'Going public' and 'watching sick people'-the clinic setting as a factor in the experiences of gay men participating in AIDS clinical trials

Abstract

This paper reports findings from a study which was concerned to investigate the experiences of gay men living with HIV disease on anti-HIV clinical drug trials in Australia. Participation observation of a Phase 1 clinical trial and in-depth interviews with both trial participants on a range of clinical trials and trial nurses provided data which point to the centrality of the clinic setting in structuring the experiences of trial participants. The importance of the clinic site is particularly evident in respect of issues of information control and, particularly for asymptomatic trial participants, confrontation with future ill selves. A further key issue which emerged relates to the epidemiological profile of the HIV epidemic in Australia in which gay men are disproportionately represented; the HIV trial site is a sexualized space, presence there is commonly assumed to mean that the individual is gay, given the cultural co-categorization of homosexuality and HIV. These findings have implications for accrual to anti-HIV clinical trials, for compliance rates and for health care intervention programmes, in particular those which are concerned to monitor and support those participating in AIDS clinical trials. The findings are also of broad relevance to the wider issue of quality of life of gay men with HIV disease taking experimental anti-HIV therapies.