by a range of people actually or potentially affected (see note 1). At the time, the majority of women with the virus in this country had become infected through injecting drug use—either directly through using infected equipment themselves or indirectly through unprotected sex with drug-injecting partners. It therefore seemed fitting to address the social care needs of women involved in illicit drug cultures. While this question had been addressed prior to the advent of HIV by some drug workers and researchers in the late 1970s and early 1980s (e.g. Perry, 1980; Gomberg, 1982; Cuskey, 1982) with the concrete result of DAWN (Drugs, Alcohol, Women, Nationally), both the profile of (continuing) work with women drug users and the literature had grown very little during the 1980s (for a recent study and overview of this literature see Taylor, 1991). An exception at the policy level (preceding the major rethink of drug services precipitated by HIV/AIDS) figured in the Advisory Council on the Misuse of Drugs 1984 ‘Prevention’ report (Advisory Council on the Misuse of Drugs, 1984): Researchers and policy makers have often assumed that hypotheses and policies drawn up in response to male drug misuse are equally applicable to women…the women’s movement has drawn attention to the need to conceptualise ‘social problems’ (such as the drug problem) from the point of view of women’s interest and position in society…we consider that this literature raises important issues not adequately dealt with in earlier, male-centred work (p. 23). The policy response to HIV/AIDS among drug users brought with it a further official spur to consider the needs of women drug users. The Advisory Council on the Misuse of Drugs 1988 report (Advisory Council on the Misuse of Drugs, 1988), which warned that HIV was overtaking illicit drug use as a danger to public health, lent official support to a shift in drug treatment policy and practice away from purely abstinence goals and towards an emphasis upon reducing harm from drug use. The 1989 report recognized that ‘Drug services should review their policies to ensure they are receptive to the needs of women’ (Advisory Council on the Misuse of Drugs, 1989, p. 41) as an important

THE RESEARCH IN CONTEXT 3

part of the response to HIV. Since that time, important initiatives have attempted to address women drug users (Henderson, 1990) but the public profile and scope of such work have far to go, not least in addressing the specific and differing needs of women from black communities and lesbians. Focusing upon the social care needs of women often involves striking another seam of care, the less public and often invisible range of tasks conducted by many women in the home and community. The editors considered that women within illicit drug cultures would be no exception to this role and that a partner with HIV would add to what the feminist sociological literature on informal caring has termed women’s ‘double burden of care’ (e.g. Groves and Finch, 1983; Glendinning, 1983). The wider context added a sharper edge to this consideration in that the 1980s had seen the ongoing debate about community care take new shape amid policies which dramatically altered the balance between public and private responsibility for health and welfare—with major implications for the informal caring roles played by many women. About the Book The reader may find some further contextualization of the contributions which follow useful. The contents of this volume are based upon reports from some of the cities in which our study was conducted. They trace a path through the highly variable societal and professional reactions to women, HIV and drugs in the late 1980s. Beginning with an overview of some of the issues as expressed by women living with the virus, they move from those professional and lay carers relatively experienced in responding in constructive and supportive ways, through those still struggling to overcome their initial stereotypes, fears and lack of knowledge, to those who have no direct experience. First, the chapter by Sheila Henderson focuses upon the issues as reported by HIV-positive women in London in early 1989. The problems facing them are given special focus—isolation, stigmatization (of self and children), coping with their own and others’ fears, making decisions about pregnancy, continuing to care for themselves, their children and any male partner, and trying to pull together resources. Some attempt was made to include women with the virus in most discussion groups but at the time of the study, it (understandably) proved difficult for regional and other national researchers to encourage them to come forward and speak about their needs in a group setting. While some researchers dealt with this situation by interviewing women individually,

4 AIDS: WOMEN, DRUGS AND SOCIAL CARE

the overall effect was such that representation of their views and experiences in other chapters is patchy. In London, the more extensive infrastructure around HIV and AIDS made such an exercise more possible. It is clear that while HIV has made an impact worldwide, there have been considerable national variations in the way it is perceived which have tended to reflect the pattern of infection. The contribution from Shane Butler and Marguerite Woods (chapter 4) demonstrates how very particular cultural and religious factors in another country in close geographical proximity to Great Britain can shape perceptions of and responses to HIV differently. It is also clear that, while a wave of sentiment about HIV has been articulated within Britain at a national level, there were considerable regional variations depending upon local circumstances, moral climates and campaigns. The existence of a local drug scene involving much sharing of unsterilized injection equipment has been one of those factors which, in cities such as Edinburgh, has provided a distinct profile of HIV problems. Because of the relatively high chances of transmission of the virus to a woman who may both use her partner’s injection equipment and have unsafe sex, it is in such centres that rates of HIV among women climbed fastest in the 1980s. Two of the following chapters lend different dimensions to this regionalized recognition of the needs around women, drugs and HIV, highlighting the concerns of professionals, volunteers, family members and HIV-positive women in these cities in early 1989. The work of Val Morrison in Edinburgh (chapter 3) adds a new dimension to the well-publicized Edinburgh experience. Additionally, Malcolm Colledge and Sandy Maddison (chapter 5) describe the response in the city of Newcastle in north-east England where, the researchers believed, there may have been a not entirely recognized expansion of HIV transmission by way of sharing injection equipment. Common to all these accounts are concerns with women’s access to services, the question of having children, and the general need for better information at all levels. Those professionals, voluntary workers and family members who have involvement with HIV-positive women demonstrated an ability to draw upon that direct experience and hence be less reliant upon the information and imagery conveyed by the mass media. Not so those members of the general population who have no such contact. Their judgments and opinions would appear to be more directly shaped by public images. Even members of the health and caring professions were often unsure of their feelings and the facts in respect of HIV if they had

THE RESEARCH IN CONTEXT 5

no direct experience of caring for people with HIV. These less informed responses are discussed in chapter 6, an edited report based on market research carried out by NOP Market Research Ltd. In various sites in the Southeast and Midlands of England, NOP conducted four group discussions with members of the general public, one with lay carers (by default, rather than design, all female) and four with professionals—all relatively unfamiliar with people with HIV. As the NOP material shows, the responses of men in the general population to the hypothetical prospect of a female member of their family being HIV-positive ranged from initial incredulity (‘my wife is not a gay man, so how can she have AIDS?’), through to helplessness (‘what can I do, apart from drive her to and from the hospital?’) and outright rejection. Many of these respondents had difficulty in sustaining a discussion on the needs of women with HIV. This is hardly surprising since there clearly has been resistance to the idea that HIV and AIDS could be other than a problem affecting gay and bisexual men. Public understandings of HIV/AIDS have arguably changed since this work was conducted. Having moved through a period where the ‘myth of heterosexual AIDS’ (re)gained significant public attention,3 the messages about HIV/AIDS have become more mixed. Equally, the quality of services for women with the virus has improved to some degree (see chapter 7). Regrettably, these developments parallel an increase in the numbers of women becoming infected. Reported HIV figures to the end of June 1991 showed that out of a total of 4,758 people with AIDS, 266 were women—an increase of 93 per cent for the year—and that there were 1,807 women with HIV out of a total of 15, 837. These reports have always been recognized as underestimates and recent anonymized screening surveys (Communicable Disease Report, 1991) have painted a more disturbing picture. In Inner London the rates of seropositivity among sexually active women would appear to be doubling every twelve months and 1 in 500 pregnant women are infected. It is much clearer now than when the research reported here was conducted that the needs of women, both in terms of prevention and service delivery, should be considered seriously in the context of HIV/AIDS. It is the hope of the editors that this collection will make some small contribution to the advancement of that process.

6 AIDS: WOMEN, DRUGS AND SOCIAL CARE

Notes 1 Conducted in seventeen locations in Britain and in Dublin, Ireland. In extended group discussions and individual interviews, a wide variety of people (199 in all) talked about their perspectives on women, HIV, drugs and ‘care’. The research involved members of the general population, professionals and lay carers without direct experience of HIV issues, those with some years of experience, and HIV-positive women themselves. HIV-positive women were always seen individually or in women-only groups by a woman interviewer. There was a loose structure for the interviews and group discussions. 2 The Scottish experience was a significant exception in that, in the context of the Edinburgh experience where drug-related HIV infection was much higher than elsewhere in Britain, many more women were infected. 3 Headlines such as ‘AIDS—The Hoax of the Century’ (The Sun, 18 November 1989) were typical of many in the wake of statements publicly attributed to Lord Kilbracken (a member of the All Party Parliamentary Group on AIDS whose previous eccentric campaigns without the HIV ingredient had gone unnoticed) to the effect that ‘straight sex cannot give you AIDS’. This revival was boosted by coverage of Michael Fumento’s book, The Myth of Heterosexual AIDS (1990, Basic Books) particularly in the Sunday Times.

Chapter 2 Living with the Virus: Perspectives from HIV-Positive Women in London Sheila Henderson

Introduction 1990 saw the World Health Organization’s (WHO) World AIDS Day and the international array of accompanying events and activities focus on women and AIDS. In publicity material following up this theme (WHO Global Programme on AIDS, 1990) the WHO estimated that at least eight million people were infected with HIV at that time, approximately three million of whom were women. It also predicted a cumulative total of over 600,000 women with AIDS by the end of 1992 and equal numbers of men and women with AIDS by the year 2000. WHO (WHO Features, 1990) also put AIDS as the leading cause of death for women aged between 20 and 40 years living in major cities of the Sub-Saharan region, Western Europe and the Americas. This WHO initiative to draw world attention to the impact of HIV/AIDS upon women—those infected and those involved at all levels of care—served as a prompt for policy makers and service providers and was welcomed by many who had been involved in relatively long-standing and committed activity (for Britain, see London Strategic Policy Unit, 1987) on the ground through to the official level. Its long term effect, however, has been difficult to gauge not least because there appears to have been little evaluation of local events and activities on the day, never mind their impact on policy infrastructures locally, nationally or internationally. Turning to the national context, 1990 in Britain, although marked by ongoing attempts to explode ‘the myth of heterosexual AIDS’, also saw some revival of flagging AIDS coverage in popular magazines (Take a Break, 5 May 1990; Hello! 28 April 1990; Cosmopolitan, May 1990; 19, 12 May 1990; Vogue, April 1990; Company, May 1990), a growth in HIV posts with some remit for women, and conferences and meetings on the

8 LIVING WITH THE VIRUS

topic of women and AIDS. Weary readers of the Evening Standard were greeted in May by the headline ‘AIDS: Women in the Front Line. Diana hears of epidemic’s second wave’ (Evening Standard, 16 May 1990, p. 15), while the following day, The Independent readers mused over ‘Why condoms are a woman’s best friend’ (The Independent, 17 May, 1990, p. 16) and learnt that ‘Women infected with AIDS have doubled in last year’ (The Independent, 17 May 1990, p. 8). A number of loose networks and groupings, formed with the aim of sharing experience and information among women affected by the virus, have also emerged. Local support groups for HIV-positive women are on the increase, although Positively Women based in London is the only national service for HIVpositive women. There has been some move among local and health authorities towards developing prevention and service strategies for women with regard to HIV and some drug agencies are attempting to improve their services for women (Henderson, 1990). Surveys of HIV-related service development for women are a growing phenomenon (Rights and Humanity, 1989; DAWN, 1992; Ryan, 1991). Pictures of the impact of HIV upon the lives of British women are still, however, very sketchy. What follows represents an initial attempt to fill in some important details—which only women living with the virus can describe. It is directly based upon material gathered in the context of one extended depth interview and one wide-ranging group discussion with HIV-positive women who had some (generally past) connection with illicit drug use. It is also, however, framed by perspectives developed during close to a year and a half of involvement with women and HIV issues in London and Scotland. The interview and discussion group (six women) were both semistructured, followed a loose topic guide partly reflected in the headings below and were of approximately two and a half hours duration. The group included some participants who had only recently moved to London, after discovering their HIVpositive status. The majority had some connection with support agencies of differing kinds, giving them contact with other women living with the virus and shared experience upon which to draw. The Gender Dimensions of Living with the Virus Two principal themes emerged from the accounts of personal experience. First, the major impetus behind public service responses to

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women in the context of HIV had been a concern over the spread of infection via reproduction. This focus on women’s reproductive role was perceived to have been at the expense of a concern for the overall health of individual women. It also had not been accompanied by initiatives to meet the challenge of HIV in relevant services. Family planning, obstetrics and foster-care services appeared to be sadly underdeveloped in relation to HIV strategies and the general demise of family planning clinics was noted with some dismay. Second, where women’s sexuality outside of reproduction had received public attention, it had also been within a context where limiting the spread of HIV infection was prioritized over a concern for the well-being of women. The focus here had operated in such a way as to ‘outlaw’ signs of active sexuality in women—such as non-monogamy and selling sex—redrawing historically familiar lines of female respectability and deviance. Medical Experiences The HIV antibody testing procedure was a prime example where both these themes ran through personal stories. One woman reported receiving her positive test result from a doctor in a STD clinic in terms of the following request: Promise me you won’t get pregnant until I see you in 6 months time. Another woman in a similar context was asked by her doctor how many men she had slept with in the last three years. Upon receiving the answer (approximately ten) he told her she was disgusting and that she should turn to God. The sense of moral judgment was less acute in some experiences of posttest counselling but was associated by some respondents with what they felt to be unnecessary forms of official scrutiny—as the following account suggests: He asked me if I felt guilty—when I said no, he told me it was the right response. I felt like a text-book case. He must have only just finished his training. I was very angry at this point about everything. He asked me about my sex life and I didn’t want to talk to a total stranger. I felt HIV shouldn’t mean I should have to talk about intimate details…he gave me a lecture on what I should

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and shouldn’t do in bed. It was the last thing I wanted to think about at the time. The same respondents made a connection between this particular development and a much longer history of problematic relationships between women and the medical profession, citing the historically powerful role of the latter in defining ‘normal’ femininity well within the parameters of monogamous heterosexual sex and reproduction. The quality of service was not the only cause for concern in relation to health-care responses to HIV. Actual refusal or avoidance of routine service provision to people of known HIVpositive status by GPs and dentists was a common experience. I went along to the dentist and he was really nice to me—talking and all that—and as soon as he said do you have anything to tell me and I told him, he said ‘Come back’. I was sitting on the chair ready and he told me to go away and come back another day. The same with the GP. It put me off telling doctors, dentists, anything like that. I think that they should know but the way they treat people I don’t think they’re going to get many people that’ll tell. While this kind of response was a general experience for people with HIV and AIDS, others were more gender-specific. There were worrying reports of adverse responses in family planning services. One woman, for example, was suffering ill-health as a result. I’ve got a coil. I had it when I’d had my baby. It was causing me a lot of trouble, having a period a few times a month, really bad backache. So I got a letter to go to a clinic…when I told them I had HIV, they sent me home and I’ve been waiting now for months. There were also instances of ill-health resulting from symptoms of HIV being further complicated by problems caused by contraceptives which change/disrupt the menstrual cycle. Reproduction and Coping with Children Pregnancy was another gender-specific area which warranted unfavourable reports. The pressure from health professionals to terminate

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pregnancy in the context of known HIV-positive status was widely remarked upon. I had a termination about a year ago and I was getting pressure from doctors, health advisers, all the right people giving me the wrong sort of pressure I didn’t need. I’ve never agreed with terminations. I’d never have had one but I was getting a lot of pressure because I was an ex-user and I was positive. They told me I would have a child that was positive and I would go on to get AIDS. That brought up loads of fear in me because I don’t want to get any iller and didn’t want to pass it on to my child and then leave a child at the age of 2 or 3 without any parents. Informed choice in the event of pregnancy was seen as a much-needed option for HIV-positive women but also sadly lacking: I don’t feel I got any support, any information. I just got a few facts and figures on some research they’d done… No one actually came up and told me what I could do or where I could go. Accounts of childbirth afforded stories of ‘space suit’ treatment, physical isolation and acute ‘hazard’ treatment after the birth, followed by conspicuous maltreatment by healthcare staff in the domestic context— for example ‘gowning-up’ in the street prior to a home visit. Motherhood was a social status and identity which added further dimensions to HIV-related experience. Children were cause for increased service contact and an accompanying potential for experiencing bad practice. One mother reported coming under further medical scrutiny through her children starting at a new school. Having moved into the area to escape the harassment she had experienced in her previous neighbourhood when her HIV-positive status became known, she was quizzed by a doctor while accompanying her children to a medical at their new school. On learning her HIV status, the doctor clumsily proposed arranging the collection of her used sanitary towels. In addition to multiplying the possibilities for encountering dis-service, motherhood also added to the dimensions of fear, anxiety and loss for women. HIV-positive mothers felt great responsibility for the effects of informing their children. Decisionmaking could be complex and fraught. Choosing the right time to burden them with the responsibility of keeping quiet to avoid harassment, of facing the often dire consequences of public knowledge, or of fearing for their mother’s

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health and possible death was no simple and straightforward task. When illness made some kind of explanation essential, ways to tell young children about the nature of HIV and life’s uncertainty did not readily offer themselves. Fear and guilt complicated the situation when mothers suspected or believed that their child(ren) was/ were also infected. An infected partner complicated the issues even further. The responses of children also presented problems for mothers as the following experience illustrates: My daughter has talked a lot to friends, she does understand an awful lot.…my son, he’s a baby really, he called me an AIDS victim the other day… I caught him riding on the back of a bike along the main road. I called him in and he sat there looking at me and he said, ‘You AIDS victim’ just like that. I felt like really whacking him but he didn’t mean it, it’s just what he hears on the streets…he must have thought, ‘how can I get at her.’ The uncertainty over length of life expectancy was not only a cause for fear as to the future care of children but also provided an impetus for remaining well. My son’s 7. It’s ridiculous but I thought if I could live for another ten years, he’d be 17 then wouldn’t he and it’s not so bad…he’d be a man, he’d be able to stand on his own two feet. That makes me go on…they’re my babies. Nobody else is going to come in, I wouldn’t want anyone else to. The life-threatening but uncertain qualities of HIV also raised questions as to the nature of care arrangements for children during periods of illness and the possible death of mothers. The above account illustrates the strong feelings which can inform decisions. Taking account of the mother’s wishes to remain in control as long as possible and at the same time making the transition from her care to the care of others as smooth as possible for all concerned was a fraught area which, it was felt, had scarcely been addressed. The issue of confidentiality proved a particularly thorny one in relation to fostercare arrangements and the ethics involved in disclosing the HIV status of children. Prospective foster parents should be informed, it was felt, but at what stage and at what expense to the child were unresolved issues.

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Questions were also raised regarding the development of services in relation to children in school, where attitudes to HIV caused major difficulties. Again, confidentiality posed a threat to a comprehensive response. While the possible need for informing all those potentially concerned with the child—from the school nurse and dinner lady to head teachers—was acknowledged, the potential implications of this action for the child and family members evoked grave concern. Feminine Identity and Sexuality Questions to do with motherhood and identity in relation to HIV were not entirely confined to the experiences and concerns of women with children. A deep sense of loss was the initial response most widely reported by women upon receipt of an HIV-positive diagnosis. This loss was very much tied up with a sudden knee-jerk feeling that reproduction was no longer a possible option and was experienced even by women who had not previously given reproduction serious consideration. This frequent movement of motherhood to a central role in the definition of femininity in the context of HIV not only informs women’s emotional responses but also, as illustrated by other chapters in this volume, sets the limits for practicing safer sex within heterosexual relationships. Such practices can seem of little value in a context where having a child presents the only potential for a sense of personal achievement and purpose in life. One woman, who had no strong wish to have children, nonetheless referred to a link between pleasure and sex which carries the possibility of pregnancy. I was trained to believe the primary purpose of sex was to have a child and I still, whether I like it or not, believe that. It’s not a conscious thing, I find [safer] sex sometimes really hard to get into because I think what’s the point. I like it but you know…. However, several HIV-positive women felt the advent of HIV could actually spell progress for women on the sexuality front by giving permission for the large numbers of women who (according to sex surveys at least, Hite, 1989) prefer non-penetrative sex, to pursue their preferred practices. But doubt was also expressed as to the practical possibilities for pursuit of such pleasures in many heterosexual

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relationships—particularly where the sexual agenda is set and the overall balance of power within the relationship is held by men. Discussion turning on the subject of the diversity of sexual pleasure and identity enjoyed by women also encompassed lesbian relationships. The need to challenge the current status of lesbian sex as ‘no-risk’ sex was stated on the grounds that lesbian women are not exempt from practices such as needle-sharing, prostitution and from contact with sperm through reproductive sex and artificial insemination. Opinion veered toward safer sex education measures which carefully and sensitively balanced these concerns with the fact that lesbians had also experienced adverse public reactions because of the close connection between HIV and homosexuality in the public mind. Drugs and Images of Deviance It was common for women with the virus to experience being seen as promiscuous and/or in some way socially deviant, no matter what their lifestyle. Closely allied to this was the image of irresponsibility. Infection with the virus appears to equate with failure in the expected societal role for women as carers and moral guardians, but women who had injected drugs or had an injecting partner felt particularly condemned. They referred to a triple layer of stigma confronting them. First, the images of sexual deviance which cling to the whole topic of AIDS; second the association of injecting drug use with deviance and selfinflicted harm; and third the departure from sociallyprescribed behaviour worthy of the ‘good woman’ which close connection with the previous two factors still apparently signifies. Some women noted that, while intravenous drug use is generally viewed as social transgression, the transgression tended towards the exotic and contained an element of bravado when related to men, which it totally lacked with regard to women. The idea that women are going out and buying something illegal that changes their consciousness is considered immoral, wrong because women have to be sane, sober and sensible and keeping society together. A marked difference in attitude to the use of legal and illegal drug use was also reported. So, for example, in the context of the maternity ward —where the ‘unfit mother’ question might be expected to be sharpest— women with alcohol problems received better treatment than injecting

AIDS: WOMEN, DRUGS AND SOCIAL CARE 15

drug using mothers, whose babies came under much greater scrutiny from medical and social service staff. Generally, the experience of women perceived to have become infected through drug use was that they felt a greater sense of shame— taking the blame in upon themselves. Some felt that this sense of shame was also generated in the context of prostitution entered into as a means of funding their own or a partner’s drug use. Often addict women have been involved in prostitution and there’s quite a lot of deep shame about that. I’ve met rent boys who also have the same deep shame but somehow women…well it’s the whole thing that if you fuck around and you’re a guy you’re a stud—but with women it’s really not OK to be a whore. Concern particularly for younger women engaged in prostitution was voiced as a number of women felt that public concern over HIV had been articulated with only the clients of prostitutes in mind. It was widely reported that clients were offering larger sums of money for unsafe sex, thus posing a major threat to young people without organizational weight and experience behind them. In the words of one ex-user: If you’re living in London and 14 [or] 15, nowhere to live, at your most vulnerable, you rely on your pimp. You’re shit scared of him but you’ve got nowhere else to go. You’re scared that if you run off he’ll come and find you and beat you. And if they’re using, they can’t demand clean needles—if a guy is convinced that he’s not positive then he’s not going to let you have a clean needle. The same goes for condoms. Prostitution was not the only area where positions of dependence taken up by drug-using women in relations with men were cause for concern. Women who had been involved in injecting drug use emphasized the greater risks for women involved in (frequent) situations of reliance upon male partners to obtain and inject the drug—particularly the practice of sharing with and following a partner. Cases of women mutilating themselves while attempting to inject themselves when male partners were absent were cited to underline the level of dependence known to operate in some relationships.

