Study Paper No. 5 THE NATIONAL CENTRE FOR HIV/AIDS SOCIAL RESEARCH Through its recognition of the significant role that cooperation between government, medical and social researchers and the community continues to play in responding to the needs of people living with HIV/AIDS and their carers, the University of Queensland unit of the National Centre established an innovative method to harness the collective wisdom of key stakeholders prior to the construction of its People Living With HIV/AIDS Research Projects. Through the vehicle of national colloquia, the Centre was able to bring together community workers, academics, medical and health professionals and PLWH/A from across Australia to discuss and then offer effective responses to issues such as Grief and Loss and Death and Dying. The colloquia provided the trigger for the initiation of an effective community consultative process which not only offered the possibility of collating large sectors of diverse opinions at a single point in time, it also provided motivation and stimulation for the development of a series of hypotheses from which a research project could confidently commence. The Centre's national colloquium on Transitions from HIV to AIDS in late 1992 provided confirmation that social research was urgently required to address this problematic area5. The Centre also established a ten person Steering Committee (now Research Advisory Committee) comprised of PLWH/A, researchers and carers for its Living With HIV/AIDS Research Program. Whilst not the only mechanism for establishing ongoing dialogue with affected communities, it was a vital link for ascertaining the cultural relevance and appropriateness of issues as they arose. In a genuinely collaborative working atmosphere, community-based Committee members consistently initiated and reviewed research topics central to their various constituencies. For instance, members' work locations included a specialist HIV medical clinic, an HIV/AIDS counselling service, an AIDS Council (the major community-based HIV/AIDS organisations in Australia), and an HIV/AIDS ward at a major metropolitan hospital. Most importantly, all members were actively encouraged to suggest research topics and constantly update the Centre's research agenda. Meeting every 6-8 weeks, this national Committee rapidly emerged as pivotal to the effectiveness of the PLWH/A research program.
The Research Team and Previous Research The National Centre was also determined to recruit a research team with a high degree of "cultural credibility". Undertaking a series of research projects requiring in-depth qualitative interviewing and community consultation made it absolutely critical that researchers were not only seen to have an adequate grasp of contemporary issues but also had an acute sensitivity about the delicate nature of many of the subjects under discussion. The fact that two of the research team were themselves openly HIV positive and had lengthy experience of working in the community-based sector certainly enhanced the credibility of these communication channels. The other two active researchers had considerable experience in working in community-based settings and were committed to the strength of indigenous research. Indeed, the Centre's (now ex-) Director and project supervisor, Professor Beverley Raphael, had a well-established reputation for instigating ongoing and authentic communication channels in the field of mental health. The first of the Centre's projects addressed the significance of personal relationships in the lives of PLWH/A and it was apparent even amongst the small sample of fifteen HIV+ gay men that major differences existed between those who had and those who had not experienced AIDS-related illnesses (see Cannold 1995). It was through this project that the Transitions project emerged. The Steering Committee endorsed the importance of investigating the critical processes involved in the transition from living with HIV to dying with AIDS after acknowledging the growing body of anecdotal and some research evidence that significant differences existed between those at the early stages of living with HIV and those experiencing AIDS-defining illnesses. Here there was some understandable resistance to investigating death and dying from community agencies who work hard to provide and retain a sense of hope in a generally gloomy climate. Nevertheless, these organisations were also struggling to facilitate an increasingly complex caring and support role necessary to accommodate the growing uncertainties associated with the HIV to AIDS transition. The Personal Relationships and HIV study conducted during 1992 was already identifying the apparent distinctions between two remarkably different diagnoses: HIV and AIDS. Obviously, making a division between diagnoses is more characteristic of an epidemic in the industrialised West where education and prevention services are such that it is usually possible to detect HIV very early in the course of the disease. The concept of a "dual diagnosis" is one that few Western PLWH/A infected after the initial onslaught of the epidemic have experienced. Nonetheless, it is interesting to note the major differences found by the Transitions Study between those with lengthy versus those with relatively brief time spans from an HIV to an AIDS diagnosis. To some extent, this adjustment is affected by the prospect of increased survival time through enhanced drug treatments which has considerably altered the culture surrounding both an HIV and AIDS diagnosis in recent years.
