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被忽视的声音:让感染艾滋病毒的女性切实参与艾滋病毒临床和治愈研究

Missing voices: building women living with HIV's meaningful engagement in HIV clinical and cure research.

作者信息

Chong Susan C S, Lim Gene, Machon Kirsty, Mugwagwa Heather, Johnson Jennifer, Le Gautier Roslyn, Power Jennifer

机构信息

Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Australia.

Department of Public Health, School of Psychology and Public Health, La Trobe University, Melbourne, Australia.

出版信息

Cult Health Sex. 2024 Sep 27:1-17. doi: 10.1080/13691058.2024.2408353.

Abstract

Women living with HIV are consistently under-represented in HIV clinical trials, including cure trials. Little is known about how cisgender women living with HIV in Australia perceive HIV cure research, their level of trust in research institutions/staff, and factors salient to participation in HIV cure trials. Semi-structured interviews were conducted with women living with HIV and clinicians working with women living with HIV to investigate motivations and barriers to gender-equitable representation in HIV clinical research. Participant motivations for participation included altruistic desires to benefit younger women, and to optimise resulting interventions. Women living with HIV expressed optimism that a cure would dispel HIV-related stigma and brings about substantial material improvement to their lives. Reluctance to participate related to concerns regarding potential side-effects, antiretroviral treatment interruption, and impacts on fertility. Unfamiliarity with trials, confidentiality concerns and logistical difficulties were also cited. Lastly, onerous eligibility criteria, clinicians' assumptions about women's willingness and ability to meaningfully provide consent to participation were cited as barriers which could be addressed. Bolstering women's participation in HIV cure research requires consideration of factors relating to reproductive health, analytical treatment interruption, and recruitment. Engaging women living with HIV in trial design and promotion may help overcome these issues.

摘要

感染艾滋病毒的女性在包括治愈试验在内的艾滋病毒临床试验中的代表性一直不足。对于澳大利亚感染艾滋病毒的顺性别女性如何看待艾滋病毒治愈研究、她们对研究机构/工作人员的信任程度以及参与艾滋病毒治愈试验的突出因素,人们知之甚少。我们对感染艾滋病毒的女性以及为感染艾滋病毒的女性提供治疗的临床医生进行了半结构化访谈,以调查艾滋病毒临床研究中性别平等代表性的动机和障碍。参与者参与的动机包括利他主义愿望,即造福年轻女性并优化最终的干预措施。感染艾滋病毒的女性表示乐观地认为,治愈将消除与艾滋病毒相关的耻辱感,并给她们的生活带来实质性的物质改善。不愿参与与对潜在副作用、抗逆转录病毒治疗中断以及对生育的影响的担忧有关。对试验不熟悉、保密问题和后勤困难也被提及。最后,繁琐的资格标准、临床医生对女性有意义地提供参与同意的意愿和能力的假设被认为是可以解决的障碍。加强女性参与艾滋病毒治愈研究需要考虑与生殖健康、分析性治疗中断和招募相关的因素。让感染艾滋病毒的女性参与试验设计和推广可能有助于克服这些问题。

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