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Women who had come off illegal drugs and then discovered they were HIV-positive were particularly sensitive to the irony of their situation. It’s a hell of a pressure, it can put you back on drugs. You’re not only battling to try and cope with this monster, as I call it, you’re also trying to battle to keep your head together to not slip back. Because when you’re using drugs, you don’t deal with pressure, that’s why you use drugs in the first place so that you’ve got an escape….and then you stop using drugs and you’ve got all this pressure. One woman also desribed contrasts between her desperate state prior to coming off and her lifestyle resulting from coming to terms with living with the virus. Before you go into the rehab, you’ve got to be really desperate. My choices were carry on using, get nicked, go to prison or be dead… and once you begin to accept you’ve got the virus a little bit, and you’ve got to look after yourself, get up and do your exercises—all this sort of shit…. I think the bottom line is none of us want to die, however hard it is. There are some times when it is so good to be clean and have all your mates around you. HIV-Positive Partners The women who participated in discussion of injecting drug use were mostly ex-users. They had all, in different ways, invested considerable personal effort into both coming off drugs and coming to terms with the virus. Aside from the additional concerns of caring for children, some women were also in a situation where they were also caring for an infected partner—although this aring work was not recognized as such unless the person cared-for was seriously ill and/or hospitalized. I don’t see myself as a carer, rather being in a relationship. My partner has been in hospital for the last four weeks so I’ve been a bit of a carer as well as a partner. These more overt aspects of caring had specific implications for HIVpositive women. Aside from worry over the health of the person cared-

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for, there was the added work-load and concern about money common to all such caring tasks. The practical side—trying to make sure they’ve got everything they need and there’s money as well because when your partner’s in hospital you have to buy things. HIV added the dimension of fear for future health scenarios for themselves. Every time you go into hospital, you confront the situation if your partner is on an HIV ward. There’s people dying and people lying there who can’t do a thing for themselves…for me, it’s like looking in a mirror, in maybe six months, a year, two years, five years, I don’t know, it’s very frightening. While we were in there two people actually died. Just actually trying to deal with all that and all the fears it brings up…well, supposing I get an illness that puts me in that position, and for the partner, well suppose he does get very bed-ridden, disabled in that way—am I going to be able to cope? At the same time, despite the fact that knowing their own HIV-positive status intensified the levels of fear and worry, some women considered this preferable to not being HIVpositive. I can’t imagine what it would be like having to care for someone if I wasn’t HIV-positive myself—I wouldn’t know that many people or have much to do with it. But being positive myself, I’ve been drawn right into it. The impact of HIV on the relationships of women participating had also provoked strong emotional responses. Where a male partner had received confirmation of HIV-positive status first, a great strain had been placed on the relationship in terms of the man’s behaviour. I’ve found it’s been a great strain on me, a great strain. I’ve been getting abuse from him that I don’t really deserve. A lot of his anger, frustration has been directed and I’ve been on the receiving end. He’s aware of it but I don’t feel there’s enough support and I feel there’s a lot of ignorance still around the matter.

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In terms of the focus of service provision, the female partner of an HIVpositive man can seem to be left out of the account. When we found out, I felt quite alienated in it, because there was a lot of help being offered to my partner because he was diagnosed positive and I was diagnosed negative….although I felt I needed it just as much. The jealousy and anger provoked by such a situation were particularly acute when the woman was convinced of her own HIV-positive status. You see, I knew I had to have it all along but it wasn’t showing. I was getting false negative results. Where I come from, I got two positive results, when I came here I got about eight negatives. I knew I had it three years ago because we’ve been together X years now and we do everything together—we use drugs together, have sex together, no condoms and all that. So if he had it, I definitely had it. In this situation, the woman greeted confirmation of her positive status with relief and went on to adopt the supportive role with greater willingness. I think it’s easier since I found out. It seemed that he was getting all the attention and I wasn’t, even though I knew I could have been. I felt a bit jealous even. Since I got my result back I’ve found it a lot easier to live with. I was even going to leave at one stage. Since I’ve got it as well, I feel like staying. However, not all women found themselves in a situation where they knew of the nature of their partner’s illness. A case was cited where a man’s wish not to disclose his HIV-positive status to his partner was honoured with the consequence that the woman learnt her own HIVpositive status only after she had nursed him through to death and subsequently discovered the cause. No participants felt that coping with the impact of HIV on their relationship was in any way a simple basis for uncomplicated ‘togetherness’, but rather a complex, difficult process requiring outside support.

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You’re still living with it the same as your partner but it’s hard to get through to him. You need support because what you do is you try and deal with it together and you can’t because there’s so much anger and that…you’ve got to offload it. The most usual means of offloading reported was through informal networks. But this was seen as problematic as a sole support structure— since the people involved tended to be in a similar situation and therefore overloaded themselves. However, while there was general consensus that more partners’ support groups were needed, not all experiences of attending such groups were favourable. When I went there—it was reality and it hit me and there’s a lot that I’d like to sit and talk about and be able to offlet to somebody but it wasn’t the type of place you could do. Care and Support Needs The overall emphasis among participants regarding the question of needs was upon building care around a positive perspective—giving women quality services and information in order to give them real choice. Flexible, consumer-led services in the community available on one site were considered an important element in achieving this. However, there was a good deal of pessimism as to the achievement of such goals in the current climate of health and social welfare policy in general and under the pre-dominance of men as consumers and often providers of HIV services in particular. Women wanted to see more accurate and simple information on how HIV affects women more widely available. Specific areas included: what to expect in terms of symptoms, the relative risks of different forms of safer sex, the risks of pregnancy and to existing children, where to get what kind of support and so on. Support in terms of adjusting to living with the virus and learning to make personal priorities, making informed choices over health-care (including gaining access to its holistic forms) was identified as an area in need of development. Assistance with childcare—free from the fear of having them taken into care—was seen as a major form of support currently lacking. The chance to take space to ‘recharge’ was viewed as essential for mothers when asymptomatic, as well as in circumstances of illness. The need for respite and residential care facilities for mothers with children was also stressed, as were fostering systems which eased the

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passage of children from the care of their dying mother to a new family in a manner most beneficial to all concerned. Involvement in illicit drug use—present or past, direct or indirect— added a further dimension to support required at all levels. Gaining access to adequate medical care was a pressing concern. One particular source of debate was the question of pain control—i.e. the control of any kind of pain that an HIV-positive drug user (or former drug user) may have, HIV/AIDS-related or otherwise (such as a broken limb). The dilemmas for both patient and doctor were articulated in the context of personal accounts. I remember when my partner was in hospital and in a hell of a lot of pain and they were worried about giving him the morphine or whatever to kill the pain and I ended up getting really angry about it because it was obvious that he was in a hell of a lot of pain and what they were giving was—‘he’s obviously got a lot of tolerance to it and so therefore that’s his problem’. I said, ‘No, if he’s got a tolerance to it you should give him more. If he needs it then give him more’. It’s that sort of thing. They can be over-careful. The nurses are naive, doctors are naive. I’ve had doctors sitting down with me, admitting that they are naive because I’m HIVpositive and as I am an ex-user, they are frightened to give me pain-killers, frightened to do this and that… I have conversations with doctors where I’ve found I have been educating them. One ex-user offered a suggestion for support which involved a change in medical practice. The reality is that ex-addicts still do abuse the medication they get… I’ve seen people in dreadful struggles at the moment trying to stay off drugs but also trying to get their pain controlled—going over the top then not doing enough, never daring to take the painkillers. I think doctors have to consider each person as they come along individually and if people ask, ‘Look I only want to pick up three pills a day for my pain control’, the doctors should make those arrangements rather than say, ‘There’s no alternative, you’ve got to take away sixty pills’. An HIV-positive ex-user also described the problems of collecting a weekly prescription from a clinic:

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I’m made to sit and wait with a lot of active users and that is a really hard thing to do. I get offered drugs, I get offered methadone…maybe my doctor should try and give me an appointment where I don’t have to clash with a lot of crisis users… because that for me is really hard. More generally speaking, hierarchies of access to support were hinted at, where some women received very little in the way of emotional, financial and practical advice and support, while a connection with voluntary agencies could spell access to support services available from a range of agencies. I’ve been getting help from different charities …in a way I’m quite lucky because I’ve got quite a lot of good contacts so I can get help a lot easier. Well, I end up feeling guilty, then I think well, God, I might only have a few months left or a year—because a lot of my friends have been healthy and then next minute they’re in hospital and dying and you can’t put a price on someone’s life. I end up feeling guilty because I’m getting a bit of support. Support for families was mentioned as another area fraught with dilemmas. A comparison between HIV/AIDS and other life threatening conditions was made in this context—the feeling being that where HIVpositive women felt unable to approach their family for help because they felt the stigma attached to AIDS was so great, or had approached their family and met with rejection, they also felt that things would be different if cancer, not HIV were involved. Of those who had informed their families of their HIV-positive status, fear and rejection or else a patronizing attitude were the reported responses. My family couldn’t accept it at all. My brothers…they wouldn’t let the kids come to the party, they thought they could catch it from the food. I tried to talk, particularly to my brother and he said it’s not the fact he doesn’t care, it’s that he’s scared, particularly of catching the virus but also about ‘are you going to live, are you going to die?’ ‘Am I going to hurt myself even more?’ That’s what he’s saying to me. ‘If I get close to you now’… I feel quite patronized in some ways. You know, saying take care, you must have a rest, don’t do that. It’s like their own fear. I pick up so much fear from people who aren’t positive, I end up getting angry.

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Above all, participants felt that a major change in general attitudes to HIV would constitute a significant source of support. With the heavy stigma of HIV lifted, only the hard work of living with life-threatening illness would remain. Re-Evaluation and Contradiction I never think of myself as dying, it’s very important that we’re living with HIV, we’re not victims of it. I value a lot of things much more than I ever did. I don’t waste time like I used to. I question why I’m doing things and if it’s really what I want. I think for a lot of people finding out that they’re HIV-positive is a point of re-evaluation in their lives and that can be very positive. This woman touched upon the more positive currents which ran through discussions of HIV-related experience. Highlighting the upside of becoming infected with HIV and having to deal with the potential proximity of death and bodily disintegration, reassessment of lifestyle and relationships were referenced as pointers towards more potential control for women over their lives. Making personal choices and asserting one’s needs can follow on from a positive test result and this, it was felt, spelt progress for women who have traditionally put their own needs to the bottom of the list. One woman responded by being angry with her partner. [He was rejecting her]. She was worried about telling her parents and thinking—if I break this relationship will I get another one? She went on holiday, finished with [her] boyfriend on fairly good terms, what she wanted. She felt stronger, felt HIV had made her change her life. Everything had shifted, her perception of herself. She felt more powerful, assertive. Another woman spoke of developing skills in prioritizing different areas of her life. Saying ‘no’ sometimes, conserving energy, making the time to ‘recharge batteries’ were all things seen as difficult for women to do but which a positive response to HIV could precipitate. Humour was referenced as another important mechanism for responding to the virus. One woman described its role in her support group:

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There’s a lot of jokes, black humour—like who’s going to be the next to come down with PCP [pneumocystis carinii pneumonia]. It’s an essential way of dealing with it. Less of an option for women was looking to positive role models. It was felt that wider representation of women living with the virus—in an optimistic, non-sensationalist manner—would provide an important resource for fostering a more supportive response from the general public as well as opening up the possibility for isolated and worried women to come forward for help. But, while it was accepted that, in some local areas, specific women had come to serve as role models for women in their social orbit, this rarely happened at a national level or in any public ways comparable to those available to gay men. A connection between this and another characteristic of HIV-positive women—their greater isolation—was made. Women living in communities where no one knew their HIVpositive status all too often had only one point of HIV-related contact—the national organization, Positively Women. This unwillingness on the part of women to tell their nearest and dearest and the consequent isolation was partially explained by the poorlydeveloped level of local or regional services for women, their multiple social roles and resultant down-playing of their own urgent needs. The ability of women to ‘self-service’ as it was put, was mentioned. But it was women’s firmly internalized sense of social responsibility— responsibility for others—which was suggested as playing the dominant role in this ‘down-playing’ and the connected issue of low public representation of HIV-positive women. Conclusions In many ways the specific health and social care needs of women with the virus present us with concerns which have long been on the feminist agenda. Concern about the lack of attention to individual need and choice, often in the context of an official focus upon women in terms of reproduction, was motor to the women’s health movement in the 1970s. So too was the question of wider social attitudes to women shaping the quality of health and social care, which cast women in ‘deserving’ and ‘undeserving’ light. ‘Undeserving’ status, despite two decades of ‘sexual liberation’ for women, is still often triggered by any involvement in ‘unfeminine’ pursuits such as non-monogamous sex, sex for money or illicit drug use. HIV, with its negative impact upon the

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public mind and its particular association with socalled ‘deviant’ sexuality, has fuelled this situation for women. The positions occupied by women in the moral landscape have an important role to play in determining responses to women’s specific health and social needs. Without a significant change in the current picture, appropriate responses will be limited, as the following chapters suggest.

Chapter 3 Responding in a Crisis: Perspectives on HIV, Drugs and Women’s Needs from Edinburgh Valerie Morrison

Introduction and Context At the time this study was initiated, Edinburgh, a city with an estimated drug injecting population of approximately 2,000 (Haw and Liddell, 1989) had been facing a barrage of media and public attention in relation to the extent of HIV among injecting drug users for over two years. Of the 1,621 people with HIV reported by Scottish Health Laboratories up to the end of March 1989 (Answer, 15th April 1989), over half were known to be injecting drug users and were thought to have become infected through injecting rather than sexual activities. Sixty-one per cent of these injecting drug users were tested in Edinburgh, just over half of whom were under 25 years of age and almost a third were female. Sixteen per cent had developed AIDS by the time the following work was conducted, three of whom had died. With such a high seroprevalence amongst injecting drug users who had been tested, a proportion of whom are likely to be unknown to services and an unknown percentage of whom may not have been tested, concern regarding the spread of HIV infection into the community at large was enormous. The Scottish Health Education Group began a national campaign with the theme of ‘Take Care of the One You Love’ in early 1989. Stickers, posters, badges and leaflets carried the safer sex message to the wider population, and several doubledecker buses were painted with the same message. Furthermore a’pop’ magazine entitled Scene aimed specifically at the teenage population and covering issues relating to drug use and sexual behaviour, was published and available free at major newsagents. Services at that time in Edinburgh had been set up to respond to the problem of drug misuse which, in terms of injecting, tended to concentrate itself in areas of urban development and multiple deprivation

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(Robertson, 1987). In 1987 a needle-exchange opened in Leith Hospital, as part of the experimental scheme funded by the government (Stimson et al., 1988). Funding limitations and other constraints on these new services did little to enable provision of a comprehensive service. Local workers expressed the view that these exchanges were ‘set up to fail’ and it was soon acknowledged that the Edinburgh exchange, open only for two hours each week, was inadequate. The City Hospital’s Infectious Disease Unit had begun in November 1986 to prescribe methadone to individuals involved in injecting drug use although it was later required to limit this only to those who tested HIV-positive. In 1988 a Community Drugs Problem Service (CDPS) was set up to provide, among other things, counselling and centralized referrals to GPs who could prescribe in the community to intravenous drug users regardless of their HIV status (Greenwood, 1990). Anger had been expressed by drug users at this time that new services were springing up to help those with the virus, rather than to help those who were negative remain uninfected. Social Services initiated a programme of Supported Accommodation, again only available to those infected or symptomatic. Local drugs workers have campaigned for many years for a crisis centre. However, National Health Service funds earmarked for this had been shelved at the time of writing. The Study Participants It is against this backdrop then, that the discussions leading to this paper were set up. Potential participants were workers involved in a variety of statutory and non-statutory services, who had existing or potential contacts with HIV-infected persons or those with ARC or AIDS. Participants were biased towards those working with drug users since this is where the bulk of HIV-related service provision lay at this time. Also not represented were family members of infected persons or an HIV-positive woman (one was willing to attend, but on the day was unwell, having recently become symptomatic). One man with AIDS did participate in the group discussions. The maleto-female ratio in the discussions following was 1 to 3. The female-only discussion group contained a clinical psychologist working in a drugs agency, a consultant paediatrician, representatives from Supported Accommodation, Scottish AIDS Monitor, a local nonstatutory drugs group, and a representative from one of the newly set-up services for HIVpositive people, Fighting Back.

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The mixed sex discussion had representatives from Scottish AIDS Monitor, Salvation Army, Community Drug Problem Service, Brenda House, and two services set up specifically to work with those with the virus or AIDS, Frontliners and Positive Help. This group also contained two researchers, one working with prostitutes and rent boys on a study of HIV-related behaviours, the other (an ex-nurse) researching alcohol use, stress and risk-taking behaviours. The carers who took part in this Edinburgh study represented statutory, non-statutory, clinical and non-clinical services. Most had several years direct experience in working with drug users, a few had only become ‘involved’ since the advent and spread of HIV into the community. The conversations which took place were therefore based on a wealth of personal and professional experience and expertise, but do not necessarily reflect the opinions of other members of the organizations represented. Perceptions of the Caring Role in General In discussing the nature of care it is necessary to establish what perceptions and experiences carers encounter when dealing with illness in general. Several members of the groups had nursing backgrounds and as a result had worked with the young terminally ill, the elderly, and cancer patients, where there is a great need to remain supportive and optimistic, even if this is often difficult. Two factors which sometimes place extra stress on carers were discussed at length. First, one’s level of emotional involvement could threaten the ability to remain professionally detached. Nurses in the main ‘aren’t meant to get emotionally involved’, yet as one respondent stated, My experience…with young people dying of cancers…it’s really very difficult to keep seeing them coming back into hospital again and again, and a bit weaker than they were the last time and maybe taking longer to get out. The caring role also becomes more difficult the more focused a carer becomes on a specific illness. GPs on the other hand, could ‘switch off from one thing that may be found distressing, and ‘get some sanity from looking at other aspects of their work’. The role of empowerment was seen to be vital when caring for the terminally ill: the need to ‘give people the power back to look after themselves’. What is important is the

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quality of life…when you’re dealing with the terminally ill people, you alter your time scale and you look at intensifying and enhancing and expanding what is valuable and what is good as well as what needs closure. The second factor is that of patient ‘denial’, as one respondent described: Sometimes they go straight to their deaths and never can acknowledge it…we debate whether we should break through denial or leave it alone… Who does it take care of, who does it make feel better? Would it make us [carers] feel better if they accept they’re dying or we’ll be left with all the turmoil because if they’re denying it we’re left with all the stuff they’re not dealing with, like…what about their kids? Emotional involvement and patient/client denial contribute to what are often highly stressful jobs, and therefore the need for support for carers was emphasized. Gaining support, even asking for support, was however often difficult. With nurses…it is seen as a reflection of your ability to do your job if you need support. My superiors don’t expect me to need support in the job they’ve asked me to do…in fact I’d never admit to them that I needed it. Professionals and non-professionals in all occupations ‘have to have support because you start taking it home so it’s not just eating you, but you take it home to your family’. It is often harder for those at the top of their profession to seek support since they are ‘in the position that we are not allowed to crack up—we are supposed to be giving support’. Having support built into the employment situation was seen to be essential in order to enhance the quality of service provided. Burnout can be avoided. However even if support is on offer there may exist further barriers to support-seeking, for example a sex difference in support-seeking and support-taking was hinted at. The women’s group felt that it was often seen as both ‘unprofessional’ and ‘typically female’ to admit the need for support, especially to a male superior. Well yeah, it is hard but maybe it’s the professional thing—women [professionals] find it more difficult because they have to be like men…professional women who are trying to adopt the male role.

