HIV cure research requires interrogating latent HIV reservoirs in deep tissues, which necessitates autopsies to avoid risks to participants. An HIV autopsy biobank would facilitate this research, but such research raises ethical issues and requires participant engagement. This study explores the willingness to participate in HIV cure research at the end of life. Participants include Canadians with HIV [people with HIV (PWHIV)] aged 55 years or older. Following a mixed-method study design, all participants completed a phone or online survey, and a subset of participants participated in in-depth phone or videoconference interviews. We produced descriptive statistics of quantitative data and a thematic analysis of qualitative data. Barriers and facilitators were categorized under domains of the Theoretical Domains Framework. From April 2020 to August 2021, 37 participants completed the survey (mean age = 69.9 years old; mean duration of HIV infection = 28.5 years), including 15 interviewed participants. About three quarters of participants indicated being willing to participate in hypothetical medical studies toward the end of life (n = 30; 81.1%), in HIV biobanking (n = 30; 81.1%), and in a research autopsy (n = 28; 75.7%) to advance HIV cure research, mainly for altruistic benefits. The main perceived risks had to do with physical pain and confidentiality. Barriers and facilitators were distributed across five domains: social/professional role and identity, environmental context and resources, social influences, beliefs about consequences, and capabilities. Participants wanted more information about study objectives and procedures, possible accommodations with their last will, and rationale for studies or financial interests funding studies. Our results indicate that older PWHIV would be willing to participate in HIV cure research toward the end of life, HIV biobanking, and research autopsy. However, a dialogue should be initiated to inform participants thoroughly about HIV cure studies, address concerns, and accommodate their needs and preferences. Additional work is required, likely through increased community engagement, to address educational needs.

中文翻译：

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加拿大老年艾滋病毒感染者在生命即将结束和生命结束后参与艾滋病毒治疗研究的意愿：一项混合方法研究

艾滋病毒治疗研究需要探查深层组织中潜在的艾滋病毒储存库，这需要进行尸检以避免参与者面临风险。艾滋病毒尸检生物库将促进这项研究，但此类研究会引发伦理问题并需要参与者参与。本研究探讨了临终时参与艾滋病毒治疗研究的意愿。参与者包括年龄 55 岁或以上的加拿大艾滋病毒感染者 [艾滋病毒感染者 (PWHIV)]。按照混合方法研究设计，所有参与者都完成了电话或在线调查，一部分参与者参加了深入的电话或视频会议访谈。我们对定量数据进行了描述性统计，并对定性数据进行了主题分析。障碍和促进因素被分类在理论领域框架的领域内。2020年4月至2021年8月，共有37名参与者完成了调查（平均年龄=69.9岁；平均HIV感染持续时间=28.5年），其中包括15名受访参与者。大约四分之三的参与者表示愿意在临终时参与假设的医学研究（n  = 30；81.1%）、艾滋病毒生物库（n  = 30；81.1%）和研究性尸检（n  = 28；81.1%）。 75.7%）推进艾滋病治疗研究，主要是为了利他利益。主要的感知风险与身体疼痛和保密有关。障碍和促进因素分布在五个领域：社会/专业角色和身份、环境背景和资源、社会影响、对后果的信念和能力。参与者希望获得有关研究目标和程序、可能的最后意愿调整以及研究或经济利益资助研究的理由的更多信息。我们的结果表明，老年艾滋病毒感染者愿意参与临终时的艾滋病毒治疗研究、艾滋病毒生物库和研究尸检。然而，应该启动对话，让参与者全面了解艾滋病毒治疗研究、解决问题并满足他们的需求和偏好。需要开展更多工作，可能通过增加社区参与来满足教育需求。