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“这就是我回报的方式”:美国临终时关于遗产及艾滋病毒治愈研究的长期幸存者——一项定性调查

"This Is How I Give Back": Long-Term Survivors on Legacy and HIV Cure Research at the End of Life-A Qualitative Inquiry in the United States.

作者信息

Ahmed Ali, Taylor Jeff, Tran Whitney, Swaitch Simran, Ndukwe Samuel O, Lau Rachel, Oliveira Kris H, Solso Stephanie, Dullano Cheryl, Kaytes Andy, Riggs Patricia K, Deiss Robert, Gianella Sara, Dubé Karine

机构信息

Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD), 9500 Gilman Drive, La Jolla, CA 92093, USA.

HIV+ Aging Research Project-Palm Springs, Palm Springs, CA 92264, USA.

出版信息

Infect Dis Rep. 2025 Jul 4;17(4):78. doi: 10.3390/idr17040078.

Abstract

: End-of-life (EOL) HIV cure research, which studies HIV persistence through pre- and post-mortem tissue collection, has focused primarily on people living with HIV (PLWH) with a prognosis of six months or less. However, the perspectives of long-term survivors (LTS) diagnosed before the advent of effective antiretroviral treatment (ART) remain underexplored. Understanding their motivations and concerns about EOL cure research is essential for creating inclusive and ethical research frameworks. : Between 2023 and 2024, we conducted in-depth qualitative interviews with 16 PLWH aged 60 and older from diverse backgrounds across the United States, recruited through community-based organizations and HIV networks. We used inductive thematic analysis to explore LTS' perspectives on EOL HIV research. : Participants included cisgender men (56.25%) and women (43.75%) with diverse racial identities. While participants supported EOL HIV cure research, their willingness to participate varied, influenced by awareness, logistics, and ethical concerns. Altruism-motivated participation, but misconceptions about procedures and concerns over bodily integrity represented potential barriers. Some viewed blood draws and leukaphereses as routine, while others expressed hesitancy with biopsies and post-mortem tissue retrieval. HIV stigma, historical mistrust, and cultural beliefs also played a role in willingness to participate. LTS emphasized the need for decentralized research sites, travel support, and financial safeguards. : To include LTS in EOL HIV cure research, a community-driven approach is needed, focusing on clear communication, ethical considerations, logistical support, and linkages to EOL care. Addressing misconceptions and building trust, particularly within groups traditionally underrepresented in research, is essential to expanding participation.

摘要

临终(EOL)艾滋病毒治愈研究通过生前和死后组织采集来研究艾滋病毒的持续性,主要集中在预后为六个月或更短时间的艾滋病毒感染者(PLWH)身上。然而,在有效抗逆转录病毒治疗(ART)出现之前被诊断出的长期幸存者(LTS)的观点仍未得到充分探索。了解他们对临终治愈研究的动机和担忧对于创建包容性和符合伦理的研究框架至关重要。

2023年至2024年期间,我们对来自美国各地不同背景的16名60岁及以上的艾滋病毒感染者进行了深入的定性访谈,这些参与者是通过社区组织和艾滋病毒网络招募的。我们使用归纳主题分析法来探索长期幸存者对临终艾滋病毒研究的观点。

参与者包括具有不同种族身份的顺性别男性(56.25%)和女性(43.75%)。虽然参与者支持临终艾滋病毒治愈研究,但他们参与的意愿各不相同,受到认知、后勤和伦理问题的影响。出于利他主义的参与,但对程序的误解和对身体完整性的担忧构成了潜在障碍。一些人认为抽血和白细胞分离术是常规操作,而另一些人对活检和死后组织采集表示犹豫。艾滋病毒污名、历史上的不信任和文化信仰也在参与意愿中起到了作用。长期幸存者强调需要分散研究地点、提供旅行支持和财务保障。

为了将长期幸存者纳入临终艾滋病毒治愈研究,需要一种社区驱动的方法,重点是清晰的沟通、伦理考量、后勤支持以及与临终护理的联系。消除误解并建立信任,特别是在研究中传统上代表性不足的群体中,对于扩大参与至关重要。

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