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The role of women in British society has created the situation where it is hard to admit that there is something they’re not coping with— they are seen as the people who cope and who control their family and watch the kids and whatever, so I think it is difficult for a woman to come in and admit she is not coping. I think that’s difficult for most women but particularly those who have children because…there is also that underlying fear…that these children will be taken into care and she’ll be seen as a bad mother. However one carer pointed out that Women have historically found it easier to get support because they don’t call it support…they talk with friends in ways that men don’t… I think the problem is, what role are you taking on? It’s often the role bit rather than the gender bit that gets in the way. It was thought that sexual orientation might also make a difference. Gay men are wonderful at being in touch with their feelings…the ones I’ve known were far more able to deal with their emotional lives than were the ‘straight’ men. It was thought that this may have been because gay men, in the main, have had to ‘work through’ being gay. Carers also stressed the need for illness, physical or emotional, to be dealt with holistically. It’s very difficult to see and counsel someone about their feelings when homelessness and poverty, and all these other problems are there. The situation many carers had experienced was that People present with things like rent arrears, gas bills, whatever… and these haven’t been what they’ve come to talk about at all, but once they become involved in a trusting relationship and in a secure environment, and they are ready—then they’ll come up with the issues that are worrying them… I think it’s a skill that people working have, they’re able to wait and give that security

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and concern and accept the person holistically and not just because there’s a ‘label’ over their head. A need exists in Edinburgh for more general and specific support agencies rather than existing services having to continually expand their ‘brief’. Those agencies doing the caring, which are on the frontline, should be careful not to try and take on everything…my feeling is that we need a heckuva lot more but we don’t need to be the ones providing it. To solve the problem of services having to cope with additional work demands, more resources are needed. The search for funding often causes major problems. Funding almost always needs justification, yet the therapeutic value of some activities for which funding is sought is not always obvious to the politicians or funders. Lack of service provision and the need for support are not new issues. They have been faced by carers working with many groups of people for long periods of time. This must be kept in mind when we begin to look at HIV and AIDS-related issues. HIV and AIDS have renewed the call for change, and maybe now some of the calls will be answered. HIV and Drugs Among many of the services provided in Edinburgh, working with HIV ‘just happened’ as an almost inevitable continuation of drug-related work. There was little choice involved, although no one expressed regretting their involvement. What was important was to see drug-using ‘clients’ holistically and not just in terms of their drug use behaviour. HIV is HIV, and carers saw no reason why individuals should be treated any differently if they also used drugs. Around this time several new services were appearing which were set up specifically to work with HIV-infected persons. Some were run by people with AIDS and set up to work with only symptomatic people. Workers in this context were unable to respond to someone with HIV but without an ARC or AIDS diagnosis. Edinburgh has also seen services splitting between those working with HIV-positive people and those working with HIV-negative people. For example, methadone was available on prescription only for HIV antibody-positive drug users at the City Hospital; supported accommodation was available to those

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positive or symptomatic; and clothing grants and other financial assistance could be applied for if a positive diagnosis was confirmed. As one drug-using client was reported to have said, I’ve needed help before and nobody wanted to know me; now I’m HIV-positive everybody wants to know me. HIV-negative people felt justified in their anger and had been heard to say, I’d be as well to become positive, then I’d get some help. It was not that these services were unwilling to become involved with those outside their ‘brief’, but rather it became a political, financial and physical impossibility to do so. Workers from statutory and non-statutory sectors reported an increase in families and relatives presenting for advice and support. Families who are extremely frustrated and powerless about doing anything in relation to their child becoming increasingly ill… parents are becoming more and more focused…obsessed isn’t really the right word—their child is dying…their lives are becoming increasingly funnelled into paying attention to every aspect of that person’s life, to the exclusion of their own mental health. As the demands on carers increased, feelings of helplessness and frustration were expressed because there often was not enough time for workers to work through the illness and infection with people. Some carers admitted that they were ‘working on their knees’, beginning to worry about burn-out, yet at the same time trying to remain optimistic. One community drugs worker stated, I’m working with an illness where there is nothing I can do and I’m working with people where the resistance is very high… I have several young HIV-negative drug users who don’t seem to give a damn about staying negative. Drug users are not the easiest group to get through to as at times, it was felt, their resistance to ‘outside’ help and advice can be fairly high. The nature of the service provided—informal rather than formal, friendly

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rather than detached—is all important (Hartnoll and Power, 1989). Several drugs services in Edinburgh have developed open and trusting relationships with groups of injecting drug users. Not all services, however, are so able to contact young and chaotic injectors, for example needle exchanges which tend to attract older, more stable users (Stimson et al., 1988). One worker described how she coped with what is often an unrewarding process of counselling someone towards change. You scale it down—you can’t make huge progress so you’re grateful for making even the slightest progress. I do have hopes—I have to—I couldn’t keep working if I didn’t and I’ll always hope that there will be things which come along that will help us in the struggle. There is a group of people far harder to reach, educate or ‘treat’ than the ‘worried well’ who will in fact often make contact with ‘professionals’ in order to get information to allay their fears. This group is the ‘unworried ill/at risk’. City Hospital staff had witnessed that every time there is a death amongst intravenous drug users we get a host of people coming up to get themselves checked out, and if things are stable they all go away again…they block it, they don’t want to talk about HIV. There is a fear that some people avoid service contact because of an implicit expectation of having to be ‘counselled’. It’s the new ‘in’ word—yet there are much more helpful things— practical things which are often much more important. Why are we ‘counselling’ anyway? We used to ‘talk’. Some HIV-positive people talk of suicide, of death, of euthanasia. There were mixed feelings among carers as to how to deal with these issues. One carer, who himself has AIDS, said: With HIV, I don’t think you should counsel people about death— it’s HIV. In the States I met someone who was diagnosed with HIV ten years ago. You know—people can live the rest of their lives healthily with HIV, so counselling someone about death would probably freak them out.

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However another carer met with agreement when she replied: Yes, but I think people do want to be counselled and do want to talk about their death, and I think that if someone has been diagnosed as positive and wants to talk to me about dying, then it would be bad for me not to listen… I have to listen to that first before I can help them to see alternatives. It was acknowledged that it takes a lot of skill to know the time to start bringing the conversation round and back to the present again and to hopes and aspirations for the future. In an area of high HIV prevalence, where some clients were beginning to develop symptoms (with potentially many more just around the corner), it appeared that in spite of the energy and commitment put into caring, workers were still inevitably faced with many negatives. Due to the ‘stigma’ which is attached to drug use, HIV and even more so to AIDS, carers frequently encountered attitudes that ‘it’s about containment, rather than a general healthcare issue in which you take certain precautions’. One teacher asked What do we have to do to protect ourselves from these children in our school that might have AIDS? Drug users are still often seen to be ‘self-destructive and therefore deserving this fate, as are gay men who are often seen as evil or morally wrong’. It was pointed out that This is a group [drug users] that can be easily targeted by public hostility because of their addictions, as though they brought it on themselves…[there is an] attitude of it being self-inflicted so…let them die. Unsupportive questions, such as ‘What do you want to work with drug users for?’ have often been asked of carers. The feeling that your career takes a nose-dive if you work with drug users—you get that from people.

34 PERSPECTIVES ON HIV FROM EDINBURGH

Changing the Climate The Edinburgh group discussants felt that any serious engagement with HIV-related issues necessitates a fight against social prejudices. Drug use has been and will continue to be part of our society. Stigma and prejudice are not only a waste of time, but if used as delaying tactics for service provision also lead to a waste of lives. In the general public there is a great need for information and education so as to overcome the feeling that HIV and AIDS are synonymous and that those infected are dangerous and to be avoided at all costs. The impression many carers had was that the general public would not greatly change their attitudes until they knew someone who was infected. Although, as the consultant paediatrician stressed There isn’t the time to wait until everyone has a personal experience. Stigma may also prevent people seeking help and advice, therefore it is necessary to convince the general public that everyone has to be interested in this disease—we’re not just selecting two [injecting drug users and homosexuals]. Yet resistance is high. They want to box it away, because it’s frightening and there’s no cure; ignorance is like racism. Increased public awareness and concern would benefit those with the virus, professionals and, more importantly, family members. Because of the lack of education and the lack of acceptance of society, the support is not there. Yes, if your child or lover is dying of cancer you can talk about it to the person at the bus stop, but if they are dying with AIDS people don’t want to know. The need for education has been acknowledged by some schools in Edinburgh and several carers had given talks to pupils about HIV-related issues. That more education is still required was highlighted by one respondent whose 7-year-old daughter returned from school one day

AIDS: WOMEN, DRUGS AND SOCIAL CARE 35

saying, ‘Mummy, if someone falls over in the playground we’re not allowed to cuddle them anymore’. The child went on to explain that a teacher had to be fetched who would appear wearing rubber gloves! If teachers aren’t given more information and training the risk is that They’re imposing their own negative values on the children, the staff aren’t taught to overcome their own fears and their own lack of knowledge. A Salvation Army worker had been invited to give HIV education within general ‘caring’ classes undertaken by a schools’ religious education department. This was considered to be preferable to focusing solely on HIV. It’s actually a much easier way for people to deal with new or frightening information…. This low-key approach was contrasted with media presentations like the big TV ads with chunks of granite and impending death, [where people’s] own natural defence is denial. If you are faced with something as monumental and granite-like as that, you cut off… You [need to] work at it on a meaningful level. Families of HIV-positive people, and/or people with AIDS, urgently need more information and support. Family support groups are minimal in Edinburgh. One new group that had arisen in the months prior to these discussions was Positive Help. This group of volunteers offered practical assistance such as babysitting, cleaning, shopping, etc., to families where HIV was present. Doing practical tasks within the family setting plays the additional role of facilitating emotional support and information exchange. Support can be sought at both formal (through linemanagement) and informal (through friends and colleagues) levels. It can also be brought in privately. One social worker did this and expressed its value in terms of being able to look at what’s actually happening with me—what issues are being touched in me…that I’m a bad person—that I’m no good because I can’t solve the problems in Edinburgh—then I have to take them

36 PERSPECTIVES ON HIV FROM EDINBURGH

elsewhere…so that there’s someone stepping back and being objective. Often the key to support was managing to find someone who could be objective, someone not necessarily experiencing the same stresses. This is particularly essential where workers themselves are infected or symptomatic: Some days you hear of somebody else who has died and you feel really down because it’s so close to home—and you can’t really turn for support within our group because we are all in the same position, i.e. diagnosed with ARC or AIDS. One drugs worker graphically described how she had been working in the Edinburgh drugs scene for five years now and seen the dramatic change in the young people that I’ve worked with and found it very stressful… I came into the drugs ‘scene’ to work with young people in the belief that everybody could become drug-free and lead a drug-free life with a future…and now I’m working with young men and women who are…uhm…looking at a very short future. Drug services’ earlier philosophies of abstinence have moved towards risk reduction, and the means for change are being provided via needle exchanges, maintenance programs, etc. However, funding once again becomes a key issue. As a drug worker in Edinburgh initially, there just wasn’t any money at all. And then HIV came on the scene and all the money poured in… Then a split comes between them and drugs agencies who may not get AIDS money and have had to struggle for a long time… Funding is mainly for limited time periods which constrains the implementation and development of coherent policies and practice. As one worker put it, Rather than having an overall strategy, what has happened is that they piece-meal respond to the need that is being perceived at the time.

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Funding is considered to have come too late in Edinburgh (i.e. after many individuals were already infected). We knew what was going to happen in this city but we pretended… we didn’t take on board the information that we had from a whole load of places…and that is one of the saddest bits…we waited. Two other areas were seen to urgently require increased resources, the first of which is housing. There should be a general housing policy that good quality houses are available to people who are ill—no matter what the illness. Whereas what often happens is that, They [the council] still rehouse people from a drug-using community back into a drugusing community—and that’s not positive housing… I’m not saying that people who are positive or have AIDS should get preferential treatment against people who have cancer or don’t have legs or whatever. But there should be a system where all these people get ‘points’ and do get good quality housing. Edinburgh District Council’s housing department had reputedly an ‘enlightened’ policy in relation to people with HIV. However this policy was not thought to have been put into effective practice. As a result, some carers had been faced with young HIVpositive women who, in the view of the carers, saw pregnancy as a means of gaining more points and thereby quicker access to better housing. In the main, single mothers are housed in areas of multiple deprivation with few facilities, which does little to enable the mother to provide a healthy and secure environment for her child. The second area urgently needing recognition is that of childcare. It was acknowledged that neither inadequate childcare nor housing facilities were unique to either drug users or people with HIV, however there were areas where better provision could alleviate some of the unnecessary stress put on people with the virus and/or becoming ill and on those who care for them. In Edinburgh it is common for grandparents to have custody of children where one or both parents are using drugs. Several participants in the discussion had contact with such guardians who had expressed feelings of isolation and a lack of

38 PERSPECTIVES ON HIV FROM EDINBURGH

supportive contact with parents or other guardians in similar situations. This lack of support could reduce the likelihood of these grandparents/ guardians coming forward for advice and support if their child has HIV. The availability of pre-school nurseries where information could be received on a variety of issues such as welfare rights, health, HIV, could help in making these ‘unanticipated’ carers feel less isolated. Women and HIV Many available services are male-dominated in terms of clients, which reflects the finding that in drug-using populations the sex ratio is commonly at least two males for every female (Morrison and Plant 1990, Hartnoll and Power 1989, Stimson and Oppenheimer 1982). This ratio may make such services less attractive to women. Women are thought to wait longer before presenting to an agency for advice or help with a problem. This delay is likely to be, in part, due to the fear of being seen as an ‘incapable mother’ who may then have her children taken into care. It is hard for women, therefore, to admit they’re ‘not coping’. The women participants felt that sometimes it was easier for a woman to counsel female clients as they could identify with these fears and worries where a male might not. However there is a risk here of ‘over-identification’ and a higher level of involvement which can lead to even greater stress on the carer. Women do have different needs, for example the need for information about reproduction and pregnancy. In March 1989, 32 per cent of HIVpositive drug injectors in Scotland were female. At this time there were also seventy-eight Scottish infants infected with HIV. One local paediatrician was working with twenty infected children and revealed that among mothers who were becoming symptomatic the need to ‘have a baby before they die…do something creative, something of their very own’ was often expressed. Some female clients perceived having a child as a means of ‘giving a gift to their partner—as if to give part of themselves out of great love.’ This would appear to be synonymous with the finding that many women consider not using condoms as a means of confirming love and trust of one’s partner. The paediatrician reported that some professionals in the medical field consider that she, by working with HIVpositive and pregnant women, was condoning pregnancy and the transmission of the virus. Women need to be encouraged and enabled to be more assertive about safer sex, and to be provided with all possible information regarding the risks of transmitting the virus to an unborn child (Bury,

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1989; Johnstone et al., 1990). In addition, women with HIV may experience feelings of depression and guilt at not being able to cope with their varied roles (mother, partner, carer). Terminally ill women with children (or other dependents) have to face their death with many more pressing worries than perhaps those without dependents. There were many cases discussed where mothers were beginning to develop symptoms, but had not yet managed to discuss their probable death with their children. Carers found their silence exceptionally difficult with which to deal. I’ve got this woman who’s dying. She’s close to tears because she’s got this 3 or 4-year-old who she knows she’ll be leaving behind, but then she’ll just start talking about other stuff… What do I do there? Breaking through or working with denial in these cases needs a great deal of care. Furthermore, to alleviate mothers’ fears for their children it will be essential for childcare provision to increase. The need for a ‘play therapist’ to work with children suffering trauma as a result of losing a mother was mentioned. One participant named a child psychologist who was prepared to work with families and guardians of children of HIV-infected mothers. This name was rapidly noted down since all the other participants knew of at least one case they would like to refer. This reflected the urgency of the need for more provision in the child and family support arena (Roulston, 1990). The assumption is often made that an Edinburgh woman with HIV must be either an injecting drug user or a prostitute. Yet there are many examples of female non-drug using partners of HIV-positive males. Sexual transmission by this route is only beginning to be investigated (Robertson and Skidmore, 1989; Johnstone et al., 1990). Spring 1990 Update By 31 March 1990, Scottish Health Services Laboratories had reported 1, 769 cases of HIV seropositivity, an increase of 148 since the same date in 1989. Of these, 919 (52 per cent), had been identified as injecting drug users and of this number, 563 cases were identified in Edinburgh; 68 per cent were males. Heterosexually transmitted infection accounted for 7.4 per cent of all Scottish cases, an increase of 1.3 per cent (n=32), since 1989. (Answer, 14 April, 1990). By February 1990, thirty-seven AIDS

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cases among injecting drug users were recorded, nine of whom had died (an increase of over 100 per cent on 1989 figures). Some of the original participants met in February, 1990 to discuss changes in policy, practice and provision that had taken place since the original meetings in 1989. Local practitioners working with a large number of people with HIV/AIDS have predicted a heterosexual ‘epidemic’ of HIV infection and have announced that in Edinburgh 1 in 100 males between the ages of 15 and 44 are currently infected. This has obviously led to increased public and media concern. How has this concern been reflected in the funding of new services? Several new groups have emerged specifically to work with people with HIV and AIDS. One example is SOLAS, a project funded by Lothian Social Work Department and various charitable trusts with aims of providing services, activities and information for children and adults with HIV, carers and HIV workers. Sex workers (prostitutes and rent-boys) have become a group targeted by research and educational projects (Plant, Plant and Morgan-Thomas 1990). The Centenary Project and SCOTPEP are two projects which provide ‘working’ prostitutes with the information and the means of safer sexual lifestyles (e.g. condoms, pessaries, spermicides, etc.). Childcare needs are being recognized with a push for respite care and foster care of children of HIV-infected mothers or fathers. Parents, particularly single mothers, are being encouraged to be involved in the choice of foster families for their children, in the event of their death. The rationale for this is that mothers can feel less guilty and worried about their child(ren)’s futures and relax a little and look at their own issues. As one carer put it, ‘they need to be able to die well’ i.e. with fewer fears for their child(ren). Several local drug groups have set up women’s groups with workers employed specifically to look at women’s needs (Positively Mothers, and the Leith Group). However, some professionals have expressed the fear that this is compartmentalizing, which may lead to women feeling they can only attend such centres at specific times on specific days. Carers are still feeling that they need validation for their roles. Some workers had got the impression that their roles were considered more ‘valid’ if they were voluntary, rather than paid workers. HIV in Edinburgh is inevitably becoming increasingly ‘medicalized’. Many clients now face a never-ending round of appointments for counselling, maintenance treatment and psychological testing by researchers. Furthermore, it is believed that there is still inadequate pre- and post-test counselling, specifically in prisons. Claims of poor professional treatment

AIDS: WOMEN, DRUGS AND SOCIAL CARE 41

have been made, for example, GPs pressurizing women to have a termination rather than going through a pregnancy with adequate” information and support. Women who not only have the virus but are also pregnant face additional stigma. The Women and HIV/AIDS Network (Scotland), set up in 1987, circulates information about HIV/AIDS, organizes seminars and workshops, and keeps women up to date about what is available in Scotland. This group deserves recognition for bringing issues discussed within this chapter, such as childcare, reproduction and bereavement, to the fore. So far however, recognition has not led to funding being provided in order to employ a full or even a part-time coordinator. This organization is managed by women already in full-time employment in drug work, healthcare, social services, counselling and research. This chapter has underlined many of the frustrations and problems being encountered by those working in the drug use and HIV field in Edinburgh, 1989–1990. Although the overall tone may appear pessimistic it must be kept in mind that carers expressed many hopes— hopes that can primarily be brought to fruition by increasing education, support, information exchange and funding. Multiple deprivation undermines a lot of positive work being done in Edinburgh. This is a political problem which requires tackling at the grass roots level. What is needed is a ‘voice’ to defend the rights of people with HIV and, equally, the rights of those who care for them.

42

Chapter 4 Drugs, HIV and Ireland: Responses to Women in Dublin Shane Butler and Marguerite Woods

Introduction In a volume which is primarily concerned with HIV-related issues in Britain, the presentation of findings from a Dublin study can only be understood when considered within the vastly different social policy context of the Republic of Ireland. While not ignoring economic differences—and it is clear that Ireland simply could never have afforded comprehensive health care and social welfare systems comparable to those established in post-war Britain—a major source of social policy differences between Britain and Ireland must be located in the dominant influence of the Roman Catholic Church on Irish political culture. Ireland is a country in which more than 90 per cent of the population identifies itself as Catholic and, of these, more than 80 per cent attend Mass at least once a week. It is also a country in which ‘officials’ of the Catholic Church, bishops, priests and others, have systematically attained an influential position in the fields of education, health care and social services; more importantly, they have succeeded to a degree that is unparalleled in other Western societies in limiting and dominating public discourse on a wide range of social policy issues, particularly in the area of sexual morality (Inglis, 1987). At a general level, British observers who find it difficult to understand the complex patchwork of Irish health and social services, where a much greater role is played by religious and other voluntary bodies than would be found in the relatively seamless garment of the National Health Service or the ‘Welfare State’ of Great Britain, should understand that this Irish system still reflects the Catholic social principle of subsidiarity. This principle, which was enunciated most strongly during the 1930s, asserts the desirability of leaving as many societal functions as possible to bodies lesser than the state; it suggests that families, community associations, professional or vocational organizations

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and other such groups should play a greater role in the management of society than the state—whose role should be a subsidiary one (Whyte, 1980). When applied to health and social services, this principle has both positive and negative implications: it helps to avoid the overcentralization and inflexibility which may be associated with state-run services, but it may also contribute to fragmentation, overlap and a poor use of scarce resources. On a more specific level, Irish responses to HIV and AIDS must be considered against the background of the country’s long-standing social policy on marriage, sexuality and reproduction, and its more recent policies on drug problems. For fifty years, following self-government in 1921, the law in Ireland had clearly reflected the teaching of the Catholic Church; abortion, contraception and homosexual activity were all prohibited by statute, while there was a specific constitutional ban on the enactment of divorce legislation. In 1973, however, the Supreme Court ruled that the statutory ban on the importation of contraceptives was in violation of a constitutional right to privacy, and it became evident that family planning legislation would have to be enacted to take account of this ruling. Given the continued opposition of the Catholic Church to contraception and a general cultural ambivalence on this issue, the task of introducing family planning legislation was to prove long and difficult. Family planning legislation was first enacted in 1979, with legal access to contraceptives being confined to those who needed them for bona fide family planning purposes; this ambiguous phrase was generally understood to refer only to married people, with members of the medical profession being made responsible for determining who precisely fell into this category—even to the extent that condoms were only legally available on prescription! Eventually, in 1985, this legislation was amended so that all those over the age of 18, regardless of marital status, could purchase condoms and have legal access to all forms of contraception. In most other Western societies, where the use of the condom for contraceptive purposes had long been normative and noncontroversial, it was relatively simple for health educators to present the public with information on its value as a means of preventing the sexual transmission of HIV. In Ireland, however, it was only following the arrival of HIV that condoms became legally and widely available, and furthermore there was no change in the teaching of the Catholic Church on this issue. This meant that Irish health educators felt obliged to be circumspect in their advocacy of the condom as a means of preventing HIV transmission, lest this be interpreted as promoting promiscuity.

