YOUTH advisory boards in HIV research remain under-evaluated, despite shaping study planning, implementation, and community engagement.
Youth Advisory Boards in HIV Research
Youth advisory boards are playing an important role in HIV research in low- and middle-income countries, according to a new scoping review that also integrated reflections from young people with direct advisory board experience. The study examined how youth advisory boards were structured, what responsibilities they held, and how much influence they appeared to have across the research process.
The review identified 10 published studies from five countries, then supplemented these findings with five additional youth reflections from studies that were unpublished or fell outside the review criteria. Across the combined dataset, most studies were conducted in sub–Saharan Africa and focused largely on HIV prevention, with fewer addressing diagnostics or linkage to care. Other parts of the HIV care continuum, including care retention and viral suppression, were not represented.
How Youth Engagement Was Used
Most youth advisory boards had more than 10 members, and the majority were made up exclusively of young people. Where inclusion criteria were specified, they often aimed to center diverse youth perspectives, including variation in geography, lived experience, and HIV status. Advisory boards commonly contributed to intervention design, community engagement, recruitment, retention, and implementation activities. They also helped researchers develop materials and shape study processes through meetings, consultations, discussions, and workshops.
The authors found that youth engagement most often occurred during the planning phase and, less frequently, during study conduct. Dissemination was the least represented stage. Most advisory boards reflected shared decision making between youth and adults, although the overall depth of participation varied. Youth reflections sometimes suggested stronger empowerment than was evident in the published literature, raising questions about whether youth contributions may be underreported in formal manuscripts.
Need For Better Evaluation
Although several studies described concrete changes to study design or content following youth input, none formally evaluated youth engagement. Only a small number explicitly linked advisory board involvement to study outcomes. The authors conclude that youth advisory boards are increasingly recognized in HIV research, but their impact remains inconsistently defined and insufficiently assessed. They call for clearer evaluation frameworks, stronger institutional support, and more sustained integration of youth perspectives across all stages of research.
Reference
Chima KP et al. Youth advisory board engagement in HIV research in low- and middle-income countries: a scoping review and additional youth perspectives. Sex Health. 2026;23(2):SH25178.
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