Chronic Viral Illness Service, Division of Infectious Diseases, McGill University Health Centre (MUHC), Montreal, Canada.
Canadian Institutes of Health Research Strategy for Patient-Oriented Research Mentorship Chair in Innovative Clinical Trials, Montreal, Canada.
Curr HIV Res. 2023;21(4):264-267. doi: 10.2174/1570162X21666230904150923.
Finding a cure for HIV is challenged by persisting reservoirs, the mapping of which necessitates invasive procedures. Inviting people with HIV (PWHIV) at the end of life to donate body specimens post-mortem through research autopsies is a novel approach, raising ethical concerns.
This case study aims to explore the motivations, barriers, and facilitators of a terminally-ill Canadian PWHIV who requested medical assistance in dying (MAID) and expressed interest in donating his body for HIV cure research.
An in-depth 3-hour and semi-structured interview was conducted with the participant. The interview transcription was thematically coded to identify motivations and perceived barriers and facilitators to participate in end-of-life HIV cure research. Our analysis identified six themes. Two themes expressed motivations: Collaboration in progress in health and science, seeing cure research as collaboration with professionals; and Opportunity to learn more, mostly about science and health. One theme expressed a barrier: Losing interest in or identification with long-term care research matters, especially those related to the management of long-term care. Three themes expressed by facilitators: Receiving information from professionals one trusts and knows, especially clinical and research teams; Perceiving research procedures as simple, useful, and embedded in care, perceiving clinical, educational, and interpersonal benefits that surpass costs of participation; and Perceiving research as one last way to contribute, that is, feeling useful or give back.
Several circumstances facilitated the patient's participation: being a single man, having time to participate, having no strong religious belief, and valuing clear, direct communication. His motivations to participate in HIV cure research were altruistic, and also an experience of working with clinical and research teams. Finally, this perspective highlights HIV cure research participant candidates' need for education about research procedures.
寻找治愈 HIV 的方法受到持续存在的病毒库的挑战，而对这些病毒库的定位需要进行侵入性操作。邀请生命末期的 HIV 感染者（PWHIV）通过研究尸检在死后捐献身体标本是一种新方法，引起了伦理问题。
本案例研究旨在探讨一位加拿大终末期 HIV 感染者的动机、障碍和促进因素，该感染者请求安乐死（MAID）并表示有兴趣将自己的身体捐献给 HIV 治愈研究。
对参与者进行了长达 3 小时的深入半结构式访谈。对访谈记录进行主题编码，以确定参与终末期 HIV 治愈研究的动机以及感知到的障碍和促进因素。我们的分析确定了六个主题。两个主题表达了动机：在健康和科学方面的合作进展，将治愈研究视为与专业人员的合作；以及有机会了解更多信息，主要是关于科学和健康。一个主题表达了一个障碍：对长期护理研究的兴趣或认同丧失，尤其是那些与长期护理管理相关的研究。三个主题表达了促进因素：从信任和了解的专业人员那里获得信息，特别是临床和研究团队；将研究程序视为简单、有用且嵌入护理中的程序，认为临床、教育和人际效益超过参与成本；以及将研究视为最后一次贡献的方式，即感到有用或回馈。
几个情况促进了患者的参与：单身男性，有时间参与，没有强烈的宗教信仰，以及重视清晰、直接的沟通。他参与 HIV 治愈研究的动机是利他的，也是与临床和研究团队合作的一种体验。最后，这种观点强调了 HIV 治愈研究参与者需要了解研究程序。