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Similar difficulties existed for health educators in relation to male homosexual behaviour and its role in the transmission of HIV. Despite the establishment of a National Gay Federation in 1979 and an associated Campaign for Homosexual Law Reform, the Victorian legislation which made male homosexual activity a criminal offence in Ireland continued to remain on the statute books, so that AIDS prevention campaigns which explicitly advocated ‘safe sex’ practices for homosexuals could be construed as condoning criminal behaviour. In 1985, however, a Gay Health Action group was established which has continued to provide information and advice on all aspects of AIDS and HIV for the Irish gay community; the work of this voluntary group has not been politically constrained, as inevitably would the work of a statutory body which attempted this task. Finally, given the well-recognized risk of the transmission of HIV between needle-sharing drug users, brief reference will be made to Irish public policy on drug problems. It was not until the late 1960s that there was any perception that Ireland had a drug problem and, following an initial flurry of committees, reports and other discussions, treatment and rehabilitation services were established and the Misuse of Drugs Act 1977 was enacted. Throughout the 1970s, the numbers of drug users presenting for treatment or rehabilitation remained low and intravenous opiate use was relatively rare; in 1979, however, the situation changed dramatically with a sudden increase in opiate use, and in particular intravenous heroin use in the Dublin area (Dean et al., 1985). The overall tenor of Irish drug legislation corresponded to that of Britain and to international conventions generally, but in the area of treatment and rehabilitation Irish services were unusually narrow and uncompromising. Only one statutory centre, known from 1969 to 1988 as the National Drug Advisory and Treatment Centre, was established in Dublin, while general medical practitioners, community psychiatric services and other generic health and social service workers were discouraged from becoming involved with drug users. Similarly, just one residential rehabilitation centre, Coolemine Therapeutic Community—a voluntary agency—was established; Coolemine was heavily influenced from 1979 onwards by Daytop Village Therapeutic Community in New York, as a result of which it continued to promote uncritically the view that drug problems were largely explicable in terms of individual personality disorder and that a commitment to total abstinence was a prerequisite for any involvement of health and social services with drug users. With the exception of the Ana Liffey Project, a city-centre street agency which was established in 1982, it can be said that until the advent of HIV, the

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Table 1: Breakdown of identified HIV cases for the Republic of Ireland (1 May 1988)

* Tested at Blood Transfusion Service (Source: Department of Health, 1989)

only services available to drug users in Dublin were brief detoxification and/or long-term rehabilitation in a drug-free therapeutic community. However, from the mid-1980s, once the link between needle-sharing and the spread of HIV had become apparent, Irish health and social services for drug users began, albeit slowly and grudgingly, to introduce ‘harm reduction’ practices. At the time of the research reported here, a methadone maintenance programme had been in existence for about two years at the Drug Advisory and Treatment Centre and planning for the establishment of a needle exchange scheme at a newly-opened AIDS Resource Centre was at an advanced stage. The creation in 1988 of a number of outreach worker posts by the Eastern Health Board—the statutory authority for the delivery of health and social services in the Dublin area—also reflected an acceptance of the need to move away from total reliance on centralized services for drug users. While voluntary groups which subscribed to harm reduction practices were neither as plentiful nor as organized as those concerned with gay issues, some developments had taken place on this front, and AIDS Action Alliance, the major umbrella body for voluntary groups working with AIDS and HIV issues, had a clear commitment to fostering ‘user friendly’ services for drug users. The Women and AIDS Group, which was established in the late 1980s, also provided detailed and explicit advice on the transmission of HIV. Sample and Methods At the time of this research, in May 1989, statistics issued by the Department of Health in Dublin indicated that 814 people had tested HIV-positive in Ireland of whom 474 (58 per cent) were categorized as intravenous drug users (see table 1). Although no official gender breakdown of the HIV statistics was presented, the researchers estimated

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Table 2: Participants in group discussions

on the basis of various informal reports and statements that 118 (25 per cent) of these intravenous drug users were women. While some of those categorized as risk unknown may have been women, it was not possible to estimate how many. In relation to the fifty-four children who were HIV-positive, all were categorized as children of drug-using, HIVpositive mothers. Even if one assumes that the only HIVpositive women in Ireland at this time were the 118 women deemed to be intravenous drug users, this still suggests that women made up more than 14 per cent of all those who tested HIV-positive, a proportion which was more than twice that reported in the United States and Britain at this time. The aim of this Dublin study—in common with those of the various British centres enlisted by ISDD—was to ascertain the views of those who cared for HIV-positive women as to what was involved in this task. The carers were to be questioned concerning the needs of HIV-positive women, particularly gender-specific needs, the resources available to meet these needs and the appropriateness of the training and support systems available to the carers themselves. This information was gathered primarily during the course of two semi-structured discussion groups, each of which lasted for ninety minutes and was audio-taped; further information was gathered through four individual interviews with women, three of whom were HIVpositive while the fourth was the sister of a woman who had recently died of an AIDS-related illness. The first discussion group consisted of ten participants and one researcher (all of whom were female), and the second group consisted of eleven participants (three of whom were male) and a male researcher. While no doctors were available for the discussion groups, the researchers were satisfied that, with this exception, they had succeeded in attracting

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participants who were well-placed to provide information on HIVpositive women in Dublin at this time (see table 2). The decision to conduct individual interviews with three HIVpositive women and with a family member was forced upon the researchers by the unwillingness of these women to participate in the larger group discussions. The women’s unwillingness was based to some extent upon their view that they would be inarticulate amongst the professionals who made up the bulk of both groups but primarily upon their fear that any critical remarks which they might make would have negative repercussions upon their future treatment, particularly by statutory agencies. As one woman put it: I didn’t want to go to the group because I was worried about one or two of the people there. I don’t have much contact with the social services, except for the Drug Treatment Centre and the street agency for drug users. To be honest, I would prefer to keep it that way. You can’t let them know too much about yourself and I don’t care what anybody says. I don’t believe a lot of them are confidential. I’d be afraid I’d lose my Phy [methadone maintenance] if I said a word out of place. (HIV-positive woman) Care and Support One of the first issues to be addressed during group discussion concerned these workers’ perceptions of their own performance as carers of HIVpositive women. Their commitment to their clients was clear and coherent, yet they recalled with candour how they had confronted their own fears and misconceptions and moved beyond their initial ‘bad handling’ of HIV-positive clients. One carer, for instance, described her first exposure to HIV-positive clients thus: [I felt] pure fear, I mean I always remember it… I just thought that if I was to continue as a ward sister and be effective, that I had to get rid of this fear and get rid of this ignorance…… The mothers were coming in and being very protective and being very angry with us…and I don’t blame them…[the staff] were going in with gloves and masks and gowns and making those children so very different to the other children. (ward sister) Similarly, a social worker in one of the city’s maternity hospitals said:

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We went on the wards masked and gowned, getting information from members of staff who really didn’t know very much about it themselves. On the whole, however, the participants in the group discussions were satisfied that they had successfully confronted their own prejudices and developed an expertise in caring for HIV-positive clients. In many instances it was felt that this learning had taken place despite rather than because of the organizations within which the participants were employed; one maternity hospital social worker concluded that Learning is happening with my patients; together we’re educating each other. While many participants were critical of the institutions within which they worked, arguing that these institutions imposed limitations on their roles as carers, perhaps the most critical comments referred to the way in which the Dublin prison system had coped with HIV: The virus first showed itself when suddenly the test was offered to anybody, without pretest counselling…and an enormous number of people, men and women, came forward out of curiosity to have the test done: and suddenly the prisons were confronted with getting these results back—maybe sixty or eighty positive test results—without knowing what to do with them… The prisons decided that they would segregate on the basis of HIV status, and that caused an enormous amount of problems at all sorts of levels… women were segregated and men were segregated…publicly identifiable as people with AIDS… That has changed over time… [the women] are now semi-integrated while the men remain segregated. (prison psychologist) The mood of the carers, not unnaturally, tended towards pessimism and despondency, with some of them pointing out that the burden of HIV, rather than being randomly distributed, bore most heavily on those from a lower socio-economic background who were already unusually disadvantaged. One community worker, who was employed in an innercity voluntary project, described HIV as ‘the ultimate blow to people who have been put down and oppressed for years’. Attitudes towards the deaths of their clients also varied. At one extreme, a counsellor said ‘When people die I tend to think—well who’s next and where’s it going

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to end?’ while two of the social workers, who had previously worked with the terminally ill in oncology settings, believed that this prior experience and training had helped them towards a more philosophical acceptance of the premature deaths of their HIV-positive clients. While it was obvious that both statutory and voluntary health and social services had adapted and were involved in a genuine attempt to meet the needs of those who were HIVpositive, a common criticism was that all of these helping services were poorly coordinated and that scarce resources were not being used as efficiently as they might be. One addiction counsellor remarked that ‘people are either being counselled to death or not counselled at all’, while, in an individual interview, a woman whose sister had died of an AIDS-related illness concluded that We had too much counselling, too much support… It was really financial support we needed. This type of criticism was repeated by many participants, particularly with reference to the difficulties which HIV-positive people experienced in obtaining special dietary allowances and other discretionary social welfare payments. An HIV-positive woman described the process of getting these discretionary payments as being like getting blood out of a stone…you’d think it was their [the Community Welfare Officers] money. In general, it was agreed that for HIV-positive women there was a real need for more practical help. A psychologist from the Drug Treatment Centre suggested that frequently what was needed was somebody able to come into the house and give a hand if they’re not feeling very well, and to cook a meal or else look after the children or whatever. The woman who had helped to care for her dying sister was very satisfied with the nursing and medical support that the family received, which had enabled them to care for her sister at home; she argued, however, that financial and other practical assistance had not been easy to obtain: We got most things we needed in the end: but after a big fight and in some cases it was too late.

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All of the criticisms of scarce resources must be understood in the context of health service and other public sector cutbacks which had been intensified by the Fianna Fail Government, elected in early 1987. During the general election campaign of June 1989—just one month after this research was undertaken—it became apparent that the Government had greatly underestimated the strength of public feeling on these cutbacks. This feeling was expressed most plaintively perhaps by the HIVpositive woman who asked Where are we supposed to die? On the streets? There won’t be any hospitals left with the health cutbacks. There was general agreement also that family and community support for people who were HIV-positive or who had developed some related illness was of major significance. An interesting observation on this phenomenon went thus: One thing about inner-city people is that they tend to accept things. They accepted everything from TB to the flea epidemics which happened in the ‘50s… What strikes me is the lack of selfpity and the ready acceptance, not just on a family level but on a community level…for example, in one particular household I was in on a Friday evening there was a knock on the door and there was a man collecting money for the cable TV. Another chap called later collecting for ‘Johnny Bloggs’’ funeral and they said ‘Sure Johnny isn’t dead yet’; he said ‘He’s dying of AIDS but [the undertaker] isn’t going to bury him because they haven’t paid for the sister’s funeral, so we’re making a collection’. This was happening …it wasn’t remarkable; it was like the cable TV money! … There’s a very strong clan system within the community. (addiction counsellor) The suggestion that families and communities were as open and supportive as this did not, however, receive unanimous support and, while it was frequently observed that women who were HIVpositive were readily accepted and helped by their mothers, there were also frequent references to the reluctance of families to speak openly of HIV or AIDS. The phrase used by more than one person was that such families spoke ‘in codes’. A maternity hospital social worker spoke of a client who had died as

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Dying of a million and one things—we all knew what she was dying of, but it was never actually addressed at any level at all, even on her death bed. This was expressed rather more colourfully by the woman whose sister had died: It’s our business what they died of—I don’t want her kids to be reared with that over their heads. People would say Their mother died of AIDS’: kids can be really hurtful… God clocks people in and out…it doesn’t matter what they died of, they shouldn’t be put down because they died of AIDS, we’re all human. It’s our family secret. There was general agreement, however, both among the participants in the group discussions and from the four individual interviews, that the burden of care for those suffering from HIV-related illnesses was being primarily borne by families. There was no evidence that the ‘buddy system’, which has evolved in other countries, was in operation to any appreciable extent in Dublin; instead, regardless of previous intrafamilial conflict, Dublin families appeared to close ranks and offer an impressive level of care and support to their sick members. Drug Issues Since most of the professionals who took part in the group discussions were primarily involved with HIV issues through their contact with drug users, it was not surprising that drug-using women and women who were sexual partners of drug-using men were readily identified as people who were in need of care and support. Many of these professionals had, of course, worked with drug users prior to the advent of HIV and so they were well-placed to comment upon the changes that had occurred in services which were specifically designed for drug users. The discussion which concerned drug users was based almost entirely upon the assumption that drug users were from a lower socio-economic background, and this naturally strengthened views concerning the need for practical assistance for HIV-positive drug users—finance, housing, diet, travel allowances and other such help. Equally, it was appreciated that advice concerning health promotion—which might be easily given to and received by health-conscious middle-class people—was rather more difficult for HIV-positive drug users from a lower socio-economic

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grouping. One counsellor pointed out that most of the women she dealt with were poorly educated: [They] wouldn’t know a vitamin from a carbohydrate or anything like that… You can talk about it, you can set out a diet but they really don’t have the financial resources to follow that through. The primary reason why drug-using women were unwilling to attend the group discussions was, as already explained, because they were fearful that they would be penalized for any critical remarks which they might make about Dublin’s drug services. These women were cynical about the services, arguing that such change as had occurred was prompted by a fear that HIV might be spread by drug users into the general population, rather than by any genuine concern or respect for drug users. The main point which they made was that while some harm reduction practices had been introduced, many of the punitive and moralistic attitudes had remained unchanged so that the drug services could not yet be described as ‘user friendly’. Pehaps this was expressed most succinctly by the HIV-positive woman who described the Drug Treatment Centre as follows: The only reason they are concerned about us now is because they think that if they keep us from using, then we won’t spread the virus… It was hard to get on the maintenance programme and it seems even harder now. I don’t know if it’s that they’re too busy and can’t cope. There are no fresh ideas… When you can stand up for yourself they can’t stand it. A lot of addicts going there live for their Phy (methadone) and are terrified (HIVpositive woman) In fairness to all those workers from statutory services who participated in this project, it should be emphasized that none of them described drug users in negative stereotypes nor did any of them express major reservations about harm reduction policies. In fact, the psychologist from the Drug Treatment Centre suggested that a lot of the women who are HIV-positive and [who] have maybe been on a maintenance programme for a number of years have changed their behaviour dramatically…and have got their lives far more under control than ever before.

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It did appear during the discussion groups, however, as though participants were aware of the fact that statutory services had traditionally adopted a blaming attitude towards drug users and that perhaps some vestige of this still remained. As a community worker from a voluntary agency put it: I think there’s a value judgment made, particularly about HIV abusers… It wouldn’t be very obvious or blatant but that they actually deserve less, they’re undeserving because they brought it on themselves—that’s the attitude. Gender-Specific Issues During the discussion groups and individual interviews a number of gender-specific issues were identified, principally in relation to pregnancy, motherhood and childcare, and the cultural and institutional constraints experienced by Irish women in general and HIV-positive women in particular. Perhaps the most important point about which there appeared to be consensus was that cultural attitudes towards sexuality and childbearing among working-class Dublin women were equally if not more constraining than any legal or other institutional arrangements. Several participants spoke of the cultural pressures upon these women to take care of their men sexually, as in every other way, and to have children for their men. It was generally agreed that these women tended to be non-assertive and to place an unusually high value on their capacity to satisfy their men through their sexual relationships with them and their willingness to have children ‘for’ them. As one counsellor put it, The pram with the child is a badge of something achieved.’ Thus there appeared to be no discernible annoyance at the absence of abortion facilities or the comparative difficulties involved in gaining access to contraception. Instead, participants spoke of the ambivalence which their female clients expressed towards contraception. A community worker argued that this could at times amount to an abhorrence of contraception particularly [amongst] middle-aged women with their daughters—because it’s much more acceptable to get pregnant by accident than it is to prevent it. The implications for the transmission of HIV were worryingly clear in that it seemed that some women would prefer to expose themselves to the risk of HIV rather than deny their men a ‘full’ sexual relationship.

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One example provided by an HIV/AIDS outreach worker went as follows: I met an [HIV-positive] ex-prisoner the other day and he was with his girlfriend…and he said, ‘Now, will you tell her that I’ve to use contraceptives, condoms… She won’t believe me and she’s really antagonistic against me because I want to use condoms’… She couldn’t accept that and she got very upset about this and said, ‘You know how I can’t express myself when people tell me these things but… I wish to God I had the virus and then at least we wouldn’t have this antagonism between us’. Other participants spoke of women who, while anxious to avoid contracting the virus, just did not have the self-esteem or confidence to insist that their HIV-positive sexual partners use condoms. Interestingly, few carers felt that HIV-positive women in Dublin saw the lack of legal abortion facilities as a major problem, although such women recognized that pregnancy might damage their health or lead to the birth of a HIVpositive baby. One counsellor, in fact, argued that things had ‘come full circle—in the sense that the right to choose to have a baby’ was now increasingly being asserted by HIVpositive women. The phrase ‘right to choose’ is, of course, more conventionally associated with demands for legal access to abortion. Although the professional carers were in general agreement that they worked with women who were nonassertive and alarmingly willing to accept potentially dangerous pregnancies, it should be pointed out that the three HIV-positive women who were interviewed were reluctant to have further pregnancies and were quite sophisticated in their assessment of this whole area. One infected woman, for instance, said: The only contraception available to me at—is Depo-Provera and I found out recently that it is not good for women who have taken or take opiates or for those who have had hepatitis… I don’t want to get pregnant again. I want to be sterilized when I’ve had a good think about it but I do think that I should have the option of different contraceptives. Quite apart from those issues which are directly related to sexuality and reproduction, there was general agreement that caring for HIV-positive women was greatly complicated by the fact that these women were unaccustomed to and unhappy in the ‘sick role’. Essentially, what

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participants argued was that the advent of HIV/AIDS had merely served to highlight the tendency of women to care for others—particularly their male partners and their children—to the detriment of their own health and well-being. Thus, it was argued, Dublin women who were HIV-positive were still primarily concerned with taking care of their husbands, children and other family members and saw their own health problems as being of secondary importance. A social worker who worked in the city’s main HIV test centre spoke as follows: I wonder is it that men actually do something about their worry, they go somewhere, whereas women, maybe, internalize their worries, they distract themselves into their children… There’s this issue again of empowerment—that men are more used to going and asking and taking care of themselves, whereas women don’t have that experience of doing things for themselves. It was suggested by several participants in the group discussions that when HIV-positive women worried, their worry was more likely to be for their children than for themselves. This was certainly borne out by the HIV-positive woman who admitted: I feel worried all the time. It worries me that something will happen to all of us. I keep thinking, ‘What will become of us?’ But if something happened to me or my partner I worry about what will become of my child… My mother and sister are supportive. I know they would look after him. Finally, it was suggested by several carers that women who were HIVpositive—and indeed women in general—did not take up health and social services to the same extent as did men. It was argued, specifically, that HIV-positive women did not often avail themselves of such services because they were too busy with child-minding and other chores and also because they feared being labelled as ‘unfit’ mothers: They’re afraid to attend the clinic because they believe that the mere fact that they’ll admit that they’re positive, that they’re sick, that maybe the social worker might interpret it that they’re not capable of minding their children. (outreach worker) While all the carers who considered these gender-specific issues were clear that this lack of assertiveness or disempowerment was central to the

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problems of HIV-positive women in Dublin, they also agreed that many health and social service structures promoted dependence rather than autonomy. This was expressed most poignantly and explicitly by the maternity hospital social worker who said: These women that we’re meeting lead very public lives, their lives are an open book for the public health nurse, the social worker, and they don’t often get consultants, it’s SHOs [Senior House Officers] who turn over every six months and there’s counsellors and community welfare officers and everybody knows all their business all the time and I think when we talk about them being passive or lacking assertion we’re looking at a sort of learned helplessness—the lesson has been well taught. Conclusion A large measure of agreement was reached concerning the typical profile of an HIV-positive woman in Dublin in May 1989 and concerning her needs and the type of care which might best meet these needs. The HIVpositive women known to participants in this study, were young, from a working-class background and had all contracted the virus either through intravenous drug use or through sexual relationships with drug-using men. It was agreed that at some future time this situation might change, that women from a higher socio-economic background—who had contracted the virus sexually—might begin to come to the attention of the caring services. At the time of this research, however, the general conclusion was that the women who were HIV-positive, or were becoming ill with related conditions, were those who were already among Irish society’s most deprived sub-groups. It was conceded that services for drug users had altered to take account of the new situation created by HIV and AIDS and that the traditional insistence on ‘total abstinence or nothing’ had given way to harm reduction practices, such as methadone programmes and needle exchange programmes. What was less clear, however, was whether philosophically and attitudinally those carers who had been accustomed to total abstinence had accepted the ‘user friendly’ approach to their new work practices. It was suggested by some that drug users were still being treated punitively and moralistically. Although condoms, which offer considerable protection against the sexual transmission of HIV, were considered to be relatively easily available in Dublin, it was generally believed that simple information-

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giving as to their value was insufficient to combat the cultural ambivalence towards condoms. It was argued, on a broader basis, that working-class women in Dublin were culturally accustomed to being sexually and emotionally subordinate to their male partners and that this greatly complicated the situation for women at risk of contracting HIV. A broad range of services—from health education and counselling to medical and nursing care for the terminally ill—was available, but it was felt that these services were poorly coordinated and that there was a lack of practical support for those who were ill. The carers themselves were reasonably satisfied that they had adapted to this new situation but believed that AIDS and HIV merely highlighted existing deficiencies in Dublin’s health and social services; in particular it was argued that many services perpetuated the powerlessness and dependency of women.

Chapter 5 ‘Tempered Optimism’: Perspectives from Professional and Voluntary Carers in Newcastle upon Tyne Malcolm Colledge and Sandy Maddison

Introduction The north-east England city of Newcastle and its environs provide a case study which illustrates responses to HIV, drugrelated or otherwise, which were at an earlier stage of development than those discussed previously. Policy responses, service provision and reactions from some health personnel tend to reflect this earlier state. Newcastle and the adjoining areas comprise a major urban area within the Northern Regional Health Authority (NRHA), although the city itself only has a population of 270, 309. Within Newcastle there are three major hospitals—the Royal Victoria Infirmary, the Newcastle General Hospital and the Freeman Hospital. Each has specialist facilities which result in patients from a wide-ranging area attending for treatment. Newcastle is one of the sixteen districts within the NRHA, which extends across the country and includes Northumberland, Cumbria, Tyneside, Durham and Teeside. The NRHA considers that injecting use is not as great a problem in the region as in other parts of the country, particularly Scotland. Attention is focused on the ‘pockets of drug misuse…particularly Tyneside and Cumbria’ to prevent the problem spreading into other areas: The Regional Health Authority has deployed an allocation from central government, earmarked for services which have a drugs and HIV infection interface, shared out to all districts to ensure that all are taking action, particularly on training initiatives… (Northern Regional Health Authority, n.d., p. 13).

