通过加拿大临终医疗救助为艾滋病治疗研究捐献遗体:案例研究。

IF 0.8 4区 医学 Q4 IMMUNOLOGY
David Lessard, Bertrand Lebouché, André Morneau, Martin Bilodeau, Ron Rosenes, Justin Sanders, Nicolas Chomont, Patrick Keeler, Karine Dubé, Shari Margolese, Mohammad Ali Jenabian, Christopher Power, Jean-Pierre Routy, Jonathan B Angel, Éric A Cohen, Cecilia T Costiniuk
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引用次数: 0

摘要

背景:寻找治愈艾滋病毒的方法面临着持续存在的贮存库的挑战,而绘制贮存库的地图需要进行侵入性程序。邀请生命末期的艾滋病病毒感染者(PWHIV)在死后通过研究性尸检捐献遗体标本是一种新方法,引起了伦理方面的关注:本案例研究旨在探讨一名身患绝症的加拿大艾滋病病毒感染者(PWHIV)申请临终医疗救助(MAID)并表示有兴趣捐献遗体用于艾滋病治愈研究的动机、障碍和促进因素:对参与者进行了长达 3 小时的半结构化深入访谈。对访谈记录进行了主题编码,以确定参与生命末期艾滋病治愈研究的动机、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:在健康和科学进步中合作,将治愈研究视为与专业人士的合作;有机会学习更多知识,主要是关于科学和健康的知识。一个主题表达了障碍:对长期护理研究失去兴趣或认同感,尤其是与长期护理管理相关的研究。促进者表达了三个主题:从自己信任和了解的专业人士,尤其是临床和研究团队那里获得信息;认为研究程序简单、有用,并已融入护理工作中,认为临床、教育和人际交往方面的益处超过了参与的成本;认为研究是做出贡献的最后一种方式,即感觉自己有用或有所回报:有几种情况促进了该患者的参与:单身、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。他参与艾滋病治愈研究的动机是利他的,同时也是与临床和研究团队合作的一种体验。最后,这一观点强调了艾滋病治愈研究参与者候选人需要接受有关研究程序的教育。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Donating One's Body to HIV Cure Research Through Canadian Medical Assistance in Dying: A Case Study.

Background: 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.

Objective: 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.

Case presentation: 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.

Conclusion: 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.

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来源期刊
Current HIV Research
Current HIV Research 医学-病毒学
CiteScore
1.90
自引率
10.00%
发文量
81
审稿时长
6-12 weeks
期刊介绍: Current HIV Research covers all the latest and outstanding developments of HIV research by publishing original research, review articles and guest edited thematic issues. The novel pioneering work in the basic and clinical fields on all areas of HIV research covers: virus replication and gene expression, HIV assembly, virus-cell interaction, viral pathogenesis, epidemiology and transmission, anti-retroviral therapy and adherence, drug discovery, the latest developments in HIV/AIDS vaccines and animal models, mechanisms and interactions with AIDS related diseases, social and public health issues related to HIV disease, and prevention of viral infection. Periodically, the journal invites guest editors to devote an issue on a particular area of HIV research of great interest that increases our understanding of the virus and its complex interaction with the host.
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