Journal of the International Association of Providers of AIDS Care (Apr 2023)

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

  • Emma Gillette MPH,
  • Violet Naanyu PhD,
  • Winstone Nyandiko MBChB, MMED, MPH,
  • Ashley Chory MPH,
  • Michael Scanlon MPH, MS,
  • Josephine Aluoch BSc, MS,
  • Hillary Koros MSc,
  • Celestine Ashimosi BSc,
  • Whitney Beigon Counseling Psychology,
  • Dennis Munyoro Health Records,
  • Janet Lidweye BSc,
  • Jack Nyagaya Counseling Psychology,
  • Allison DeLong MS,
  • Rami Kantor MD,
  • Rachel Vreeman MD, MS

DOI
https://doi.org/10.1177/23259582231170732
Journal volume & issue
Vol. 22

Abstract

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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.