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This view of the size and severity of the problem of the intravenous use of drugs in the area is not shared by the researchers (Colledge and Maddison, 1989). Other initiatives in the Newcastle area which are taking a positive approach to this problem include the local Health Authorities, the Community Support Group, Body Positive North East, Parkwood House Alcohol and Drug Dependency Unit, the Health Education Department, the North East Council on Addiction, and there is one needle exchange scheme in Newcastle upon Tyne. At a meeting in December 1986, the NRHA agreed ‘a comprehensive policy aimed at diagnosis, treatment, control and prevention of HIV infection and AIDS’. The four key areas for each district to act upon were Treatment, Control, Prevention and Training: Treatment: Inpatient care to be limited to certain centres ‘until the epidemic became more widespread and until the staff expertise… developed in Newcastle could be disseminated’. Each district had to identify a multidisciplinary team and a physician to be a source of expertise and advice for consultant colleagues. Each district also had to produce a code of practice for all relevant groups of staff. Control: All populations to have access to specialized counselling and testing services (either based in STD clinics or separate services) and a confidential contact tracing service to be established. Prevention: Each district asked to designate a Health Education Officer with special responsibility for HIV infection and AIDS. Training: A comprehensive training programme for staff in all aspects of HIV infection and AIDS. The NRHA feels this programme has been implemented rapidly and extremely effectively. Since formulating this policy, there has been a steady increase in the number of AIDS patients with the majority of them still receiving treatment in Newcastle, either in the STD clinic or as in-patients. Most districts in the region have not yet cared for a person with HIV/AIDS. The cumulative total of AIDS cases in the NRHA had risen to forty-nine by February 1989 (Doctor, 1989). It is known that some HIV-positive patients have been tested and are receiving treatment in London and the NRHA anticipates that as the infection progresses ‘it is likely that many of them will wish to be in hospitals close to families and friends and numbers of cases admitted to hospitals in this Region will then rise’ (p. 9). The Newcastle Haemophilia Centre has also become increasingly involved with the care and treatment of haemophiliacs infected with

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HIV. The Centre cares for a large number of haemophiliacs and also takes responsibility for the social care of their families, some of whom are also infected with HIV. Great emphasis is placed on counselling people with HIV and their families and, as over half the people with haemophilia who developed AIDS have died, also for the bereaved. HIV and Care: The Carer’s Point of View This then was the local context within which our study of responses to women and HIV/AIDS took place. We employed a similar methodology to the other contributors to this volume as a means of drawing upon the experience of a range of carers—a mix of volunteers, lay and professional carers from a range of relevant agencies—as well as the cared-for. What follows is based upon material from one womenonly discussion group of ten and one mixed group of eleven. Later in this chapter, we discuss the drawbacks of combining people with the virus, relatives/partners and professionals from a specific geographical area in our research groups. Most of the people involved in the care and support of people with the virus displayed some degree of cautious optimism, mainly related to the increase in professional knowledge and the changes in care that have taken place over the last few years. This optimism was tempered by the need for much more support for health care staff, together with guidelines, policies, etc. regarding working practices, and the need for more support services for other carers. Concern was also expressed at reactions based on ignorance and fear, both from the public and from some professionals. Overall, the resource needs expressed can be roughly divided into two areas—education and support services. All types of carer as well as patients need differing networks of support. Education can increase awareness and knowledge but attitudes, once formed, can be very resistant to change. Because of this, it is essential that education about sexual behaviour, drug-related issues and HIV is aimed at all sections of society, particularly school populations, as attitudes can be formed very early. It is encouraging that some schools are already contacting hospitals and consultants to ask what they can do to educate their pupils about HIV and related issues, but medical staff are keen to see this kind of professionally advised education carried out in all relevant schools.

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Professionals The education of medical staff is an ongoing process. Seminars on HIV and AIDS were being held in the General Hospital for all groups of staff with the aim of overcoming ignorance and fear. The seminars were judged to have been effective as, over time, there were changes in the types of questions being asked. There was also some acknowledgment that staff not only need education but also reassurance, especially about their personal safety. The most effective way to achieve this, it was suggested, is to provide examples of positive attitudes towards patients, how staff are expected to behave and the precautions they are expected to take. Although teaching by example is effective, it was also pointed out that education and reassurance on their own are not enough. Education can be less than effective if it is not accompanied by experience as, even when trained, the first meeting with someone who is HIV-positive can be traumatic for medical staff. The general feeling was that guidelines for nursing staff, for example, are not enough and substantive policies regarding working practices and standards are required so that all staff are clear about what is expected of them. Partners, Friends and Family The needs of close friends and family looking after people with AIDS and HIV which were expressed at the two meetings fell into three main areas—education, concern about confidentiality and counselling and support. Although realizing the need for their own education on all aspects relating to HIV and AIDS, they also felt strongly about increasing the level of awareness and knowledge of the general public. In the Newcastle area at least, it appears that neighbours can and do make the association between injecting drug use and AIDS. One carer and her partner had been subjected to horrendous harassment by neighbours who wanted to drive them from their flat. Persistent letters of complaint to the council, poison pen letters and sometimes arson attacks were all tactics employed. In another case, after the death of one twin brother who had haemophilia was reported in the press, the remaining twin and his family were harassed by neighbours, including the use of AIDS graffiti. Problems with neighbours can sometimes be solved by rehousing the couple or the family but this is not always possible. In the Newcastle area, HIV-positive people with housing problems are given medical priority and sympathetic help where possible, a response which is based on the cumulative effort of the Community Support team. Body

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Positive also have emergency accommodation which is sufficient for present needs. The Community Support Centre can also give help in rehousing people in different areas. For safety reasons in midwifery, it was stated that injecting drug users were treated as HIV-positive if their status is unknown. This reaction, however, was not restricted to midwifery and not necessarily to partners of drug injectors, and had clearly led to some unpleasant experiences with health care staff, underlining the continuing need for education of professionals. One carer/partner, for example, felt she was treated as HIV-positive when in hospital as she was put in a side ward, everything used was disposable, and the sister even wore rubber gloves to dispose of used tea cups as hazardous waste. Another major area of concern was the confidentiality of healthrelated records. While admitting that health care professionals need all the relevant information so that they can provide adequate care for both the patient and themselves, people with HIV, partners and relatives were concerned that their health records were kept separately. While they felt this was acceptable so long as it was not made obvious to other patients, the selection of records was in fact made in public view. This question of confidentiality and public records was also felt to present problems within the context of housing departments. There were reports of aroused suspicion in the event of people being treated differently even if, or perhaps because, the reason for doing so is not stated. A partner also expressed concern that the police can put the HIV status of anyone held in custody onto the Criminal Records Office computer record without either their knowledge or consent. This was felt to cause many problems with the confidentiality of health records as many people may have access to this information. It was also felt that the police do not always respect a person’s desire to keep their HIV status secret. Apparently the police only receive about half an hour’s education on HIV, AIDS and related issues during their training—so there is an obvious need to increase their education. One positive aspect is that Body Positive was invited to send speakers to talk to police officers at one station. We now turn to the third identified area of need—counselling and support. Who Cares for the Carers? Caring for people with HIV/AIDS can be stressful and initially traumatic. To maintain the necessary level of care, it is extremely

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important that the carers have the support that they need and, at the moment, it appears that this is not being provided. Caring for the carers, of course, has beneficial effects for the patients as it can be very reassuring for them to talk to sympathetic staff. The World Health Organization strongly advocates the formation of support groups for different health professionals, especially those working with people with AIDS or HIV. It recommends that groups meet regularly, always arranging the date and time for the next meeting, and steps are suggested for groups to follow which include positive aspects of caring experiences as well as the problems encountered (WHO 1988, p. 14). Those who care for friends and family with long terminal illnesses, including AIDS, are also in great need of care and support themselves. If families, friends or partners have to move away from home to obtain medical treatment for someone who, for example, is HIV-positive then they may all experience social isolation at being separated from their families and friends and living in a place where they may know few, if any, other people. For the carer, this feeling of isolation can be intensified by periods of alienation from the patient during long-term illnesses, feelings and experiences which can in turn cause feelings of guilt. As well as isolation and frustration, carers can also feel neglected as the patient seems to get all the attention—carers feel they also have needs and problems which can get ignored. They need to feel that their personal needs and problems are important, not just in relation to how they are caring for the patient. The provision of respite care, such as in a hospice, would give carers some time to partially recover from the stress they may be experiencing. They also need support throughout a long grieving process, which can begin when they realize that an illness is terminal, as well as support after bereavement. Unfortunately, it appears that counselling and support are only available during particular periods of the day. It is important for the support to be there when the carer needs it, which suggests that a twenty-four hour service of some kind is required. Resentment can also occur if carers feel that they are not being given enough information about the treatment that the patient is receiving. After all, it is argued, they take responsibility for the welfare of the patient and feel that they should be told what treatment is being given, how the illness is progressing, etc. This could, of course, cause conflicting demands on medical staff if the patient does not want this information to be shared. Some partners are also worried about the financial aspects of long-term care. If an illness has respite periods and assessment for financial support is carried out during one of these periods, then this can result in needs

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being perceived as far less than is the case at other times. Therefore, the financial support granted may not be enough when the patient is ill. The medical emphasis is on a healthy lifestyle, diet, etc. and the recommended diet can be too expensive for people on a low income. Food supplements are available from the NHS—but one carer had been refused these by their GP. She was told to try again and contact the hospital if she was still unsuccessful. Close friends and relatives caring for people with HIV/ AIDS appear to have a more short-term view of the situation. They have to be concerned not only with the health-related problems but also with housing, trying to provide a healthy diet and the day-to-day problems of coping with their situation. The pressures on carers change as the infection progresses and with these come changes in counselling and support needs. The most common need expressed by the range of carers involved in our research groups was for a named individual to whom they could turn for counselling and support—preferably one who was wellinformed about what facilities and services were available. However, although all the groups involved in the care of people with HIV/AIDS share a common concern with their health and welfare, they do perceive the situation and attendant problems from different perspectives. Medical professionals will basically have a long-term view and will have some expectations of how the infection will progress. They also have to make sure that both patient and partner have all the knowledge relevant to any particular problem (e.g. pregnancy) so that an informed decision can be made. Although acknowledging that carers also need help and support, the main priority will be the care of their patient. Medical staff may have to act according to the patient’s wishes which may not agree with what the carer wants, and this can cause some distress. Nursing staff felt there was a strong need for a network of support where staff could have identified people to whom they could turn for counselling and support. Professionals working in non-medical agencies were in some cases getting much more substantial support. One representative had one hour every two weeks with a named counsellor built into her contract. This would tend to suggest that there are differing levels of management and staff support and those with very little expressed the hope that systems of support would become more commonplace.

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Women with the Virus: How Were Their Needs Seen? While a study investigating the social care needs of women in the context of HIV/AIDS would tend to suggest women may have some specific needs, this was not seen to be the case by those participating in our discussion groups. In neither was there any conscious recognition that caring for adult women who are emotionally upset and/or physically at risk was seen as an ‘exception’ in comparison to the routine caring for male patients. At the same time, however, discussion about women centred on contraception, pregnancy and childcare. HIV-positive women who become pregnant, it was felt, are put under pressure to terminate the pregnancy because of the health risk both to the woman and to the foetus. The medical response is that HIV is a transmissible disease and doctors must point out the risks of foetal infection. There are, of course, varying risks and each case is judged individually, but all women must be given all the facts and base their subsequent decision on them. It was generally acknowledged that there are social pressures on women to have children and some partners of HIV-positive men feel it very unfair that barrier methods of contraception to prevent the transfer of the disease also prevent pregnancy. According to one consultant, some women are now having an HIV test before they become pregnant—so they are making a personal choice and perhaps risking becoming infected in order to have a child. At the Haemophilia Centre, it has been found that all partners of patients want to reproduce and importance is therefore placed on giving all the available information and supporting whatever decision they make about pregnancy or termination. However there does appear to be an age difference in response to pregnancy. Younger women want the pregnancy to continue, but for some older women this can spell the end of the relationship. Again there is a great need for counselling. Similar kinds of age-related problems have occurred with drug-related HIV and when the man is apparently fit and healthy, then the couple want to have the child. HIV-positive mothers have to be concerned about the long-term care of their children. This is especially so in cases where they were infected by their partner who has already died or is likely to die before they do. Husbands and partners may leave instructions about the welfare of their children, but this can be difficult for the mother. Close family members

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may not be aware of the health situation and in-laws may find it difficult to continue with a close relationship. Goggles and Visors The only HIV-positive woman to attend the meetings was the widow of a haemophiliac. She has a young child to support. Although willing to come to the women-only group and talk to others about her experiences, the overwhelming impression was her need for secrecy and confidentiality. Only a few people close to her, not necessarily family, know that she is HIV-positive. She was brought to the meeting by the medical professional who is her main counsellor and carer, and who is very protective of her welfare. She had become pregnant before it was discovered that her husband had become infected through the treatment for haemophilia. Although advised not to have the baby, she continued with the pregnancy, throughout which she received a lot of support. Unfortunately, on going into labour, the situation changed. The birth took place in the Isolation Unit and, although warned that the medical staff would be protected, there were also unknown people there and the staff were wearing goggles and visors. After the birth staff were unwilling to touch the baby, who was born HIV-positive but was HIV-negative at the time of our group discussion. While the baby was positive, the usual childcare procedure was not followed. No doctor has ever been to her home to check on the health of mother and child. The Health Visitor only called three or four times, and each time expressed surprise that the baby had survived so far. This reaction was unexpected as the Haemophilia Centre staff had taken time before the birth to educate the Health Visitors. The mother has never been asked to take her child to the clinic for check-ups which have been carried out at the hospital. If there are any problems, she contacts the Haemophilia Centre as they are much more understanding. Although many expressed the hope that over the last few years these kinds of experiences are less likely to occur, it was also felt that the attitudes and experiences of carers differ and therefore the experiences of patients will differ too. Drugs: An Emotive Issue When our discussions moved onto the topic of drug use, our mix of carers led to somewhat heated debate. Routes of transmission of the

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virus and degrees of associated stigma became central concerns. Emotive discussion turned around distinctions between those people with HIV who were and were not ‘to blame’ for contracting the virus, rather than any distinctions between the circumstances and needs of women and men. As we have remarked earlier, they did not see gender as an issue. Even in the women-only group, discussion of difference revolved around the differing responses to haemophilia and drug-related HIV. Those concerned with caring for haemo-philiacs and their families felt there was a more sympathetic response to people who became HIVpositive through blood and blood products largely because they are generally considered to have become ‘innocently’ infected—although, some suggested that, due to racism, black Africans in the same situation may not be responded to as sympathetically. The possible ‘blaming’ of drug users provoked a heated response from a person concerned with caring for drug-users who, she argued, also consider themselves to have been innocently infected. This preoccupation with social groups tended to cloud the issue of wider responses to HIV-positive drug users. After argument, it was at last generally agreed that gradually attitudes are changing, and that people affected through different transmission routes may be treated more similarly as time goes on. Implications Among the important issues which arose from the two meetings, points of both general and specific relevance were made. The general points include: a) better education and information for the general public; b) improvements in the support networks for all types of carers; c) problems which can arise within a group of people who have differing interests and perspectives; The specific points include: d) training close family and friends to care for people with HIV/ AIDS at home, to allow a choice of care; e) helping medical staff to prepare patients, family and friends for death. More in-depth discussion of these points follows.

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a) The need for more effective education cannot be overemphasized and should begin within the school system. The government advertising campaigns about drug-use and AIDSrelated issues were thought to be not only ineffective but also insulting to some groups within society. Greater use should be made of the knowledge and expertise of people working with drug users when planning an anti-drug campaign. It was also suggested that one way of overcoming some of the ignorance about AIDSrelated issues could be to make educational videos which show care for people with HIV/AIDS in hospitals and within the community. Overcoming some of the ignorance should remove the basis for many of the fear responses from the general public. The videos would need to show a positive attitude towards people with a terminal illness. Other countries such as France have run television campaigns for safe sex which have been both informative and amusing. It is essential to educate sexually-active and potentially sexually-active groups about the inherent risks and an advertising campaign which is seen as boring, patronizing and irrelevant is unlikely to do this. Why can’t we have a British campaign that also uses humour effectively? b) All groups of carers feel that more counselling and support networks are needed. Within hospital and community health care, there is a need for a named key worker who will be aware of all available services and can therefore coordinate the various needs. Nursing staff also need a named person to whom they can turn for counselling and support, perhaps on a regular basis. Home-based carers can often feel neglected and also feel that problems are only acknowledged if they are relevant to the patient. Within the long grieving process of a terminal illness, these carers need reassurance that they are important as individuals, not just as carers. There are non-medical agencies who are providing support services for partners, families, etc. of people with HIV—but the counselling should be there when it is needed, not just between specific times of day. Therefore there is a need for some kind of twenty-four hour counselling service to be available. c) Professionals caring for groups who became HIVpositive for differing reasons find the discussion of differentiated responses a very emotive issue and they are very protective of their particular group. This is a problem which has to be overcome so that progress can be made in caring for all who are HIV-positive. Another problem which has been brought to our attention is that of bringing together patients and their partners, close friends, etc. with health care professionals, so that HIV and AIDS can be discussed on an equal footing. In the two meetings held, personal experiences were very relevant but it appeared that an

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abstract discussion about HIV-positive and AIDS patients was very difficult for those with direct personal involvement. There is also the tendency for the occasion to be used to discuss personal problems with the relevant professionals, who are attending the meeting for other reasons and may feel at a disadvantage because they are not in overall control of the situation. Although some topics obviously had personal relevance and talking about them may have had a great therapeutic effect, contributions of this kind can also make keeping to the main points of the meeting very difficult and could make some professionals wary of attending in future. d) It was suggested that those caring for people with HIV/AIDS at home should undertake some kind of care-related training so that the pros and cons of hospital or home care would be clearer. It was pointed out that giving injections, etc. would have to be medically supervised, but some carers feel very strongly that they should have some kind of training on how to care for the patient at home. A possible drawback would be if the patient and the carer chose differently between hospital and home care, but the interests and welfare of the patient would be the first concern of the medical staff. e) One specific need which was identified was for an information pack which medical staff could use in helping all those involved to prepare for the death of the patient. It was felt that attitudes must change and that death had to be dealt with in a positive way which was also personal and caring. It was repeatedly emphasized that the use of an information pack does not imply any kind of impersonal approach but would be an aid to medical professionals trying to help partners and families make adequate preparations. The timing of the approach is extremely important as the doctor must judge when the patient is still sufficiently mentally alert to cope with these arrangements. Worries were expressed at the meeting about people with HIV being unable to take out insurance policies and also the costs which are incurred, especially as the Death Grant is so inadequate. Information on these matters, together with making a will, arranging a power of attorney, the death certificate, what to tell the undertaker, etc. could all be included in the information pack which medical staff could then use as an aid to assist partners and families. At no time was there any suggestion that patients, partners and families would be forced to make any preparations. It was merely felt that there should be some source of relevant information which, together with personal help and advice, could be given to those involved to help them make whatever preparations they and the patient feel are necessary.

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The concerns of the medical professionals were for people with HIV/ AIDS, their partners and families, but the WHO is also concerned about how the professionals cope with the death of these patients. Professionals are trained to ‘regard death as a defeat’ and it may be very difficult for them to deal with young people who are suddenly faced with their own death. The professionals need ‘…opportunities to deal with issues surrounding death, the dying and bereavement’ so that they can play a supportive role in encouraging people with HIV and AIDS to play as full a part as possible within their families and communities.

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Chapter 6 ‘It Came from Outer Space!’: Perspectives from the General Population and Generic Health and Welfare Professionals in England Sally Hain, Paul Lott and Roger Marsden (NOP Market Research Ltd.) Introduction For all the public awareness that has been generated about HIV, relatively few people will have yet come into close contact with someone affected by it. Without the impact of close personal experience, popular beliefs and feelings about HIV may well survive mass media attempts, be it in health education campaigns or episodes of soap operas, to bring the reality home. The task of gaining some measure of popular perceptions of HIV is an ongoing one but ISDD commissioned NOP Market Research Limited to conduct qualitative research with lay and professional people who had no particular experience of, or specific concern with, people with HIV or AIDS. This chapter reports some of their findings and explores general attitudes to ‘caring’, to HIV and AIDS, and finally highlights the flimsy yet clearly negative images held of the HIV-positive woman, drug use and social care in this context. Methodology Following normal consumer research procedures, a questionnaire was used to screen for respondents who fitted the recruitment requirements. At the recruitment stage, men and women from the general public were told: ‘We are researching the impact of individual health problems on other members of the family’ and at this stage our particular area of interest was not revealed. This was because we wanted to gauge how ‘topof-mind’ HIV/AIDS was with the general public and how willing or able they were to consider the condition affecting themselves and members of their families. The ‘professionals’ on the other hand, were told of our interest:

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The purpose of the research is to develop ideas for training material to support carers of HIV positive people. The work is funded by the Department of Health and is being carried out by the Institute for the Study of Drug Dependence. National Opinion Polls has been briefed to carry out the research in this field. There were no drop-outs caused by unwillingness to discuss the subject. Group interviews were carried out in several locations in England during April 1989. Five groups were conducted with members of the general public selected by social class.:1 — C1/C2 Men with teenage sons and daughters — C2/D Men aged 20–39 years—most of these had young children — C1/C2 Women with teenagers — C2/D Women aged 20–39 years—these also had young children — One group of voluntary carers who had experience of caring for ill or disabled relatives or friends. These were all women and their responses and attitudes seemed little different from the other women’s. (After this group discussion, group members admitted that they had felt inhibited by the presence of a male observer.) Four groups were conducted with ‘professionals’: — One group of hospital/clinic/hospice nursing staff—all women and mothers. — One group of Community Nursing and Health Visitors. — One mini-group of GPs including one woman. — One group of social or youth workers—a mix of men and women. Care and Support: Overall Themes Most of the non-specialist respondents in our sample had direct experience of caring for someone who was ill. The entire business of ‘caring’—the mood, perceptions of responsibilities, the need for carersupport, etc.—depends to a large extent on exactly which member of the family is ill. However, unless circumstances directly prevented it, a broad pattern of attitudes and behaviour did emerge. In almost every case, ‘caring’ was regarded as an exclusively family affair and in most cases, that tended to mean those members of the family living under one roof. Responsibilities towards the ill diminish quite rapidly, our respondents

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seemed to suggest, with distance from the family abode, and fall mainly on women: My brother wasn’t helpful; he’d come and see Mother but that’s as far as it would go. I was the one that was backwards and forwards… any problems, they’d always contact me. It always goes on to the daughter. When Mum had her hysterectomy I had to look after Dad and the rest of the family—my sisters and brother—while she was in bed. And then there was my own family…. A further useful distinction may be drawn with regard to the carer’s ‘responsibility’ for the sick person. Responsibility may be felt as an external imposition originating in family or general social expectations or pressures, or, it may be imposed or mustered from within, i.e. autonomously by the carer. These two states may be characterized as ‘responsibility as duty’ and ‘responsibility as love’. With some oversimplification, it may be said that the former is more likely to occur in non-serious illness, whereas the latter will be easier to produce the more serious the illness. This hypothesis was most clearly supported in cases of illness known to be terminal: As far as I’m concerned, it depends terrifically on what the illness is; how serious it is. For myself, I felt resentment or something verging on resentment when the person was just ill; the moment I knew the person isn’t going to get better, that was something totally different. For the remainder of the discussion, we will for the most part restrict our attention to cases of serious illness. (It hardly needs to be said that HIV/AIDS was universally regarded as serious.) So, in line with the hypothesis outlined just above, our findings were that the primary, long term, attitude to the seriously and perhaps terminally ill was one of genuine caring concern. The nearer the relationship between the ill person and the carer, the greater was the likelihood of such caring. Male responsibilities, as seen by our male respondents, were primarily practical and external to the immediate scene: they would include ferrying people around, doing shopping where needed and similar activities. The men mostly agreed that they would not be particularly good at the sympathetic nursing role and many of them felt that they would find it difficult-toimpossible properly to understand the thoughts

