Department of Global Health and Health Systems Design, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
Moi University College of Health Sciences, Eldoret, Kenya.
J Empir Res Hum Res Ethics. 2023 Oct;18(4):175-188. doi: 10.1177/15562646231193949. Epub 2023 Aug 13.
Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. Interviews were conducted with 99 participants: 40 YLWH (median age 17.5, 50% female), 20 caregivers (70% female), and 39 SMEs (44% female). All participant groups discussed the need for HIV disclosure status assessment, confidentiality, and engagement of caregivers. Youth participants discussed the importance of clear protocol explanations and developing good rapport. All participant groups perceived youth under 18 to be harder to recruit due to a number of identified barriers. Clinic settings were the most acceptable place for recruitment. Participants provided perspectives on engaging YLWH in research that can be incorporated into protocols and regulatory guidelines.
让感染艾滋病毒的青年（YLWH）参与研究对于改善与艾滋病毒相关的结果至关重要，但他们的参与引发了尚未解决的生物伦理问题。本研究采用定性研究方法，对肯尼亚的 YLWH、照顾者和主题专家（SMEs）进行了评估，以评估涉及 YLWH 的研究的伦理考虑因素和策略。对 99 名参与者进行了访谈：40 名 YLWH（中位数年龄为 17.5 岁，50%为女性），20 名照顾者（70%为女性）和 39 名 SMEs（44%为女性）。所有参与者群体都讨论了需要评估艾滋病毒披露状况、保密性和照顾者的参与情况。青年参与者讨论了明确协议解释和建立良好关系的重要性。所有参与者群体都认为，由于确定的一些障碍，18 岁以下的青少年更难招募。诊所是招募的最可接受场所。参与者提供了有关让 YLWH 参与研究的观点，这些观点可以纳入方案和监管指南。