Research Questions and Literature Background An individual's transition from living with HIV to being defined as living with (or dying from) AIDS is central to our understanding of both 1) the ways in which the disease manifests, and 2) the ways in which an epidemic is shaped by and shapes common understanding of illness. There is a considerable amount of literature concerning the psychosocial reactions of people who are diagnosed with HIV, less concerning people diagnosed with AIDS, and much theoretical material which influences our understanding of social processes that effect the experience of AIDS-related illness. Guiding this research is a belief that diagnosis with AIDS can be as crucial and definitive an event as diagnosis with HIV, significant in the way it acts as a catalyst for major changes in health and social status. It was the intention of this project to study the processes of change that occur for individuals with AIDS, from AIDS diagnosis (either by self or medically) through to death. These processes were seen to be flowing through three key stages: 1. living well with asymptomatic HIV 2. living with AIDS-related conditions 3. dying from AIDS-related illnesses
Key research questions therefore included:
Literature drawn on to influence this study included findings from the fields of psychology, psychiatry, sociology, medical anthropology, and from the written accounts of workers in the field and people with AIDS themselves. We know that the experience of illness has profound effects on an individual's personal and social identity (Charmaz 1983, Bury 1982). We also know that HIV/AIDS is a stigmatised disease, and carries significant negative social meanings, as a 'disease of difference' (Alcorn 1988, Ariss 1992). It was anticipated that the Transitions project would study the feelings associated with experiencing AIDS-related illness in the context of their effects on identity, and the effects of social definitions of a stigmatised illness on individual identity construction and social location. Related work highlights the existence of psychological and emotional states that contribute to, and indeed often shape the experience of AIDS-related illness (see Schaefer 1989, Pakenham et al 1996). These factors include death anxiety (Catania et al 1992, Hayslip et al 1991/2), anxiety and depression (Perdices et al 1992), uncertainty (Brown & Powell-Cope 1991, Weitz 1989), and loss (Nokes 1991). Contributing to these experiences are a number of other social factors including multiple loss (Viney et al 1992), changes in personal and social relationships (Atkins & Amenta 1991, Hart et al 1990, Cates et al 1990), unmet expectations of medical science (Mishel 1990), the effect of lay or community definitions of AIDS-related illness (Friedson 1970 discusses this phenomena in relation to illness generally), reduced economic circumstances (Crystal and Jackson 1989), the effects of drug treatments and the experience of pain and hospitalisation. Research investigating the effects of AIDS-related illness, certainly in an Australian context, have drawn little on the work on multiple loss (for a notable exception, see Viney et al 1992). It was thought that attempts to tackle this area might sharpen the focus on the effect of illness on relationships, financial circumstances and emotional and psychological states to include the particular social conditions that exist in Australia. Strategies for coping with these changes in health and social status are identified in an American (Sandstrom 1990, Nokes 1991, McCain and Gramling 1992) and British (Davies 1997) context. The themes of adaption and adjustment in relation to illness generally, or other specific illnesses contribute to our understanding of coping styles (Craig and Edwards 1983, Andrykowski et al 1993) and influences the design of the research to focus on process or transition as frameworks for investigation, recognising the dynamic nature of the experience of illness. Preparations for death, as indicators of facing death, feature in the research, influenced by Allan Kellehear's theory of the 'Good Death' in relation to terminal cancer patients (Kellehear 1992) and by Glaser and Strauss' study of the function of time in the experience of terminal illness (1968). In addition, studying participants' feelings about dying in hospital versus dying at home should point to perceptions about medical control of death, plus participants' access to resources to make those decisions possible. It is interesting to note that we have found little research that looks specifically at either the personal or social meanings of the experience of dying of AIDS (exceptions include Moynihan et al 1988, Teguis 1992, and Nott 1994). The personal and social meanings of preparing for death, both in a practical sense, in terms of interpersonal relationships and in the context of an individual making meaning of their life, requires investigation in the context of the broad range of influences outlined above. Much work exists that contributes to aspects of our understanding of AIDS-related terminal illness. Further investigation is required to draw together specific studies and place these experiences, both personal and social, in an Australian context.
