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

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 careg...

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Bibliographic Details
Published in:Journal of the International Association of Providers of AIDS Care 2023-01, Vol.22, p.23259582231170732-23259582231170732
Main Authors: Gillette, Emma, Naanyu, Violet, Nyandiko, Winstone, Chory, Ashley, Scanlon, Michael, Aluoch, Josephine, Koros, Hillary, Ashimosi, Celestine, Beigon, Whitney, Munyoro, Dennis, Lidweye, Janet, Nyagaya, Jack, DeLong, Allison, Kantor, Rami, Vreeman, Rachel
Format: Article
Language:English
Subjects:
Adolescent
Caregivers
Community research
HIV
HIV Infections - drug therapy
HIV Infections - psychology
Human immunodeficiency virus
Humans
Kenya
Medication Adherence
Original
Participation
Privacy
Recruitment
Social Stigma
Stigma
Youth
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Summary: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.
ISSN:2325-9582
2325-9574
2325-9582
DOI:10.1177/23259582231170732