What is materially achieved for positive people by being engaged in research? This question, posed by Peter Canavan at the NAPWA Conference in October, set the tone for a number of sessions focusing on HIV research.
Integrating clinical and social research that focuses on the quality of life of HIV-positive people is an important step. Research should begin from the acknowledgement that it is positive people who know what it feels like to be living with all the various and sometimes complicated dimensions of HIV/AIDS. Good research adds to the understanding of the way illness, treatment or side effects work in real people’s lives.
The best research incorporates representation from positive people at the outset, influencing all aspects of the research. If this is to happen, positive people need many friends and alliances, and need to be skilful in developing collaborative relationships with the researchers and institutions managing clinical and social research.
Peter Canavan said the Cairns conference provided “an opportunity to look at the places where our partnerships have sometimes been wanting, or even fallen short: things like ensuring that research results are effectively communicated back to affected communities (which has happened, historically, patchily or sometimes not at all) or ensuring that positive people are given the space to set agendas as well as respond to them.”
There were echoes of the presentation by Jon Willis at the previous conference, in Melbourne in 2001. Jon called for a movement in research which would be driven by various positive agendas and raise and answer questions about the diversity of positive experience. Positive people, he said, are “more than the sum of our numbers, more than a set of clinical markers, a conflation of risk practices, or a set of disease statistics.”
In a sense, I felt that this year’s conference started to fill out the vision suggested by Jon Willis two years ago.
Others contributed to the discussion. In Cairns, Dr John Kaldor, the deputy director of the National Centre in HIV Epidemiology and Clinical Research, talked about the healthy research relationships that have been developed over the years, relationships unique to Australia and to HIV research.
He described the shift from the confrontational nature of some early relationships to today’s situation, where the emphasis is on developing and making the structural arrangements work, and achieving better research outcomes.
Dr Kaldor also noted that there are only a small group of community advocates who are confident or able to participate in clinical research policy. He said that he values the NAPWA representative roles on the National Centre’s working groups and especially the role these community representatives play in returning information to the community.
Heather Worth and Michael Hurley spoke about social research and explored how the involvement of HIV community advocates in research processes had led to better outcomes and directly affected the ways in which research is thought about and conducted in Australia. Heather mentioned some of the difficulties of research being located within non-government organisations, but also suggested that this had the advantage of bringing researchers closer to the epidemic and developing community participation in research.
Michael Hurley’s image of a ‘dance’ to describe the way that research agendas have developed showed how HIV researchers and the researched move in the same circles, and where their connection informs research directions.
Within this ‘meaning making,’ Michael suggested, an area of interest is to ask how “illness is creatively positioned in life.” This resonated strongly with the conference theme, the art of living, which was set up to explore how a meaningful and full life can be lived in the presence of HIV/AIDS. Michael also pointed out that there may be times when research is pointing in directions that positive people might not want to go.
Pictures of our lives
This year there have been at least three reports which added to this picture of living a positive life. Cultures of Care and Safe Sex Amongst HIV Positive Australians, edited by Michael Hurley; the preliminary report from the VINES study [[“PDF file”:http://www.latrobe.edu.au/ARCSHS website.”>arcshs/downloads/Reports/Vines.pdf]], by Jeffrey Grierson and others; and, from the National Centre in HIV Social Research, Positive Health: Then and Now — Following HIV-Positive People’s Lives Over Time [[“PDF file”:http://NCHSR website.
“>nchsr.arts.unsw.edu.au/pdf%20reports/PositiveHealth.pdf]].
(All these reports are available online, the first two at www.latrobe.edu/arcshs and the third at nchsr.arts.unsw.edu.au).
What are these reports telling us?
Cultures of Care brings together a series of papers prepared by different researchers from material contained in HIV Futures I and II surveys and interviews, focusing on positive people as active agents in caring for themselves and others. These ‘cultures of care’ play a significant role in HIV prevention efforts, the report says. The care practices and strategies described in the report range from the uptake of antiretroviral therapies through to highly sexually responsible practices in serodiscordant relationships and casual sexual encounters.
This sensitive rendering of the sexual lives and practices of people living with HIV/AIDS in Australia reveals that people living with HIV maintain a major commitment to safe sex and the concept of mutual responsibility. The introduction to the report rules out the notion of ‘complacency’ amongst gay men as an appropriate explanation for unprotected sex and suggests that notions of self-care and care of others could be usefully employed in HIV prevention policy and practice.
Michael Hurley describes the development of the concept of ‘cultures of care’ as coming out of whole lot of formal and informal collaborations. Those collaborations have delivered a very useful and powerful concept to work with.
The VINES study focuses firstly on the social, sexual and informational networks of homosexually active men in Melbourne. It has generated a lot of interest because of its method — the way the research is being conducted. Rather than getting distracted by a search for the meaning of ‘community’ or asking how effective ‘communities’ are as a target for interventions or for generating interventions, the study begins with the obvious notion that individuals are part of a broad range of social networks.
Asking questions about a person’s locations and activities within these networks moves beyond treating the men in the study as one-dimensional actors. This is what has generated so much interest in the method.
If, in order to improve HIV prevention efforts, policy-makers want to understand how these social, sexual and informational networks function and respond accordingly, they would have to conclude that their responses, like the networks themselves, have to be more than one-dimensional.
There’s nothing particularly Earth-shattering about that idea, but by adopting this method some important new pieces of information have emerged. For example, one of the study’s findings is that unprotected anal intercourse with a person of different or unknown HIV status is most likely to take place within the home of one of the two partners. This ought to result in a change in attention from what sometimes seems like an overly obsessive focus on sex on premises venues.
More of this network analysis will be coming from ARCSHS and it might be a helpful way to consider how further action oriented research interventions might be structured.
Positive Health: Then and Now traces the lives of 307 HIV-positive people drawn predominantly from inner Sydney, northern NSW and Melbourne. Participants were asked a similar set of questions in 1998/99 and again in 2000/01. This has allowed the researchers to identify trends and draw some comparisons over time.
The data still needs to be examined for its implications in terms of development of policy and service provision, but some of the broad observations that can be made include the fact that the majority of people in the study continue to read the HIV community press, they see their doctor less frequently than in the past, they are likely to experience access difficulties at hospital pharmacies and, in about 60 percent of cases, they have an annual income of $26,000 or less.
The report was launched at the NAPWA conference and the researchers plan to run a series of feedback sessions on the report in Melbourne, Sydney and possibly the Northern Rivers. What the Positive Health study has given us over the last few years is an in-depth picture of the lives of a particular group of positive people; funding for the study is assured up to 2005 in NSW and to 2004 in Victoria.
To return to the theme of ‘becoming more than the sum of our numbers’, it appears that we’re being successful in generating research that paints a picture of the lives of positive people in diverse settings. We do seem to be moving from being represented through numbers towards being represented in many dimensions, but the question raised by Peter Canavan about what can materially be achieved, through the generation of all this research, could still do with some focus.
*John Rule* is NAPWA’s HIV Living Policy Officer.
