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Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya.
Journal of Empirical Research on Human Research Ethics ( IF 1.3 ) Pub Date : 2023-08-13 , DOI: 10.1177/15562646231193949
Ashley Chory 1 , Winstone Nyandiko 2, 3 , Emma Gillette 1 , Michael Scanlon 4 , Josephine Aluoch 3 , Hillary Koros 3 , Dennis Munyoro 3 , Celestine Ashimosi 3 , Whitney Beigon 3 , Janet Lidweye 3 , Jack Nyagaya 3 , Allison DeLong 5 , Rami Kantor 5 , Rachel Vreeman 1, 3 , Violet Naanyu 3, 6
Affiliation  

Introduction: Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. Methods: This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. Results: 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. Conclusion: Participants provided perspectives on engaging YLWH in research that can be incorporated into protocols and regulatory guidelines.

中文翻译:

让感染艾滋病毒的青少年参与研究的伦理考虑:肯尼亚青少年、他们的照顾者和主题专家的观点。

简介:让艾滋病毒青少年 (YLWH) 参与研究对于改善艾滋病毒相关结果至关重要,但他们的参与引发了尚未解决的生物伦理问题。方法:本研究对肯尼亚 YLWH、护理人员和主题专家 (SME) 进行定性调查,以评估涉及 YLWH 的研究的伦理考虑和策略。结果:对 99 名参与者进行了访谈:40 名 YLWH(中位年龄 17.5 岁,50% 女性)、20 名护理人员(70% 女性)和 39 名中小企业(44% 女性)。所有参与者小组都讨论了艾滋病毒披露状况评估、保密性和护理人员参与的必要性。青年参与者讨论了明确的方案解释和建立良好融洽关系的重要性。所有参与团体都认为,由于存在一些已知的障碍,18 岁以下的青少年更难招募。诊所环境是最可接受的招募场所。结论:参与者提供了有关 YLWH 参与可纳入方案和监管指南的研究的观点。
更新日期:2023-08-13
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