A growing number of people living with HIV/AIDS are participating in HIV cure-related research at the end of life (EOL). Due to the novelty of EOL HIV cure-related research, there is a need to understand how their next-of-kin (NOK) perceive such research. We conducted in-depth interviews with NOK of the Last Gift study participants at the University of California, San Diego. The Last Gift study occurs in the context of the EOL and involves a full body donation. NOK completed two interviews: (1) shortly after the participants' enrollment in the study and (2) following death. We applied thematic analysis to analyze qualitative data. NOK included seven individuals (five males and two females), including two spouses, one ex-partner, one sister, a grandmother/grandfather, and a close friend. Thematic analysis revealed five key themes: (1) NOK viewed the Last Gift program in a positive light and had an accurate overall understanding of the study; (2) NOK identified factors that motivated participants to donate their body to science; (3) NOK identified benefits of the Last Gift program for both the donors and themselves; (4) NOK did not perceive any physical risks or decisional regrets of study but wanted to minimize psychosocial impacts and ensure the dignity of participants at all times; and (5) NOK noted elements that remained essential to the successful implementation of EOL HIV cure-related research, such as early involvement and clear communication. Our study uniquely contributes to increased understanding and knowledge of what is important from the point of view of supportive NOK to ensure successful implementation of EOL HIV cure-related research. More research will be needed to understand perspectives of less supportive NOK.

中文翻译：

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近亲/亲人对最后一份礼物的看法快速研究尸检研究招募了临终艾滋病毒/艾滋病患者：一项定性访谈研究。


越来越多的艾滋病毒/艾滋病感染者正在参与生命末期 (EOL) 的艾滋病毒治疗相关研究。由于 EOL HIV 治疗相关研究的新颖性，有必要了解他们的近亲 (NOK) 如何看待此类研究。我们对加州大学圣地亚哥分校的“最后的礼物”研究参与者 NOK 进行了深入采访。最后的礼物研究是在生命终止的背景下进行的，涉及全身捐赠。 NOK 完成了两次访谈：(1) 参与者加入研究后不久；(2) 参与者死亡后。我们应用主题分析来分析定性数据。 NOK 包括七个人（五男两女），其中包括两名配偶、一名前伴侣、一名姐妹、一名祖母/祖父和一名密友。主题分析揭示了五个关键主题：（1）NOK以积极的态度看待“最后的礼物”计划，并对研究有准确的整体理解； (2) NOK 确定了激励参与者将遗体捐献给科学的因素； (3) NOK 确定了“最后的礼物”计划对捐赠者及其自身的好处； (4) NOK没有意识到研究有任何身体风险或决定后悔，但希望最大限度地减少社会心理影响并始终确保参与者的尊严； (5) NOK 指出了成功实施 EOL HIV 治疗相关研究仍然至关重要的要素，例如早期参与和清晰的沟通。我们的研究独特地有助于从支持性 NOK 的角度加深对重要事项的理解和认识，以确保 EOL HIV 治愈相关研究的成功实施。需要更多的研究来了解支持较少的挪威克朗的观点。