Accelerating adolescent HIV research in low-income and middle-income countries: evidence from a research consortium.

OBJECTIVE: Many adolescents and young adults (AYA) have unmet HIV prevention needs. We describe the Prevention and Treatment through a Comprehensive Care Continuum for HIV-affected Adolescents in Resource Constrained Settings (PATC3H) consortium organization, transition milestones, and youth engagement strategies. The PATC3H consortium focuses on reducing HIV incidence and related health disparities among AYA. DESIGN AND METHODS: Organizational data were obtained from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and supplemented with a brief survey completed by study principal investigators. Transition from the initial phase (years 1 and 2) to the subsequent phase (years 3 and 5) was contingent on meeting prespecified milestones. We reviewed the structure and function of the research consortium, identified shared elements of transition milestones, and examined common youth engagement strategies. RESULTS: The PATC3H consortium supports eight research studies through a milestone transition mechanism. The consortium includes AYA HIV research studies in seven countries - Brazil, Kenya, Mozambique, Nigeria, South Africa, Uganda, and Zambia. The NIH request for applications required transition milestones that included early consultation with stakeholders. The transition milestones required by NIH for the eight studies included early consultation with health and policy stakeholders, pilot intervention data, and commitment from national government stakeholders. All studies provided multiple pathways for AYA engagement, including AYA advisory boards and youth-led research studies. CONCLUSION: Data suggest that requiring milestones to transition to the final phase may have facilitated health and policy stakeholder engagement and enhanced formative assessment of regulatory protocols. These data have implications for designing engaged research studies in low and middle-income countries.

Youth engagement in HIV prevention intervention research in sub-Saharan Africa: a scoping review.

INTRODUCTION: Youth engagement in HIV research is generally recognized as essential, but often neglected or minimally implemented in practice. Engagement is a process of working collaboratively with diverse groups of people to address common issues. We conducted a scoping review of youth HIV prevention interventions in sub-Saharan Africa to identify and categorize forms and levels of youth engagement across the lifespan of intervention research. METHODS: We followed Arksey and O'Malley's framework for organizing a scoping review. We searched seven databases for related articles on identified intervention studies through May 28th 2020. Included studies focused on youth (10 to 24 years old) HIV prevention interventions in sub-Saharan Africa. Two reviewers independently examined citations and full manuscripts for inclusion. Data were extracted on study characteristics, location, description of youth engagement and extent of engagement. Youth engagement approaches were categorized based on Hart's ladder as substantial engagement (strong youth decision-making power), moderate engagement (shared decision making with adults), minimal engagement (no youth decision-making power) or no engagement. RESULTS: We identified 3149 citations and included 112 studies reporting on 74 unique HIV interventions. Twenty-two interventions were in low-income countries, 49 in middle-income countries, and three were in both. Overall, only nine interventions (12%) had substantial or moderate youth engagement, two-thirds (48, 65%) had minimal youth engagement and 17 interventions (23%) had no youth engagement. We also identified specific engagement strategies (e.g. youth-led research, crowdsourcing) that were feasible in multiple settings and resulted in substantial engagement. CONCLUSIONS: We found limited youth engagement in youth HIV prevention intervention studies in sub-Saharan Africa. However, several activities resulted in substantial youth engagement and could be relevant in many low-and-middle-income-country (LMIC) settings.