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“公开露面”与“观察病人”——临床环境作为男同性恋者参与艾滋病临床试验经历中的一个因素

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

作者信息

Ryan L

机构信息

Department of Sociology, University of Kent, Canterbury, UK.

出版信息

AIDS Care. 1995;7(2):147-58. doi: 10.1080/09540129550126678.

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.

摘要

本文报告了一项研究的结果,该研究旨在调查澳大利亚感染艾滋病毒的男同性恋者参与抗艾滋病毒临床试验的经历。通过对一项一期临床试验的参与观察以及对一系列临床试验的参与者和试验护士进行深入访谈,获取了相关数据,这些数据表明临床环境在构建试验参与者的经历方面具有核心作用。临床场所的重要性在信息控制问题上尤为明显,特别是对于无症状的试验参与者而言,还体现在与未来患病自我的对抗上。出现的另一个关键问题涉及澳大利亚艾滋病毒流行的流行病学特征,其中男同性恋者的占比过高;鉴于同性恋与艾滋病毒在文化上的共同归类,艾滋病毒试验场所是一个具有性意味的空间,出现在那里通常被认为意味着这个人是同性恋者。这些发现对参与抗艾滋病毒临床试验的人数、依从率以及医疗保健干预计划具有影响,特别是那些旨在监测和支持参与艾滋病临床试验者的计划。这些发现对于接受实验性抗艾滋病毒疗法的感染艾滋病毒的男同性恋者的更广泛生活质量问题也具有广泛的相关性。

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