The role of trust and relationship building in the ethical recruitment of youth living with HIV in research: perspectives from Kenyan youth living with HIV, their caregivers and subject matter experts

Abstract

Background: Inclusion of youth (10-24 years) living with HIV (YLWH) in clinical research is critical to addressing their unique vulnerabilities and improving care outcomes. Examining the role of trust and relationship building in research decision-making is critical to designing ethical recruitment and engagement strategies. Methods: We conducted in-depth, semi-structured interviews with YLWH (10-24 years, enrolled in HIV care at Academic Model Providing Access to Healthcare (AMPATH) in western Kenya), caregivers (parents and guardians) of YLWH, and other subject matter experts (SMEs). Interviews focused on barriers, facilitators, and strategies to improve participant-researcher trust and relationship building, with a particular focus on recruitment and engagement strategies. Interviews were conducted with 99 participants (53% male): 40 YLWH [median age 17.5, (range 11- 24), 50% female], 20 caregivers of enrolled YLWH (70% female), and 39 SMEs (33% female; 46% community leaders, 26% healthcare providers, 15% clinical researchers, 8% social scientists, 3% international research experts, 2% laboratory experts). Results: All groups indicated trust could be built and broken through research processes. YLWH and SMEs viewed participant identification and study recruitment through medical records as a violation of trust, indicating that their HIV status and health information should remain confidential between themselves and their clinical team. All groups preferred recruitment through existing clinician- YLWH relationships, emphasizing the importance of privacy and confidentially; this strategy was viewed as stronger and more ethical. Losses of confidentiality and mistakes in sample collection that require participants to attend additional, unnecessary research visits or provide additional samples were identified by all groups as additional barriers to relationship-building. YLWH and caregivers discussed researcher characteristics that support relationship-building, emphasizing the importance of positive demeanors and non-stigmatizing behaviors by research personnel. YLWH and SMEs discussed operational needs that foster relationship-building, including proper communication about study procedures, reliably reporting results to participants, and receiving future benefits. Conclusions: Trusting participant-researcher relationships plays an important role in YLWH research decision making and greatly influence the development of ethical recruitment strategies. Study participants highlighted more appropriate and ethical recruitment strategies, stemming from strong participant-researcher relationships.