Ethical Considerations for Engaging Youth Living with HIV in Research

Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya

Bibliographic Data

ID12806983
AuthorsAshley Chory (0000-0002-3551-5341, Icahn School of Medicine at Mount Sinai), Winstone Nyandiko (0000-0002-7639-9287, Moi University), Emma Gillette (0000-0003-2719-5138, Icahn School of Medicine at Mount Sinai), MICHAEL SCANLON (0000-0002-0334-5640, Indiana University Health), Josephine Aluoch (0000-0003-2174-2006, AMPATH), Hillary Koros (0000-0003-0888-8174, AMPATH), Dennis Munyoro (AMPATH), Celestine Ashimosi (0000-0002-1102-1400, AMPATH), Whitney Beigon (AMPATH), Janet Lidweye (AMPATH), Jack Nyagaya (AMPATH), Allison DeLong (0000-0001-8660-8073, Brown University), Rami Kantor (0000-0003-3659-1108, Brown University), Rachel Vreeman (0000-0001-5460-8204, AMPATH, corresponding author), Violet Naanyu (0000-0003-0182-1719, Moi University)
Year2023
Volume18
Issue4
Pages175-188
Publication date2023-08-13
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueJournal of Empirical Research on Human Research Ethics (JOURNAL)
Journal identifiersISSN: 1556-2646 • E-ISSN: 1556-2654
PublisherSAGE Publishing (PUBLISHER • US)
DOI10.1177/15562646231193949
PMID37574803
OpenAlexW4385798422
LanguageEN
References cited33

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

Alternative medicine · Bioethics · Confidentiality · Family medicine · Human immunodeficiency virus (HIV · Informed consent · Kenya · Medical education · Political science · Psychiatry · Qualitative research · Research ethics · Sociology · Subject matter · Adolescent Sexual and Reproductive Health · Ethics in Clinical Research · HIV/AIDS Research and Interventions · Medicine · Nursing · Psychology