Methodology The Transitions research data was drawn from a series of interviews with people who have AIDS and in so doing, attempted to capture a cross-section reflecting Australia's current HIV/AIDS epidemiological profile. This study also aimed for a broad coverage of people with HIV/AIDS, especially in terms of age, class and length of AIDS diagnosis. Seeking over 60 interviews, we finally interviewed 38 PLWAs, excluding five pilot interviews and two pilot focus group discussions with specialist AIDS General Practitioners and carers. The interviews lasted for one and a half hours on average and were transcribed verbatim and analysed using content analysis involving different levels of interpretation. Borrowing from the Women, Risk and AIDS Project's methodological framework (Ramazanoglu, 1992, p.22), we had to interpret the material on at least three levels:
All transcribed interviews used a coded label as an identifier and pseudonyms to ensure participants remained anonymous. All names and other identifying details in the transcript were also generalised eg. I'm friends with John Smith became I'm friends with [name of friend]. The interview followed a semi-structured format insofar as the questions and topics covered remained consistent across interviews, but sufficient scope was allowed for individuals to determine the actual order in which specific questions were addressed. This allowed us to continually refine the theoretical aspects of our work in the light of the data in the interviews. Sociological and medical anthropological frameworks were applied to transcripts including, in particular, social constructivism, illness as a trajectory and good death theory to inform the qualitative analysis. However, there was a pervasive sense that AIDS presented a "unique" character, especially regarding illness and death, and resisted explanation via one overriding theory.
Ethical Considerations The focus of research on HIV/AIDS in the natural and well as the social sciences has sharpened in the last few years. Strong arguments can be made for the usefulness of most the research taking place. However one of the drawbacks has been the pressure from researchers on the small pool of people with HIV/AIDS who are able and willing to take part in research projects. "Over-research" has two obvious effects, firstly the burden on those who are the subjects of the research and secondly the fact that you are talking to the same people all the time and missing people with a different point of view or experience. The immediate methodological dilemma presented by the Transitions study was a broad one involving the ethics of researching ill people. Furthermore, the complex physical manifestations of the disease also posed a research problem. For example, we were not going to be able to slant the sample to interview just people with PCP or Karposi's Sarcoma. Regardless of the defined diagnosis and accompanying label, there would always be a variety of different illness and physical states. Therefore when we talk about illness we need to clear about the definition we are using. An AIDS diagnosis is the entry point for the research. Beyond this though is the need for an explanation of the relationship between illness and AIDS. The latter issue is obviously a bit of a conundrum. As researchers we can only talk to those who are willing to talk to us, and despite strenuous, and sometimes ingenious efforts to access the broadest group of people with HIV/AIDS, we are limited by those who are willing to participate. This is not to argue that research that accesses this group is less valuable, or in some way tired. But the problem of getting to those, who for whatever reason remain on the outside, does mean that we can only hypothesise about their experiences and lives. Nevertheless, the project was effective in reaching a diversity of the PLWA population. Using a combined snowballing and direct recruitment strategy, it was possible to talk with PLWA varying significantly across age, demography, class, involvement with HIV/AIDS and/or gay organisations, length of illness, year of diagnosis and even ethnicity and gender (see Table 1). The success in accessing participants for the research was undoubtedly enhanced by the aforementioned Transitions colloquium whose attendance included key HIV/AIDS service providers and prominent PLWH/A. As many feminist AIDS social researchers have highlighted (see Thomson & Scott 1990), in the context of the AIDS crisis, there is substantial pressure to provide instances and explanations of behaviour which can be used to answer short-term policy driven questions. Given this need for empirical knowledge, the interviews did ask some basic demographic questions able to be quantified before proceeding to a series of open-ended, life-history oriented questions. The research team acknowledged from the outset the complex nature of the issues canvassed in the course of the interview, issues which cannot be simply accumulated as a series of facts and "number crunched" to determine policy outcomes. By treating the data as problematic and open to different readings, we were also able to postulate a layered set of possible meanings as opposed to a single, explanatory "grand narrative". Finally, the broad scope of the interviews entailed a high degree of risk in that it gave rise to a plethora of sensitive, delicate topics. In particular, the discussion around pain and approaching death necessitated an acute awareness on the part of the interviewer and in many cases involved contacting the interviewee on the following day. However, for many, the gamut of issues addressed and the manner in which they were approached evoked a somewhat therapeutic experience. All participants were asked "How have you found doing this interview?" and Brian responded:
Aims of the Research The research team and Steering Committee put forward a range of goals for this study but they can be summarised by the following:
The research interviews themselves sought to address four (4) separate hypotheses:
Endnotes 5. See National Centre for HIV Social Research (1993) Report on the Life Threatening Aspects and Terminal Phases Colloquium: Sydney, November 1992, Brisbane: University of Queensland.
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