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and feelings of a close female relative who was seriously ill. The most difficult case would be where the wife was ill, since domestic burdens like cooking and cleaning might well fall to them. The men also felt strongly that the responsibility for care should be shared within the family: Really, all I could do was offer support to people who were perhaps more emotionally involved than I was. It was practical—running around and organizing things for people who were too upset to do it. Men tend to do the running around, take you places, whereas the wife can be there during the day. In some cases, it’s just not practical is it? A man can’t—if he’s got to hold a job down—he can’t give full-time care to an ageing parent can he? Women tend to be more caring than men anyway. These (male) views were very largely endorsed by our female respondents. However, women did tend to see their role as carers as being more central and involved than that of their fathers or husbands; and this amounted to a perceived inequality in the sharing of the caring load. Daughters in particular pointed out that if the mother was ill then the entire burden not only of caring for their mother but also of the domestic running of the household might well fall to them. Women ‘coped’. Called up the doctor. He told me what to do and I got on with it. Apart from obvious ‘external’ needs like the services of a GP, hospitalization and the like, it seemed to be generally felt that the family should be able to cope with a seriously ill family member from within its own resources, and would certainly try to do so. There seemed to be almost a reluctance to admit that help (say in the form of emotional counselling, or a health visitor) might be needed—perhaps a tacit admission of inadequacy or failure. Probably, all such external support would tend to be seen as last resort measures. The Professionals The groups that are relevant here are the GPs and the nurses. Certainly the primary distinction between ‘care’ and ‘support’ seemed to be well

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understood by all concerned in that the two notions were easy to separate in theory. In practice, the tidy line between the two is often blurred. The nurses seemed better able both to preserve the distinction and to provide both forms of service. For them, ‘caring’ is translated into ‘hands-on’ nursing, for which they are directly trained. However, the ‘support’ role is taken very seriously and conscientiously; this meant, in their view, sympathetic, emotional support first and foremost. When someone is walking down a particular path, they need to know there’s somebody walking beside them. (nurse) The GPs were somewhat divided about their responsibilities in regard to ‘support’. Perhaps predictably, the male GPs tended to stress the diagnostician role and minimize the support role for GPs. By contrast, the female GP felt that the GP’s role was becoming more and more support orientated, due to a) the increasing complexity of modern medicine and hence increasingly specialized treatments with which the ordinary GP cannot be expected to demonstrate expert familiarity; and b) the feeling that for most people, there’s no one else to turn to. This is of course in line with the general finding that both sexes regard women as better suited to the emotional support role. We’re diagnosticians OK, but we’re also mainly—not mainly counsellors—but a major part of our job is counselling and education. (female GP) If people are going to divulge anything, in my experience it’s going to be to us; we’re the only people they’ve got to turn to. (male GP) Contrasts in attitudes, where they arose, were predictably between those of the professionals and those of the lay public. First, the professionals showed (perforce?) a measure of detachment from their patients’/clients’ problems. As noted, however, this was less true of the nurses who seemed to regard a genuine interest in and concern for the overall welfare of their patients as an integral part of their professional role. A second, slightly less obvious point is that the professionals were able to talk with complete freedom about illnesses and conditions that the general public often found extremely embarrassing or difficult to talk about. This was particularly in evidence where spontaneous mentions of serious illnesses were called for: sexually transmitted diseases, for example, were readily introduced into the

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professional discussions, but received no spontaneous mentions by the public whatsoever. Thus it appears that to some extent the GPs were the ‘odd group out’. They acknowledged this themselves in suggesting that they have a hard enough time merely keeping up with strictly medical developments—counselling and emotional support may therefore tend to have lower priority for GPs both in terms of time and energy. Having established a picture of lay and professional attitudes to ‘care’ more generally, discussion was then steered in the direction of attitudes to HIV/AIDS and the question of how these might affect the delivery of both lay and professional care to people with HIV infection and people with AIDS (it was often difficult to keep the distinction clear). We then attempted, with limited success, to explore first how drug use and second how the person being female might make a difference to the situation. HIV: The General Public There seems little doubt that HIV/AIDS is regarded as a unique disease —uniquely disturbing and unpleasant. By transference therefore, those who are known to be HIV-positive and more especially people with AIDS, are definitely put into a special category of illness. Men said: It’s been put forward virtually as a selfinflicted disease, hasn’t it? I think the disgust bit really comes back to the fact that it’s homosexual. There’s more sex abuse and drug abuse among black people. Now call me racist if you like but that, as I understand it, is the situation. If somebody here [in this group] actually had AIDS, they would not admit it; because the first thing you’d have to do is move. Another thing about AIDS is it’s not so much what they’re like now but what they’re going to develop into. I was under the impression that it originated from the African nation. I’ve read somewhere that it was actually a primate disease. It was a man having sex with a monkey that started it off. I’ve read somewhere that it came from outer space! And, more soberly,

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I was surprised to read in a newspaper that in the whole of the West Midlands, there’s only forty-one confirmed cases of AIDS. The way the press has been going on I thought there were literally thousands. Women in the general population sample were generally less extravagant in their statements: Sexually contracted. People think you can get it from drinking out of the same cup, but that’s just ignorance. But they do say be careful about toothbrushes. The factors contributing to this state of affairs are first of all, ignorance: all respondents were prepared to admit that they didn’t know very much about the condition. The list of facts not known was long, and included: the exact origins of the condition, the incubation period of the virus, the reliability and effectiveness of the current test procedures, the proportion of risk attaching to the various transmission routes, the propensity of the condition to be fatal, the risk and actual extent of spread of HIV into heterosexual communities and the likelihood of a cure being found—all these features were mentioned. The second major discriminating factor was prejudice. First, those presently most vulnerable to HIV—gay and bisexual men, and injecting drug users—are all the subjects of general social disapproval. And disapproval, coupled with ignorance, very often leads to a position of prejudice. Several respondents were willing to admit this personally and none tried to pretend that it wasn’t happening. This therefore is a finding and not a hypothesis. A third point is that (for good or ill) the disease seems to be inextricably linked in the public mind to sexual practices and thus all the ‘normal’ taboos about the subject can and do swing into full operation when considering HIV/ AIDS. And finally, we have the assumption (based on a combination of ignorance and the unfortunately scaremongering press that it has received) that AIDS is invariably terminal and worse, that the time span to death is likely to be short. This is a potent set of factors. Current attitudes to AIDS appear to be a unique combination of a pre-formed set of prejudices with a readily available set of socially unacceptable ‘target groups’ and transmission methods, coupled to a fatal outcome! Thus the prime difference in attitude to a person with AIDS as opposed to (say) a person with cancer is that of the social acceptability of the disease. The single factor

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uppermost in the concerns of the general public is the social stigma that undeniably attaches to HIV/AIDS. The views of professionals were more ‘factual’ and generally more critical. Social workers said: AIDS can be transmitted by sexual intercourse or by blood contact. The evidence that’s been presented by the experts is that it cannot be contracted in any other way. People don’t believe that. People have dual responses. A lot of people in the Health Service have this feeling, ‘you can’t be party to stigmatizing individuals’ but at the end you think of your own children… It is a preventable disease, why should anyone else be at risk? Nurses said: I think it’s [AIDS] special in the sense of the fears that it brings out in people…through ignorance and prejudice people are not prepared to want to know anybody [with it]. For some religious groups, it’s a godsend that it came along. To them, it’s the answer to—you know, here’s what we’ve been saying is going to happen all those years, to these people. There’ll always be a hard case who will say, They get what they deserve’—and that’s the beginning and the end of it as far as they’re concerned. If they belong to a certain group like gay men, drug users, prostitutes, if you have prejudices towards them, it doesn’t matter how much you learn about the disease in terms of clinical facts, your attitude will affect the way you take in that knowledge and use it. Once again, GPs generally presented themselves as outside the stigmatizing consensus of the media and other social groups. The problem here is that the press and the media in general have a rather flippant and irresponsible attitude to a lot of things. And this is one more example. But on the other hand it has been decided to be deliberately scaremongering…to worry people into defensive behaviour.

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In fact, I may not have it quite right, but certainly in Africa, AIDS is a major heterosexual problem, so it makes you wonder why it should find itself in a minority group in California, etc. And because of the stigma a lot of people in—who have AIDS don’t come here for treatment, they go to London. However, there were exceptions who felt they were members of the general public also: As a GP, I freely admit that I do not know a lot about the current research in AIDS. If you add to that the fact that there’s a lot of general ignorance plus a lot of scaremongering about it, doctors are no different from other people; they’re going to get as scared and swayed by public opinion as anybody is. Caring for People Who have HIV/AIDS All of the foregoing should be borne in mind when considering the position of caring for a person with HIV/AIDS. Since none had actually been faced with the situation, respondents were effectively being asked to confront a hypothetical situation as if it were real. Typically, the first reaction was one of shock, and many respondents were honest enough to admit that the shock might well be accompanied by some measure of disgust, or some self-orientated concern about possible hardship for the carer, or distaste. Men said: You may not show it, but I think shock and disgust possibly initially. If you went to the library, to the medical section, and took out a book on AIDS… Yes, and suddenly everyone makes room for you! Women as well as men were preoccupied with questions of guilt and innocence: Unless I was faced with the situation, I don’t know how I would react. It won’t happen to me so why should I be interested! They say it’s God’s retribution on homosexuals and on the drug users.

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In the end you would be sympathetic and do everything you could even though you might not approve…blinker yourself to how they got it. You don’t always develop full-blown AIDS, do you…you could be on a knife edge for years, knowing it could develop into fullblown AIDS. A common early reaction was one of pessimism as to outcome. This initial period of shock would typically be followed by what might be termed a period of evaluation. At this stage, the focus would most likely be on practical concerns, such as: curiosity as to how the illness came about, possible sources of infection (where relevant), possible risks of infection to the carer and the rest of the family, the beginnings of adjustments to an altered way of life and so on. The mature stage would be, as noted, a settling down to provide the loving care and attention needed. It was particularly noteworthy that the large majority of respondents either pointed out or endorsed the need for a ‘positive’ approach to the task of caring; this meant being or at least appearing to be optimistic, cheerful and even good humored. Even in the worst cases, this positive approach was felt to be important. One proviso that should be entered here—and it applies to the entire discussion of findings, especially to the material on HIV/AIDS—is that although many respondents had cared for sick relatives, very few of our general public respondents had had to care for someone who was seriously ill. (None had had to care for a person with AIDS.) Thus it cannot be discounted that there might be elements of wishful thinking in the stages so far described. The general rule has to be that ‘self-incriminating’ remarks can usually be trusted, but that remarks that put a respondent in a good/socially acceptable light should be viewed with some caution. At the very least then we should interpret the respondent’s position here as a genuine characterization of how they would like to think they would respond, since clearly such favourable responses could not be guaranteed in advance of the relevant experience. It was however the judgment of both researchers that the good intent was in fact genuine and that almost certainly considerable efforts would be made to make good on those intentions when confronted with the actual circumstance. In other words, respondents would like to think that they could treat the person with HIV/AIDS in the same manner and spirit that they would were the person to be suffering from any other serious illness. However the oft-spoken ‘It shouldn’t make any difference, should it?’ was clearly linked, in many cases, to an unspoken ‘but it’s going to be terribly hard

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to treat it the same as any other illness and to overcome both my personal fears and prejudices and the social stigma that I know will follow’. Thus, even as a hypothetical case, the advent of HIV within a family could be anticipated as a terrible shock that would be extremely demanding with which to deal and would call heavily on reserves of courage and patience in all concerned. The professionals tended to stress the practicalities of longterm care. To be quite honest, if any of my children came home and told me that is what they’d got, I wouldn’t give a monkey’s how they’d got it, that would be totally irrelevant; it’s what you could do for them from then onwards. GPs noted the continuity, in strictly practical terms, between HIV/AIDS and other conditions. I can’t understand why HIV is treated any differently than hepatitis B. Yes, but what I’m saying is that we don’t seem to have this level of worry about our counselling role in MS [multiple sclerosis] or cancer or cot death or whatever. This is the whole crux of the matter—why is HIV different from hepatitis B? They’re both bloody dangerous—hepatitis B can kill you; exactly the same epidemiology. I mean OK they’re HIV-positive, but they’re still a person and how you relate to them and whether you get on with them is the same—or should be the same—whether they’ve got HIV or not. When strictly clinical aspects were being considered, the professional attitude was universally expressed in the form: HIV/ AIDS should be treated in exactly the same manner as any other serious infectious disease. Parallels between HIV and hepatitis B were constantly being drawn, particularly as to the epidemiology and as to precautions necessary in treatment. However, many of the professionals were willing to admit that a) the prevailing climate of the social taboo b) the inadequacy of definitive research findings c) the fact that it is not currently curable and d) their own personal and private reactions to people with HIV/AIDS were all factors which combined to make clinical detachment considerably more difficult than in other comparably serious conditions.

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I find it difficult because… AIDS is a stigma. I mentioned syphilis earlier and if that was a new disease, it would be treated just the same. The other thing of course is that these days syphilis is treatable. (GP) It was known that some GPs refuse point-blank to have anything to do with people with HIV/AIDS. Some nurses found it hard to overcome feelings of revulsion and fear. Most of the professionals had either already found or were fairly sure that they would find that they would need to make particular efforts to conceal their personal attitudes. The dilemma was well expressed in attitudes to testing for HIV. GPs were mystified that testing for HIV is not only not a routine procedure (as the test for syphilis is) but is regarded as an immoral/unethical invasion of people’s privacy. The problem with HIV is that insurance companies take it very seriously. I would have to explain to people that there’s not a lot of point in doing a test for HIV because the implications of having a test— whether it’s positive or negative—were very great. It would be so much more sensible to have routine testing, so that the test itself is not a stigma. The Drug Dimension Only a few points emerged that were specifically relevant to connections between (hard) drugs and HIV/AIDS. The first point is that the ‘dirty needle’ transmission route received very few spontaneous mentions. This is probably because the entire hard drug culture is seen as outside of ‘normal’ experience. The next point is that, on prompting and with some reflection, respondents could easily see that the drug injection transmission route represented the highest risk, though this was clearly a qualitative judgment (no one knew any figures). When these two ideas were put together in the discussions the outcome was perhaps surprisingly sharp; juxtapose a poorly understood sub-culture that is generally disapproved of with the high risk of spreading a probably fatal disease and you get, it seems, a total lack of sympathy with any resultant people with HIV/AIDS. They’ve got absolutely no one to blame but themselves’, seemed to be the general

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attitude—followed by ‘…and so I’ve got no sympathy for them at all’. Further, many respondents would be: Less sympathetic if somebody’s sleeping with a drug user than if somebody just slept with somebody and got it. HIV-Positive Women—The Idea At the current stage of development both of the disease and of attitudes towards it, our research suggests that the overwhelmingly predominant view remains that HIV/AIDS largely is a male homosexual disease. The true origins of HIV being speculative, it seems that a ‘mythological’ origin in the gay population of California USA has been adopted. Indeed, importantly, it was sometimes quite difficult to get respondents to focus on women in the HIV context; the conversation tended to drift back to males in most cases. It was only after other transmission routes such as blood transfusion were entered into the discussion that it became possible to see that anybody—including of course any woman—could become HIV-positive. But even at this (somewhat better informed) stage of the discussion, women were not regarded as a special case, and again conversation could easily revert to the male case. Use of the male pronoun in examples and general discussion was more or less continuous except where the focus on women and HIV was ‘forced’. As far as I’m aware of current knowledge—and it’s a bit sketchy— is that the woman is far less probable than a man to develop AIDS. The point is that it’s mainly prevalent in male homosexuals, or at least it was to start off with…and drug users; so obviously the more people that have got AIDS at the moment are men. But I think now they’re saying that it’s got no barriers. Imagined Responses to HIV-Positive Women Our research certainly suggests that, at present, a specific image of the HIV-positive woman barely exists. In order to explore this dimension we employed a projective test: general population groups imagined a close female relative/friend informing them of their HIV-positive status, professionals imagined a female patient/client. The predominant manner in which respondents could discuss HIV-positive women was framed in terms of transmission and focused on the least socially damaging transmission route, i.e. blood transfusion. Despite clearly wanting to

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consider the less stigmatized possibilities of transmission, however, many of them found themselves dwelling on what were considered the ‘deviant’ routes of transmission. Promiscuity, sex with a bi- or homosexual man or a ‘hard’ drug user therefore tended to be the assumed transmission route for women by the public sample. Men said: My first reaction would be one of shock to start with. The first reaction is: who the hell has she got it off ? I mean it’s a very bad reaction but…then I’d think: well what can we do for her? I think your first reaction would be: Oh God, have I got it too? Obviously, you’d be thinking about yourself as well. How’s it going to affect me? Have I got to go to the doctor’s as well? Of course, it could be the actual man himself who’s given it to his wife! It was difficult for most general population respondents to imagine a woman contracting HIV by sharing injection equipment. (This may perhaps be due to awareness of female drug injection being low in our English sample; attitudes are more crystallized in Scotland, as other chapters in this volume show.) Dirty needle? She could also be haemophiliac…she could be innocent. (woman) The professionals, in contrast, by and large made no such assumption; the taking of a history would almost certainly reveal the transmission route, and at least theoretically it is not the position of a professional carer to make moral judgments on her/his patients. The prime specific concerns with an HIV-positive woman were universally agreed to be the issues of pregnancy and the risk of transmitting the disease to a newly born child. The case was seen as particularly serious because it was assumed on all sides (though with differing degrees of knowledgeability) that transmission of HIV to the child was practically inevitable. This represented a worst case scenario. The means by which the mother became HIV-positive paled into insignificance beside the consequences for the child.

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Caring for Women In general, women were not regarded as a special case in terms of the care they needed when upset or ill. Only a minority of the general population sample, and rather more professionals, recognized issues specific to women, HIV and care. If you’ve got children you would have to have them tested. With cancer it’s you alone. With AIDS you may have infected your family. (woman) Perhaps [there would be more sympathy] for a female, because it tends to be thought of as the female almost being the victim of the sexual experience. (nurse) And a minority of professionals, almost exclusively female, touched upon broader and potentially more controversial social considerations. The whole psychology is different, men from women. We live in a society where women are in many ways treated in an inferior way to men… I suspect if you’d been dealing with a disease that’s target group had been primarily women, it would have taken even longer for the government. (social worker) It’s very irresponsible. On the one hand you get your AIDS advert—safe sex, limit the number of partners and so on; and then the next advert [for shampoo] you’ve got a woman that’s got a different man every night of the week. (nurse) Conclusion: The Needs of Carers: HIV in General The needs of family members in caring for an HIV-positive member of the family have already been sketched. They may be summarized as follows: Whatever else, confidentiality must be maintained. This applies with particular force to neighbours, work colleagues and ‘officials’ i.e. government departments. (Perhaps strangely, GPs and the Health Service seem to be exempt from this stricture, even though GPs made it clear that for certain purposes, the facts would have to be revealed to ‘legitimate’ enquirers.) There is a clear conflict of interest here between members of the public and the professionals, in that, according to our interviews, the strong inclination of the public would be to keep as quiet as possible,

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whereas the professionals would, they said, make considerable efforts to persuade the individual to give them as much information as possible about sleeping partners, drug use, etc. However, the general view of the professionals was that ultimately, the confidentiality of the patient must wherever possible be respected. Before the onset of any clear medical condition, the prime requirement presented was that of confidential counselling, first from the GP and then from a specialist counselling body should such a body exist locally. Telephone help-lines—discreet and to some extent impersonal— were endorsed as a good idea, since these save the embarrassment of a face to face interview. We should note that counselling, as discussed by the general population sample, was intended to mean a combination of purely factual information with some measure of sympathetic emotional support. At this stage, professionals felt it unlikely that they would have much sustained contact with people with HIV/ AIDS. For the most part, they would only come into contact via a referral of some sort, be it ‘social’, ‘criminal’ or ‘medical’. Thus, the probability is that GPs will increasingly find themselves in the front line so to speak, since the public will generally turn to them first. Next in line, where they exist, will be any specialist counselling bodies (which includes self-help groups—a popular option with the professionals) whether officially set up by the NHS or otherwise. Probably, the main brunt of preAIDS care outside of the family unit will have to be borne by such agencies. We should also note that the need for comprehensive and accurate factual information is paramount—a finding from all groups. GPs want better liaisons with specialist hospital consultants, nurses want better information from GPs, GPs and social workers want better and less contentious research find-ings, and the public would want any reliable information they can get! Were HIV to strike close to home, general population sample respondents could easily see that hard information would be needed both as an antidote to admitted prejudices and as a guide to the most helpful attitudes that could be adopted towards the person concerned. All social groups called for and/or noted the usefulness of information: None of us know enough about it. You’d need professional support from someone divorced from it to put you in a positive direction. (woman) TV advertising made people aware…a bit frightening. (woman) I think your own family doctor would give you the advice and so on. (man)

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In my local hospital, I saw a poster for an ‘AIDS-line’ with a telephone number. (man) Information leaflets, available in doctors’ or dentists’ surgeries, public libraries, chemists’ shops, etc., provided they were not garishly labelled, would be welcome. Professionals called for: Information. Access to resources to help that person: GPs, hospitals, specialist agencies, a social worker helping that person. I’m not sure that doctors have all that information; you maybe need to talk to someone else. Important thing is a resource centre for this problem in all the local areas. Service provided at National Health level shows they haven’t got the measure of the problem. In the present political climate people who are HIV-positive will be dealt with in the community… That’s a very live issue for the people who’ll be caring for them… Home care people. However, many professionals recognized the complexities of the issues involved (e.g. changes in community care provision and in the National Health Service) and the need to talk things through in this light. In this country one of the problems that the medical profession has to face is that the legal profession and hence patients and hence the media as well, they want a Yes or No, and a lot of the time we are just not in a position to give it. I think information [for GPs] has got to be on a fairly local basis. Local consultants should keep us informed as to what exactly is happening to the patients; they don’t at the moment. The problem with information [about HIV for example] is that we get a hell of a lot of it, and I’m afraid an awful lot of it goes in the OUT tray straight away, because you just can’t assimilate all of it. Finally, television and the media could, it was argued, play a useful role. All respondents agreed that whether wellintentioned or irresponsibly scaremongering, the media coverage of AIDS to date had lamentably failed either to inform properly or to change sexual and other habits. As

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one respondent put it, echoing the criticisms of AIDS- and drugeducation specialists, I think what’s needed is more suitable educational material. The iceberg and the granite rock and what have you were totally unsuitable health messages. You do not change people’s attitudes and behaviour by frightening them. Also, it seemed to most that coverage of HIV and AIDS had dropped to almost nothing from the peak of the mid-1980s, perhaps implying that it is no longer a serious issue. Thus, the prevailing view was that the media have an important corrective, educational and informational job to do, and should be doing it. One of the major problems with AIDS is the secrecy that surrounds it. First of all, some of the mythology around it should be dispelled… [How?]…by talking about the realities of AIDS in public. Because the problem is not dealing with people who have AIDS, it’s dealing with everybody else… Overall, general public (lay and non-HIV-specialist professional) attitudes, albeit from a limited sample, suggest that there are some encouraging indications of willingness to perceive people with HIV in helpful and sympathetic terms. It must however be emphasized that, for our sample, such willingness only represents hypothetical ‘good intentions’ and is not well-informed about HIV. In relation to women, HIV and drugs, few respondents could talk in any depth at all about the issues that might be pertinent. The one specific-to-women issue that came out of all the groups was pregnancy and childbirth. Clearly, on this issue, it was felt that information deserves greater priority. Antenatal clinics, maternity units, GPs, midwives, etc. need such information, as do counselling units set up expressly for women with HIV/AIDS. However, positive insights into the problems related to HIV or benign viewpoints about those affected were by no means well developed by our respondents. The barriers to changing this situation were noted earlier— ignorance, prejudice, common perceptions of promiscuous sexuality and other (as they were perceived) ‘deviations’ which lead to HIV, and the close and fatalistic association between HIV and death.

