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. 2023 Jan-Dec:22:23259582231170732.
doi: 10.1177/23259582231170732.

HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya

Emma Gillette  1 , Violet Naanyu  2 , Winstone Nyandiko  3   4 , Ashley Chory  1 , Michael Scanlon  5 , Josephine Aluoch  4 , Hillary Koros  4 , Celestine Ashimosi  4 , Whitney Beigon  4 , Dennis Munyoro  4 , Janet Lidweye  4 , Jack Nyagaya  4 , Allison DeLong  6 , Rami Kantor  6 , Rachel Vreeman  1   4
Affiliations

HIV-Related Stigma Shapes Research Participation for Youth Living With HIV in Kenya

Emma Gillette et al. J Int Assoc Provid AIDS Care. 2023 Jan-Dec.

Abstract

Introduction: HIV stigma affects medication adherence, psychosocial outcomes, and clinical management for youth living with HIV (YLWH). We explored the impact of HIV stigma on research participation, to inform the ethical engagement of this vulnerable group. Methods: We interviewed 40 YLWH, 20 caregivers, and 39 subject matter experts (SMEs); transcripts were analyzed by HK and EG, with emerging themes confirmed by JA and AC. Results: All categories of participants identified the impacts of stigma on YLWH research participation, suggesting implementing privacy protections, considering recruitment locations carefully, and developing supportive relationships with YLWH. SMEs suggested that YLWH experience uniquely high risks from stigma due to the compounding effects of developmental challenges and transitionary life period. Accidental HIV disclosure and subsequent stigma were identified as a risk of research participation; some viewed the creation of community through research as a benefit. Conclusion: Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols.

Keywords: HIV; Kenya; adolescents; bioethics; research; stigma; youth.

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Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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