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. 2023 Oct;18(4):175-188.
doi: 10.1177/15562646231193949. Epub 2023 Aug 13.

Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya

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
Affiliations

Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya

Ashley Chory et al. J Empir Res Hum Res Ethics. 2023 Oct.

Abstract

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.

Keywords: HIV; adolescents; bioethics; caregivers; research.

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Conflict of interest statement

Conflicts of Interest: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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