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Such findings are derived from our interviews with sample groups recruited as representative of professional and lay persons in England. For some there is clearly a fair awareness of factual information and of service availability and needs but the well-informed respondents were in the minority. Our other respondents pose the bigger challenge for the promotion of information and service development around HIV. The belief held by one respondent that the virus ‘came from outer space’ is not an encouraging endorsement of the impact of educational initiatives to date. Note 1 Social class: Institute of Practitioners in Advertising (IPA) definition. Class A Higher managerial, administrative or professional Class B Intermediate managerial, administrative or professional Class C1 Supervisory or clerical and junior managerial, adminis trative or professional Class C2 Skilled manual workers Class D Semi- and unskilled manual workers Class E State pensioners or widows (no other earners), casual or lowest grade workers or long-term unemployed

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Chapter 7 Conclusion: Progress, Prospects and Possibilities Nicholas Dorn, Sheila Henderson and Nigel South

What relevance does this 1989 snapshot of responses to women in the context of HIV and drugs have for the 1990s? Advances have been made in the women/HIV/drugs context since that time: the literature on the subject, though still small, is growing; the number of conferences and meetings addressing the subject has also increased considerably; the World Health Organization-inspired World AIDS Day 1990 drew attention to the wide-ranging effects of the HIV epidemic on women worldwide; in Britain there are now a number of HIV posts in local and health authorities with special responsibilities for women; and informal networks of women working in the drugs and/or HIV fields operate in a number of regions. Additionally, some of the public messages surrounding women and HIV, part of the backdrop for care, have changed. Whereas previously public health education targeting heterosexual behaviour using women as its currency drew upon long-established social understandings of sexuality which associate sexually active women with deviance, more recent campaigns in young women’s magazines have addressed young women in a way which condones and normalizes, rather than stigmatizes, an active female sexuality—‘sex feels better when you’re using a condom’ (HEA, 1990). Perhaps more importantly for women living with the virus, some gains have also been made with regard to service delivery. Many HIV-positive women, especially drug users and ex-drug users, were under pressure to avoid pregnancy or to terminate an existing pregnancy, due to the now much questioned (Mok et al., 1989; Peckham, 1989) belief that pregnancy enhances the likelihood of the mother dying of AIDS, leaving an infected child to be taken into care. Despite the fact that Positively Women still receive reports on these contemporary elaborations of the ‘unfit mother’ debate (to which drug-using women were accustomed long before the advent of HIV) from areas outside the capital, women in inner London at least are now much more likely to receive sympathetic

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care and treatment throughout pregnancy, childbirth and beyond. In an increasing number of cases, mother and baby have remained well and together. While this by no means reflects the overall pattern of service responses (Robinson et al., 1990; Tolley et al., 1991) specialist hospitals are increasingly acknowledging not only that such a course of events is possible, but also that many children may become HIV-negative upon the loss of their mother’s antibodies. Some women at least are beginning to get the information they need to make informed choices about this and other issues of importance. It remains to be seen whether British government policies of anonymous screening of pregnant women for HIV (a form of research motivated more by a concern about the extent of HIV in the general population rather than a concern to help women Communicable Disease Report, 1991;) will evolve into a system in which HIV testing, feedback on the results and pre- and posttest counselling is routinely yet sympathetically offered to all (Stevens et al., 1989; The Observer, 1991). It may be better to offer HIV testing as an option to couples contemplating having a child than to restrict it to women. The isolation and lack of support referred to time and again in these pages is, however, still very real for many women living with the virus. Improvement on a number of fronts is required before such experiences can be minimized. Take the example of drug services. Despite the policy impetus for them to maximize contact with women and a more general emphasis upon the development of ‘user-friendly’ drug services in the wake of HIV/AIDS (Advisory Council on the Misuse of Drugs, 1989), many drug services are still not proving attractive to women. It seems particularly significant that needle and syringe exchange schemes have been described as ‘a corner stone of prevention strategies for people who inject drugs’ (Stimson et al., 1991; 225) and yet the 1989 figures for those attending such services in England show a poor take-up by women. The overall 21 per cent female attendance in 1989 was no improvement on the 1987/1988 figure (Donoghoe, 1990). This is perhaps all the more interesting since conventional social expectations of women could well have required them to take up this ‘shopping’ role. However there have been important developments within drug services, the extent of which will hopefully be partially clarified upon publication of a survey of drug and alcohol services conducted by DAWN (Drugs, Alcohol, Women, Now), the national advice and information agency for women on alcohol and drugs until its recent demise (DAWN forthcoming 1992). Innovations which have come to the attention of the editors have tended to draw upon the women’s health tradition to meet

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the needs of women. The development in some drug agencies of integrated women’s health provision in the shape of Well Woman days and women-only days/ afternoons, of which drug specialist and HIV services form a part, is witness to this. Other developments (Henderson, 1990) such as outreach initiatives and responses to women within a few drug dependency units and residential services have also involved an approach which attempts to address all aspects of women’s health within their social context. Still very much small scale and generally low profile, these initiatives could well serve as a basis for a much larger and more comprehensive response to women’s needs. A number of other important dimensions of social care in the women, HIV, and drugs context have yet to receive widespread practical development and policy consideration. The criminal justice system as a whole is more usually considered in terms of social control rather than care but HIV has highlighted a number of thorny issues such as medical care, confidentiality and the question of prevention in prison. In some quarters, HIV has also re-emphasized the need for practical forms of support upon release—from help with drug use to housing and employment. Work with women in this particular area has developed in recent times but women on their way through the criminal justice system would benefit greatly from a higher priority afforded them by many relevant service providers/prevention initiatives. Welfare benefits, legal advice, the ethics of HIV testing are among the many other issues with specific implications for women and which are all important elements of the ‘social care’ of women with HIV/AIDS. The terms of the possible regarding social care more generally in Britain will also be set by a number of legislative and structural changes: The National Health and Community Care Act, a major upheaval of post-war health provision in itself, has created confusion for future purchasers, providers and consumers of services due to its staggered implementation process; the Children Act 1989 which came into effect in October 1991 and attempts to bring together child and family law and gives more responsibility to parents and to the children themselves; the latest Criminal Justice Act which positions the Probation Services as purchasers of services and emphasizes diversion from custody into drug treatment as a viable option for some drug offenders. It is to be hoped that within this radically redrawn landscape of social care, ways can be found of addressing needs which have received generally low priority to date. More medical knowledge, accessible in popular form, is another important prerequisite to the process of helping women who, knowingly

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or unknowingly, are living with the virus. This lack of knowledge about the effects of the virus, voiced by many women interviewed in our collaborators’ research, has yet to be significantly rectified by medical science. As the reported numbers of women with HIV and AIDS grows, experiences communicated largely informally suggest that a range of gynaeco-logical problems, including pelvic inflammatory disease, menstrual irregularities and vaginal candidiasis are the most common symptoms in women. There is growing evidence from women’s HIV support groups, however, suggesting that these are the very symptoms which are overlooked by medics, leading to a late HIV or AIDS diagnosis for many women. Campaigners in the United States (ACT UP, 1991), in an attempt to change this situation, have recently focused upon two issues in particular: the Centre for Disease Control definition of AIDS, which is used internationally, and medical trials. The former does not currently include gynaecological symptoms, thus, campaigners argue, excluding many women from welfare benefits accessible to them only if they have a diagnosis of AIDS. Lack of this diagnosis, together with their ‘child-bearing potential’, is also cited as a reason for women’s exclusion from clinical trials which have included very small numbers of women to date, thus making valid gender comparisons impossible. Given the growing numbers of women becoming infected with HIV worldwide, more medical research into the specific effects of the virus and treatments upon women would seem an essential dimension to the development of appropriate care. Self-help will always be an important dimension to social care, even in an ideal situation where the needs of women with the virus are seriously and comprehensively addressed by professional service providers. Women’s traditional strengths in informal networking and mutual support were not immediately obvious, however, in the HIV context. Initial attempts to establish support groups within existing services met with limited success, perhaps reflecting the high failure rate of groups for drug users initiated ‘from above’ (which is no news to drug workers). However, feelings of isolation and lack of support were the spur to the formation of Positively Women, now a national organization concerned with the welfare of all HIVpositive women, but originally a small support group for women in varying stages of involvement with drug use (Thomson, 1990). Now with funding which includes some from government sources, Positively Women plays an important role in bridging the gap between informal and small scale self help networks and established regional and national institutions.

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Families are also an important potential source of support for HIVpositive people. In some parts of the country family support groups, which were already well established as a response to drug users (Donoghoe, et al., 1987; Dorn, et al., 1987) before HIV became an issue, have formed the basis for caring responses to sons and daughters with HIV; in other cases, mothers, grandmothers and other relatives have taken on the task unaided (see chapter 3). Such support is less of an option for those individuals who, because of their geographical mobility (for example, in search of work or services) no longer live near their families-oforigin. Also, for understandable reasons, HIV-positive women (especially drug users and ex-users) have been reluctant to announce themselves as such. In such circumstances, ‘family support’ can take on the wider meaning of mutual support among friends sharing similar experiences. We and our collaborators found it interesting that the expectations of outside support for informal carers were generally very low. The impetus was toward ‘keeping it in the [extended] family’, with women doing most of the emotional and practical work. This is entirely in keeping with the responses of general population groups when asked to imagine their response to a relative revealing their HIVpositive status (as in chapter 6). Largely absent from these actual and projected responses, however, was any suggestion of the question of ‘caring for the carers’. While this is in line with the expectations of informal carers more generally, the current impetus towards more ‘care in the community’ gives the whole question of support for informal carers a sharper edge. The professional carer may often see support of family members as an important part of community care, but may find that this is beyond their remit and takes second place to the pressing needs of HIV-positive people themselves. The problems facing informal carers in the HIV context and workers attempting to support them are still explored in very few public arenas (McCann, 1990). The following extract highlights the issues: The protracted nature of this illness and the stigma associated with HIV can pose difficult social, emotional and practical issues for carers. Since they are not the ‘identified patient/ client’, their roles and their needs can too often be overlooked in the larger struggle to combat and contain HIV. Like those diagnosed seropositive, they can encounter the same isolation, shame and fear associated with HIV. They will often experience the same intense emotional reactions concomitant with a positive diagnosis or a change in diagnosis. Their survival skills can be stretched to breaking point in

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the attempt to meet the practical and financial demands presented by HIV (Wilson and Ramsay, 1990, p. 24). Given this situation, it would seem that the anticipation of difficulties expressed by partners and parents when speculating about their probable reactions to HIV in the family (see chapter 6) are not without basis. ‘Caring for the carers’ is an issue which also applies to paid carers. Their skills can also be overstretched in responding to the combination of emotional and practical issues represented by HIV and AIDS. Formal as well as informal systems of support for them are crucial aspects of appropriate service delivery. Those in the caring professions who have little understanding of HIV/AIDS need appropriate basic training. Indeed, the volume and scope of this kind of training has changed considerably in recent years. While horror stories of inappropriate responses by professionals such as GPs, dentists, nurses, midwives and others are still encountered, there is an increasing recognition of the need for better information and training at the level of professional bodies (e.g. the nurses’ English National Board, the Royal College of Midwives, and the Central Council for Education and Training in Social Work). This work deserves wider recognition. In drawing to a close, it would seem fitting to consider briefly one other set of possibilities and prospects—the future role of social research in the areas covered by the project reported in these pages. The issues covered in this work have yet to be significantly built upon in other research projects. Qualitative social research addressing the needs and experiences of women in the context of HIV seems not to attract the level of funding needed for substantial projects, with the result that such research tends to be small scale. More generally, there is an urgent need for research and development projects investigating the possibilities and prospects for meeting women’s health needs within the contract culture of health provision in the 1990s. Meanwhile, social research on drugs and HIV still tends to parallel drug service provision in that the focus is very much upon injecting drug use and the use (or not) of condoms. A wider concept of drug use (including alcohol), connected with sexual transmission of HIV, in terms of the disinhibitory effects of all intoxicants, would seem timely. Social research also has a role to play in forming the basis for prevention. ‘Market research’ with specific target groups greatly assists finely-tuned HIV education initiatives. The current tendency is to conduct such research after the event—as a campaign evaluation— whereas more pre-campaign inquiry and concept development work

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could prove fruitful. While the debate over health education method and technique (which predated the advent of HIV/AIDS) will continue and the difficulty in proving that health education ‘works’ will remain, the success or failure of HIV prevention will to a large extent dictate future demands upon formal and informal providers of social care. It is not only formal prevention campaigns and measures which have a possible role to play in the process of change. A much wider set of social and cultural processes underpin the resistance of many to changing their ideas and behaviour in relation to HIV and to women in that context: processes which have associated and continue to associate an active female sexuality with deviance and disease, drug use with ‘unfemininity’ and both of these with ‘unfit motherhood’. It is here that shifts and changes will be needed in order to transform the negative images which still surround and inform responses to women in the context of HIV.

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DORN, N., RIBBENS, J. and SOUTH, N. (1987) Coping With a Nightmare: Family Feelings about Long-Term Drug Use, London, ISDD. ETTORRE, B. (1990) ‘Service Development for Drugs and AIDS’, A paper given to a seminar on AIDS and Drugs, Birkbeck College, London, May. EVENING STANDARD (1990) ‘AIDS: Women in the front line’ 16 May, p. 15. GLENDENNING, C. (1983) Unshared Care, London, Routledge. GOMBERG, E. (1982) ‘Historical and political perspectives: Women and drug use’, Social Issues, 38, 2, pp. 9–23. GREENWOOD, J. (1990) ‘Creating a New Drug Service in Edinburgh’, British Medical Journal, 300, 3 March, pp. 587–9. GROVES, D. and FINCH, J. (Eds) (1983) A Labour of Love: Women, Work and Caring, London, Routledge. HARTNOLL, R. and POWER, R. (1989) ‘Why most of Britain’s drug users are not looking for help’, Druglink, March/April. HAW, S. (1985) Drug Problems in Greater Glasgow, London, Standing Conference on Drug Abuse (SCODA). HAW, S. and LIDDELL, D. (1989) Drug Problems in Edinburgh District: Report of the SCODA Fieldwork Survey, London, Standing Conference of Drug Abuse (SCODA). HEA (1990) ‘Sex feels better when you’re using a condom’, Part of campaign in young women’s magazines, London, Health Education Authority. HENDERSON, S. (Ed.) (1990) Women, HIV, Drugs: Practical Issues, London, ISDD. HENDERSON, S. (1991a) ‘Care: What’s in it for Her?’ in AGGLETON, P., DAVIES, P. and HART, G. (Eds) AIDS: Responses, Interventions and Care, London, Falmer Press. HENDERSON, S. (1991b) ‘Handy Hints: Women, HIV, Drugs’ in BUNING, E., DRUCKER, E., O’HARE, P. and NEWCOMBE, R. (Eds) Reduction of Drug-Related Harm, London, Routledge. HITE, S. (1989) The Hite Report on Female Sexuality, London, Pandora. HOLLAND, J., RAMAZANOGLU, C. and SCOTT, S. (1990a) Sex, Risk and Danger: AIDS Education Policy and Young Women’s Sexuality, WRAP Paper 1, London, Tufnell Press. HOLLAND, J., RAMAZANOGLU, C., SCOTT, S., SHARPE, S. and THOMSON, R. (1990b) ‘Don’t Die of Ignorance “I Nearly Died of Embarrassment”: Condoms in Context’, WRAP Paper 2, London, Tufnell Press. INGLIS, T. (1987) The Catholic Church in Modern Irish Society, Dublin, Hill and Macmillan. JOHNSTONE, F.D., BRETTLE, R.P. et al. (1990) ‘Women’s Knowledge of their HIV antibody state: Its effect on their decision whether to continue the pregnancy’, British Medical Journal, 300, 6 January, pp. 23–24. LONDON STRATEGIC POLICY UNIT (1987) AIDS and Women: Existing Provision, London, LSPU.

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McCANN, K. (1990) ‘Informal care of people with HIV infection’, Paper to the Fourth Social Aspects of AIDS Conference, London. MCKAFEE, A. (1989) ‘Face to Face with the New AIDS Threat’, The Evening Standard, London, 21 February, p. 7. MOK, J., HAGUE, R. and YAP, P. (1989) ‘Vertical transmission of HIV: A prospective study’, Archives of Disease in Childhood, 64, pp. 1140–5. MORRISON, V.L. and PLANT, M.A. (1990) ‘Drug Problems and Patterns of Service Use amongst Illicit Drug Users in Edinburgh’, British Journal of Addiction, 85, 4, pp. 547–54. NORTHERN REGIONAL HEALTH AUTHORITY (n.d.) AIDS: A Continuing Threat to the Public Health. A Report on the Health Service Response in the Northern Region. PECKHAM, C. (1989) Perinatal Transmission in Industrialised Countries, Fifth International Conference on AIDS, Montreal, TB 017. PERRY, L. (1980) Women and Drug Use: An Unfeminine Dependency, London, ISDD. PLANT, M.L., PLANT, M.A. and MORGAN-THOMAS, R. (1990) ‘Alcohol, AIDS Risks and Commerical Sex: Some Preliminary Results from a Scottish Study’, Drug and Alcohol Dependence, 25, pp. 51–55. POLICY SERVICES DEPARTMENT (1986) 1986 Household Survey, Newcastle upon Tyne City Council. RAMAZANOGLU, C. (1990) Methods of Working as a Research Team, WRAP Paper 3, London, Tufnell Press. RIGHTS AND HUMANITY (1989) Survey of British Women’s Organizations with AIDS Programmes in Britain and Overseas, Geneva, World Health Organization. ROBERTSON, J.J. and SKIDMORE, C.A. (1989) AIDS in the Family, 2nd Report to the Scottish Home and Health Department. ROBERTSON, J.R. (1987) Heroin, AIDS and Society, London, Hodder and Stoughton. ROBINSON, D., MAYNARD, A. and SMITH, G. (1990) ‘Investi-gating AIDS and social care’, International Journal on Drug Policy, 1, 6, pp. 14–15 ROULSTON, J. (1990) ‘Overall Views of Support Needs of HIV Infected and Affected Children and their Families’, Women and HIV/AIDS Network Update, April. RYAN, L. (1991) Desparately Seeking Services? A Directory of HIV Services for Women in the Thames Regions, The Women’s HIV/ AIDS Network, London, Health Education Authority. SONTAG, S. (1989) AIDS as a Metaphor, Harmondsworth, Penguin. STEVENS, A., VICTOR, C., SHERR, L. and BEARD, R. (1989) ‘HIV testing in ante-natal clinics: The impact on women’, AIDS Care, 1, 2, pp. 165–71. STIMSON, G.V. et al. (1988) Injecting Equipment Exchange Schemes: Final Report, London, Goldsmiths’ College, University of London.

104 BIBLIOGRAPHY

STIMSON, G., LART, R., DOLAN, K. and DONOGHOE, M. (1991) The future of syringe exchange in the public health prevention of HIV infection’ in AGGLETON, P., DAVIES, P. and HART, G. (Eds) AIDS: Responses, Interventions and Care, London, Falmer Press. STIMSON, G.V. and OPPENHEIMER, E. (1982) Heroin Addiction: Treatment and Control in Britain, London, Tavistock. TAYLOR, A. (1991) ‘Needle work: Women drug injectors in Glasgow, PhD thesis, University of Glasgow. THE INDEPENDENT (1990) ‘Why condoms are a woman’s best friend’ (p. 16) and ‘Women infected with AIDS doubled last year’ (p. 8) 17 May. THE OBSERVER (1991) ‘AIDS testing looms for every pregnant woman in Britain’, 30 July. THOMSON, K. (1990) ‘Self help: The example of Positively Women’ in Henderson, S. (Ed.) Women, HIV, Drugs: Practical Issues, London, ISDD. THOMSON, R. and SCOTT, S. (1990) Researching Sexuality in the Light of AIDS: Historical and Methodological Issues, WRAP Paper 5, London, Tufnell Press. THOMSON, R. and SCOTT, S. (1991) Learning about Sex: Young Women and the Social Construction of Sexual Identity, WRAP Paper 4, London, Tufnell Press. TOLLEY, K., MAYNARD, A. and ROBINSON, D. (1991) HIV/ AIDS and Social Care, Discussion Paper 81, Centre for Health Economics, University of York and Institute for Health Studies, University of Hull. WHO FEATURES (1990) ‘AIDS and the status of women: Challenges and perspectives for the 1990s’, Geneva, World Health Organization, No. 149, p. 1. WHO GLOBAL PROGRAMME ON AIDS (1990) World AIDS Day Newsletter, Geneva, World Health Organization. No. 2 September/ October, p. 2. WHYTE, J. (1980) Church and State in Modern Ireland: 1923–1979, 2nd ed., Dublin, Gill and Macmillan. WILSON, J. and RAMSAY, J. (1990) ‘“Invisible” Caring in Edinburgh’ in HENDERSON, S. (Ed.) Women, HIV and Drugs: Practical Issues, London, ISDD. WORTH, D. (1989) ‘Sexual Decision-Making and AIDS: Why Condom Promotion among Vulnerable Women is Likely to Fail’, Studies in Family Planning, 20, 6, pp. 297–307. WORLD HEALTH ORGANIZATION (1988) HIV and AIDS: Counselling skills for Health Professionals’. Aspects of Sexuality and Family Planning, Module 6.

