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Perceptions of Risks and Benefits of Participating in HIV Cure-Related Research Among Diverse Young Adults Living with HIV in the United States: Qualitative Research Findings
AIDS Research and Human Retroviruses ( IF 1.5 ) Pub Date : 2022-08-05 , DOI: 10.1089/aid.2021.0192
Parya Saberi 1 , Chadwick K Campbell 1 , John A Sauceda 1 , Samuel Ndukwe 2 , Karine Dubé 2
Affiliation  

In the United States, young adults have the highest rates of new HIV infections, and are less likely to be aware of their infection, be engaged in care, or achieve HIV viral suppression. As biomedical HIV research increasingly focuses on achieving long-term suppression without antiretroviral therapy (ART) and finding an HIV cure, little is known about perceptions of young adults living with HIV (YLWH) regarding HIV cure research. We recruited a diverse sample of 20 YLWH (18–29 years old) to participate in individual semistructured qualitative interviews to explore knowledge and perceptions of HIV cure research, and motivations and barriers to participation. Most participants had little knowledge of HIV cure research. Motivators of HIV cure research participation included altruism, stigma reduction, and the elimination of the clinical burdens of HIV. Barriers included potential physical side effects, psychological distress, the possibility of disclosure as a result of participating, and the amount of time required to participate. Most participants had concerns about analytic treatment interruptions (i.e., ART interruption to assess HIV remission), and indicated that they would want more frequent laboratory testing and protection for their sex partners during this time. Finally, participants suggested that, if other YLWH are considering participation in cure research, they should first learn as much as possible about the research, and then consider the potential personal benefits and the contribution that they could make to science and their communities. As HIV cure research advances, the participation of YLWH will be critical. Our study provides knowledge about how YLWH view HIV cure research. More sociobehavioral research is needed to ensure that those who are most likely to be the decision-makers and beneficiaries of an HIV cure are included at all levels of research.

中文翻译:

美国不同的艾滋病毒感染者对参与艾滋病毒治疗相关研究的风险和益处的看法:定性研究结果

在美国,年轻人的艾滋病毒新感染率最高,并且不太可能意识到自己的感染、参与护理或实现艾滋病毒病毒抑制。随着艾滋病毒生物医学研究越来越关注在不使用抗逆转录病毒疗法 (ART) 的情况下实现长期抑制以及寻找艾滋病毒治疗方法,人们对年轻艾滋病毒感染者 (YLWH) 对艾滋病毒治疗研究的看法知之甚少。我们招募了 20 名 YLWH(18-29 岁)的不同样本来参加个人半结构化定性访谈,以探讨对 HIV 治愈研究的知识和看法,以及参与的动机和障碍。大多数参与者对艾滋病毒治疗研究知之甚少。参与艾滋病毒治疗研究的动机包括利他主义、减少耻辱和消除艾滋病毒的临床负担。障碍包括潜在的身体副作用、心理困扰、参与结果披露的可能性以及参与所需的时间。大多数参与者对分析治疗中断(即为了评估 HIV 缓解而中断 ART)表示担忧,并表示他们希望在此期间对其性伴侣进行更频繁的实验室检测和保护。最后,与会者建议,如果其他 YLWH 正在考虑参与治疗研究,他们应该首先尽可能多地了解该研究,然后考虑潜在的个人利益以及他们可以对科学和社区做出的贡献。随着艾滋病毒治疗研究的进展,YLWH 的参与将至关重要。我们的研究提供了有关 YLWH 如何看待 HIV 治疗研究的知识。需要更多的社会行为研究,以确保那些最有可能成为艾滋病毒治疗的决策者和受益者的人被纳入各级研究。
更新日期:2022-08-09
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