Notes on Contributors

Shane Butler is a Lecturer in the Department of Social Studies, Trinity College, Dublin, where he has responsibility for Trinity’s Diploma in Addiction Studies. His research interests are in the areas of drug and alcohol policy and mental health services. Malcolm Colledge is Visiting Fellow in Medical Sociology in the Department of Sociology at the University of Salford. His recent research has been into the nature of ischaemic heart disease and the demand for coronary by-pass surgery in the North West of England. Nicholas Dorn PhD is a social scientist with interests in social policy, development and the criminal justice system. He studied at London University, Middlesex Polytechnic and Kent University. Internationally, he has acted as a consultant in Pakistan, the Philippines and in relation to Afghanistan. He is Development Director of the Institute for the Study of Drug Dependence (ISDD), London. Recent ISDD research projects have been funded by foundations and three government departments: the Home Office, Department of Health and the Department of Education and Science. Dr Dorn has led a research team carrying out a study of drug trafficking and middle-level drugs enforcement in Britain, published in 1991 by Routledge as Traffickers. Sheila Henderson was formerly Research and HIV Development Officer at the Institute for the Study of Drug Dependence in London, where she worked on a number of projects concerned with women’s health, HIV and drug use. She has lectured on gender perspectives in history, sociology and cultural studies and written mainly in the area of women, HIV and drugs. She is currently working in Manchester on a project concerned with young women, sexuality and recreational drug use. Sandy Maddison is a Research Assistant in the Department of Applied Social Studies, Newcastle-upon-Tyne Polytechnic.

106 NOTES ON CONTRIBUTORS

Val Morrison is a psychology graduate (1983) who for seven years has researched the relationship between illicit drug use and crime, and the changing patterns of drug use in the community including the impact of HIV on drug use and sexual behaviour. Several publications have arisen from these studies. She is currently working in Health Psychology at St Andrews University, Scotland, examining coping with chronic disease. Nigel South is a Lecturer in Sociology at the University of Essex. He was previously a Research Sociologist at the Institute for the Study of Drug Dependence in London where he collaborated on a series of projects concerned with drug-related social policy and criminal justice issues. He is co-author of Traffickers: Drug Markets and Law Enforcement (1991; with N. Dorn and K.Murji), co-editor of A Land Fit for Heroin? Policies, Prevention and Practice (1987; with N.Dorn) and author of Policing for Profit (1988). Marguerite Woods is Project Leader with the Ana Liffey Drug Project, Dublin and is a post-graduate student of the Department of Sociology, Trinity College, Dublin. She is a founder member of the Dublin Women and AIDS Group and the Dublin AIDS Helpline. She previously worked as administrator of the Dublin Well Woman Centre and as a counsellor with the Dublin Rape Crisis Centre.

Falmer Press Books on the Social Aspects of AIDS

Social Aspects of AIDS Edited by Peter Aggleton, Goldsmiths’ College, University of London and Hilary Homans, Bristol Polytechnic, UK ‘The strength of this book lies in its immediacy to a rapidly evolving field…a collaboration between medicine and sociology is required to hasten the development of effective means to prevent and treat HIV infection…individuals from each field must learn about each other’s work. This book is an excellent place to start.’ The Yale Journal of Biology and Medicine Contents: Introduction Peter Aggleton and Hilary Homans; Love in a Cold Climate Jeffrey Weeks; Organizing AIDS Ken Plummer, AIDS, ‘Moral Panic’ Theory and Homophobia Simon Watney; Illness, Metaphor and AIDS Keith Alcorn; Perceptions of Risk—Media Treatments of AIDS Kaye Wellings; Young People’s Health Beliefs and AIDS Ian Warwick, Peter Aggleton and Hilary Homans; The Numbers Game—Gay Lifestyles, Epidemiology of AIDS and Social Science Tony Coxon; AIDS—A Trade Union Issue Hugh Robertson; Health Education, HIV Infection and AIDS Hilary Homans and Peter Aggleton; Visual AIDS—Advertising Ignorance Simon Watney. 1987 202 pp ISBN 1 85000 363 7 (cloth) ISBN 1 85000 364 5 (paper) AIDS: Social Representations, Social Practices Edited by Peter Aggleton, Goldsmiths’ College, University of London, Graham Hart, University College and Middlesex School of Medicine and Peter Davies, University of Essex, UK ‘…highly recommended’ AIDS Dialogue

108

‘Jeffrey Weeks…provides an excellent account of the social and intellectual processes which have taken shape around HIV during the last few years… I particularly liked the incisive style of Simon Watney’s contribution, and the commentary on the use of HIV/AIDS vocabulary in his view of the cultural agenda of AIDS. Equally refreshing was Cindy Patton’s analysis of the development of safer sex messages, firmly grounded in practicality and commonsense. Her treatment of the sexual power politics surrounding the heterosexual woman should be compulsory reading for both safer sex educators and condom manufacturers…highly recommended to the discerning HIV educator.’ Hilary Coles, Merton and Sutton Health Promotion Unit Contents: AIDS: The Intellectual Agenda Jeffrey Weeks; One Epidemic or Three? Cultural, Social and Historical Aspects of the AIDS Pandemic Ronald Frankenberg; Undergraduates’ Beliefs and Attitudes About AIDS Stephen Clift and David Stears; The Subject of AIDS Simon Watney; Perverts, Inverts and Experts: The Cultural Production of an AIDS Research Paradigm Meyrick Horton with Peter Aggleton; Making Sense of a Precipice: Constituting Identity in an HIV Clinic David Silverman; Gay Men’s Sexual Behaviour in Response to AIDS—Insights and Problems Ray Fitzpatrick, Mary Boulton and Graham Hart; Some Notes on the Structure of Homosexual Acts Peter Davies; HIV and the Injecting Drug User Graham Hart; Methods of Drug Use: Injecting and Sharing Robert Power, Syringe-Exchange Schemes in England and Scotland: Evaluating a New Service for Drug Users Gerry V.Stimson, Lindsey Alldritt, Kate Dolan and Martin Donoghoe; Injecting Drug Use and HIV Infection— Intervention Strategies for Harm Minimization Geraldine Mulleady, Graham Hart and Peter Aggleton; Marginalized Groups and Health Education About HIV Infection and AIDS Tina Wiseman; Evaluating Health Education About AIDS Peter Aggleton; Resistance and the Erotic Cindy Patton; Reading AIDS Jan Zita Grover. 1989 284 pp ISBN 1 85000 430 7 (cloth) ISBN 1 85000 431 5 (paper) AIDS: Individual, Cultural and Policy Dimensions Edited by Peter Aggleton, Goldsmiths’ College, University of London, Peter Davies, University of Essex and Graham Hart, University College and Middlesex School of Medicine, UK ‘Impossible to sum up, but fascinating to read, AIDS: Individual, Cultural and Policy Dimensions rates as one of the most interesting books yet to appear from the ever-burgeoning literature on AIDS and HIV.’ Health Education Journal

109

‘…well presented with each chapter having an exhaustive notes and references section… This is an invaluable addition to the complex history of HIV and its effects on our society over the past decade. I recommend it.’ AIDS Dialogue Contents: What Science Knows: Formations of AIDS Knowledges Cindy Patton; Safer Sex as Community Practice Simon Watney; AIDS Invulnerability: Relationships, Sexual Behaviour and Attitudes among 16–19-Year-Olds Dominic Abrams, Charles Abraham, Russell Spears and Deborah Marks; Blame and Young People’s Moral Judgments about AIDS Stephen Clift, David Stears, Sandra Legg, Amina Memon and Lorna Ryan; Young People in Independent Schools, Sexual Behaviour and AIDS Candace Currie; ‘Adolescents’, Young People and AIDS Research Ian Warwick and Peter Aggleton; On Male Homosexual Prostitution and HIV Peter Davies and Paul Simpson; Variation in Sexual Behaviour in Gay Men Ray Fitzpatrick, John McLean, Mary Boulton, Graham Hart and Jill Dawson; Needle Exchange in Historical Context: Responses to the ‘Drugs Problem’ Graham Hart; Drug Injectors’ Risks for HIV Neil McKeganey and Marina Barnard; Some Observations on the Sexual Behaviour of Injecting Drug Users: Implications for the Spread of HIV Infection Hilary Klee; AIDS Education and Women: Sexual and Reproductive Issues Diane Richardson; AIDS Prevention Strategies in Europe: A Comparison and Critical Analysis Hans Moerkerk with Peter Aggleton; The Social Organization of HIV Counselling David Silverman; Local Authorities and HIV-Related Illness Terry Cotton with Vijay Kumari; Responses to AIDS, 1986–1987 Zoe SchrammEvans; No One Knew Anything: Some Issues in British AIDS Policy Philip Strong and Virginia Berridge. 1990 274 pp ISBN 1 85000 763 2 (cloth) ISBN 1 85000 764 0 (paper) AIDS: Responses, Interventions and Care Edited by Peter Aggleton, Goldsmiths’ College, University of London, Graham Hart, University College and Middlesex School of Medicine and Peter Davies, University of Essex, UK The fourth conference on Social Aspects of AIDS took place at South Bank Polytechnic in London in March 1990, attracting a wide range of social researchers, health and social service workers and members of statutory and voluntary organizations working in the field of HIV/ AIDS. The themes of the conference emphasized popular and professional responses to the epidemic, national and local interventions, and issues of care.

110

This book contains many of the papers given at the conference. They identify the present research priorities of sociologists, psychologists, educationalists and cultural theorists. They also demonstrate the diversity of work that is currently underway, as well as the quality of individual research initiatives. Rarely has so much energy been expended so productively in the pursuit of a common set of goals. Contents: AIDS: The Second Decade: Risk, Research and Modernity Simon Watney; Changing to Safer Sex: Personality, Logic and Habit Mitchell Cohen; What Is a Sexual Encounter? Andrew Hunt and Peter Davies; Gay Men’s Views and Experiences of the HIV Test Jill Dawson, Ray Fitzpatrick, John McLean, Graham Hart and Mary Boulton; Bisexual Men: Women, Safer Sex and HIV Transmission Mary Boulton, Zoe Schramm Evans, Ray Fitzpatrick and Graham Hart; Prostitutes’ Perceptions of Risk and Factors Related to Risk-taking Hilary Kinnell; London’s Homosexual Male Prostitutes: Power, Peer Groups and HIV Tim Robinson and Peter Davies; Towards a General Model of Sexual Negotiation Peter Davies and Peter Weatherburn; Between Embarrassment and Trust: Young Women and the Diversity of Condom Use Janet Holland, Caroline Ramazanoglu, Sue Scott, Sue Sharpe and Rachel Thomson; Condoms, Coercion and Control: Heterosexuality and the Limits to HIV/AIDS Education Tamsin Wilton and Peter Aggleton; Perceptions of AIDS Vulnerability: The Role of Attributions and Social Context Amina Memon; Moral Perspectives and Safer Sex Practice: Two Themes in Teaching about HIV and AIDS in Secondary Schools Stephen Clift and David Stears; Answering Children’s Questions about HIV/AIDS in the Primary School: Are Teachers Prepared? Clare Farquhar; Prison, HIV Infection and Drug Use Graham Hart; The Future of Syringe Exchange in the Public Health Prevention of HIV Infection Gerry Stimson, Rachel Lart, Kate Dolan and Martin Donoghoe; Reaching the Hard to Reach: Models of HIV Outreach Health Education Tim Rhodes and Richard Hartnoll; Misfortune, Medicine and AIDS Counselling Anssi Perakyla; Care: What’s in It for Her? Sheila Henderson. 1991 290 pp ISBN 1 85000 817 X (cloth) ISBN 1 85000 872 8 (paper)

Index

abortion 43, 54, 55 abstinence 2, 36, 45, 57 accommodation, supported 25, 30, see also housing Advisory Council on the Misuse of Drugs 1984 Prevention report 1–2 1988 report 2 Africa x, 80 Africans 67 AIDS, definition (Centre for Disease Control) 95 AIDS Action Alliance 46 alcohol use 14, 26, 98–16 alienation 64 Americas 6 Ana Liffey Project 45 anger 17, 22, 30 antenatal clinics 90 anti-drug campaigns 69 artificial insemination 13 attitudes of general public to HIV 21, 77–5, 98

‘buddy system’ 51 burnout, in carers 28, 31 California 84 Campaign for Homosexual Law Reform, Ireland 44 cancer 79 care needs 19–6 carers caring for the 28, 63–8, 97–15 home-based 69, 69 in Ireland 48–51 needs of 87–8 paid 98 points of view 60–8 sex difference in seeking support 28–5 stress 28, 31, 36, 37 ‘unanticipated’ 37 caring 74–76 for HIV-positive people 81–84 caring role emotional involvement 27 empowerment 27 perceptions of the 26–6 Centenary Project 40 Centre for Disease Control 95 child psychologists 39 childbirth, treatment of HIV-positive women in 11, 66–67, 90 childcare 3, 10–12, 19, 37, 38–8, 40, 53, 65, 66

bereavement counselling 60, 64, 70 black women 2 blacks 67, 78 blood transfusion, transmission by 67, 85 Body Positive North East 59, 62, 63 Brenda House 26 Britain x 111

112 INDEX

children and death of mother 11, 38–8 HIV-positive in school 12, 32, 34 HIV status of 12 informing 11–11, 38 responses of 11 testing of 86 Children Act (1989) 95 community care 2, 51, 89, 97 Community Drugs Problem Service (CDPS) 25, 26 condoms 43–3, 55, 57, 98 non-use of 38 confidentiality 12, 62, 63, 66, 87, 94 containment attitudes 32 contraception 65 in Ireland 43–3, 54, 55 contraceptives, and HIV symptoms 10 control over life 22, 59 Coolemine Therapeutic Community 45 counselling 25, 32, 32, 40, 57, 60, 62, 63–8, 87–5 post-test 9,49, 93 pre-test 40, 48–9, 93 too much or none 49 Criminal Justice Act 95 criminal justice system 94 Criminal Records Office 63 cultural factors 3, 53–8 DAWN (Drugs, Alcohol, Women Nationally) 1, 94 Daytop Village Therapeutic Community, New York 45 death, 22, 32–32 attitudes to 49, 70 and childcare arrangement 11–11 close connection of HIV with 32– 32, 90 preparation for 68, 69–4 Death Grant 69 denial 27–4, 38 dentists 9–10, 98

dependence, female 15, 56, 57 depression 38 deviance image 85, 90, 91, 98 and drugs 13–16, 23 diagnosis late for women 95 and welfare benefits 96 dietary requirements 50, 52, 64 disgust 81 divorce 43 drug dependency units 94 drug issues, in Ireland 51–4 drug rehabilitation 15–16, 45 drug-related HIV, different response to from haemophilia 67–1 drug services 7, 93–11, 98 drug use and HIV 15, 30–33, 51–4, 68, 84 and HIV-negative people 30–8 and images of deviance 13–16 injecting 1, 7, 14–19, 20, 24, 25, 46, 62–5, 79, 84, 98 in Ireland 44–4 legal and illegal 14 women and 1, 15, 16–19, 24, 37– 7, 86 drug using populations, sex ratio 37 Dublin 41–57 Edinburgh 4, 24–41 education level of 52 need for 33–3, 68, 98 employment 94 empowerment 27, 55–8 euthanasia 32–32 families 62–5, 74 of haemophiliacs 60 family planning legislation, Ireland 43 family planning services 8, 9, see also contraception; contraceptives family support 20–6, 31, 51, 51

INDEX 113

family support groups 35, 96–14 fear 3, 11, 21, 48, 69, 83 female drug injection see drug use, women and feminine identity, and sexuality 12–13 femininity, image of 9, 56 feminism 2, 23 Fighting Back 26 finance, and long-term care 64 foster care 8, 12, 19, 40 friends 62–5, 97 Frontliners 26 frustration 64 funding 29, 36–5, 39–9 Gay Health Action Group, Ireland 44 gay men 23, 28, 32–1, 84 gender dimensions 8, 53–8 government advertising campaigns 68– 2 GPs 9–10, 40, 76–1, 80, 82, 83, 87, 88, 98 female 76 male 76 grandparents 37, 96 grieving process 69 guilt 11, 38, 64, 81 haemophilia, different response to 67 haemophiliacs infected with HIV 60 ‘harm reduction’ practices 32, 45, 57 health education 52, 57, 98 Health Visitors 11, 67 hepatitis B 82–9 heroin 45 HIV attitudes of general public to 21, 77–5, 98 and drugs 30–33 and women 37–8 HIV-negative people, and drug use 30– 8 holistic approach 28–6, 30 homosexuality 13, 43, 44, 78, 79, 84,

see also gay men lesbians hospices 64 hospitals 58 housing 36, 62, 63, 64, 94 pregnancy and 36 humour 22–8, 69 ignorance 79, 80, 90 illness, terminal 75 information needs 19, 33–3, 37–7, 57, 62, 64–7, 88–6 for preparation for death 69–4 injecting drug use see drug use, injecting Institute for the Study of Drug Dependence 73 insurance policies 69, 83 intravenous drug use see drug use, injecting Ireland 41–57 isolation 3, 23, 37, 64, 93, 96 judgmental attitudes 9, 32–1, 52–4, 78, 79 legal advice 95 legal profession 89 Leith Group 40 Leith Hospital, needle-exchange scheme 25 lesbians 2, 13 life expectancy, uncertainty over 11– 12 lifestyle, reassessment of 22 local support groups for HIV-positive women 7 London 3, 6–23 Inner 5, 93 Lothian Social Work Department 40 magazines 25 maintenance programs see methadone maintenance programmes males responsibilities 75–9

114 INDEX

media 35, 68–2, 88, 89, 89 medical experiences 8–10 medical professionals 9, 64–8, 76–1, see also dentists; GPS midwives; nurses medical trials 95 medication 20–5 men, responses of 5 menstrual irregularities 95 methadone 25, 30 methadone maintenance programme 36, 40, 45, 48, 57 Midlands 4 midwives 62, 90, 98 Misuse of Drugs Act (Ireland) (1977) 44 mother, image of ‘unfit’ 37, 56, 93, 98 motherhood 11–12, 53 ‘myth of heterosexual AIDS’ 5, 7 National Drug Advisory and Treatment Centre, Ireland 45 National Gay Federation, Ireland 44 National Health and Community Care Act 95 National Health Service 89 needle-exchange schemes 25, 31, 36, 45, 57, 59, 93 needle-sharing 4, 13, 44, 45 neighbours, harassment by 62 New York City x Newcastle Community Support Group 59 Newcastle Haemophilia Centre 60, 66, 67 Newcastle upon Tyne 4, 58–70 NOP Market Research Ltd 4–5, 71– 90 North East Council on Addiction 59 Northern Regional Health Authority (NHRA) 58–2 numbers of AIDS patients, Newcastle 60

of HIV-positive people, see seropositivity rates of intravenous drug users in Edinburgh 39 nurses 65, 69, 76–1, 79, 83, 98 nursing support 50 obstetrics 8 outreach services 45, 94 pain control 20–5 Parkwood House Alcohol and Drug Dependency Unit 59 partners 3, 62–5 female non-drug using of HIV males 39 HIV-positive 16–19 PCP (pneumocystis carinii pneumonia) 23 pelvic inflammatory disease 95 pessimism 49, 82 ‘play therapists’ 39 police 63 Positive Help 26, 35 positive thinking 21–8, 82 Positively Mothers 40 Positively Women 7, 23, 93, 96 pre-school nurseries 37 pregnancy 53, 65 and housing 36 information 90, 91–10 informed choice in 3, 11, 19, 37–7, 65–9 pressure to terminate 10–11, 40, 65 and risk of transmission to child 86–3 pregnant women, ratio of infected 5 prejudice 48, 79, 80, 90 prescription, problems of collecting 20, 30 prevention campaigns 59, 98 prisons 40, 48–9, 94 probation services 95

INDEX 115

professionals 61–4, 69–3, 70, 73, 74, 82, 99, 86, 87, 88–6, 98 see also medical professionals promiscuity 13, 44, 79, 85, 90 prostitution 13, 26, 40 and demand for unsafe sex 15 as a means of funding drug use 13– 14 psychological testing 40 public attitudes to HIV 21–8, 77–5, 98 public awareness 71 refusal of service 9–10 regional variations 4 rejection 5, 21 religious factors 3, 41–57, 79, 81 reluctance to speak openly 51–2 rent-boys 26, 40 reproduction 10–12, 23 and HIV 12–13 need for information 37–7 and spread of infection 8 see also pregnancy residential care facilities 19, 94 resistance 34, 98 respite care 40, 64 responsibility 74–8 male 75–9 in sex 86 risk reduction 1, 36 risk-tasking behaviour 26 role models, positive 23 Roman Catholic Church 41–57 subsidiarity principle 43 Salvation Army 26, 34 scaremongering 80, 89 schools HIV-positive children in 12, 32, 34 information for 68 Scotland 7, 86 SCOTPEP 40

Scottish AIDS Monitor 26 Scottish Health Education Group, campaign 24–1 Scottish Health Services Laboratories 24, 39 screening, anonymous 5 of pregnant women 93 secrecy 66, 89 self-help groups 88, 96 self-inflicted disease 78 self-mutilation 15 ‘self-servicing’ by women 23 seropositivity rates Edinburgh 24 Republic of Ireland (1988) 46 Table 1 women x, 5, 6 sex non-penetrative 13 pleasure and possibility of pregnancy 13 safer 12, 13, 19, 38, 44, 69, 86 unprotected with drug-injecting partners 1 sex workers 40, see also prostitution; rent boys sexual contact with a bi-or homosexual man 39, 85 with a hard drug user 85 sexual morality 41 sexual orientation 28 sexuality cultural attitudes toward 54–6 female 91, 98 and feminine identity 12–13 and non-monogamy and selling sex 8 shock 81, 86 social class 73 social research 98–16 social workers 79 SOLAS 40

116 INDEX

Southeast England 4 stigmatization 3, 21, 32, 33, 40, 67, 79, 80, 83, 91, 97 stress 26, 28, 31 Sub-Saharan region 6 suicide 32–32 support 74–76 in Ireland 48–51 support needs 19–6 symptoms 19, 32, 38 most common in women 95 syphilis 83 ‘target groups’ 78–3, 98 teachers 32, 34 telephone help-lines 87, 88 television 88, 89 testing for all 93 attitudes to 83–84 ethnics of 95 procedure 8–9 training 60, 68, 69, 98 transmission 79, see also blood transfusion; drug use, injecting; sexual contact treatment 59 urban deprivation 25, 41, 49, 51 USA x, 95 vaginal candidiasis 95 victim syndrome 21–7 voluntary agencies 20, 40 welfare benefits 95, 96 Well Women days 94 Western Europe 6 WHO (World Health Organization) 64, 70 World AIDS Day (1990) 6, 7, 91 wills, making 69 women caring for 86–4

caring load 2, 74, 76 caring role 55–8 and HIV 37–8 with HIV 65–68, 84–1, 90, 91 imagined responses to 85–3 numbers with HIV/AIDS UK x, 5 worldwide 6 poor take-up of support 23, 94 Women, Risks and AIDS Project 1 Women and AIDS Group, Ireland 46 Women and HIV/AIDS Network (Scotland) 41