Research Participation and Feedback: Perception of Adolescents and Young Adults Living with HIV in Lagos, Nigeria

Evidence-based research remains the cornerstone in changing the narrative of wholesome health among Adolescents and Young Adults Living with HIV (AYALHIV). However, little is known about the perceptions of AYALHIV in research participation and outcomes, in low- and middle-income countries, especially in sub-Saharan Africa. This study describes the perception of AYALHIV in research participation and outcome in Lagos, Nigeria.

The study population was drawn from a cohort of participants in a cross-sectional study at the Nigerian Institute of Medical Research. The survey questions were on perceptions of the importance of research participation, the frequency, understanding of participation in research, the interest in the outcome, the knowledge of the interpretation of the outcome and the willingness to participate in future studies. Data obtained was analyzed using SPSS version 26.0.

The mean age of the AYALHIV was 15.7(±3.1) years, with a male-to-female ratio of (0.8:1), and 85.7% on antiretroviral drugs for at least five years. Seventy-two percent (46/63) have been involved in previous studies at least once, with only 27% (17/63) informed on the outcome of the research they have ever participated. Only 30% (19) of participants understood they were involved in research, with 92% interested in the study outcome. 87.3% (55) will request more information before participating in future research activities.

Educating AYALHIV on research participation is important in promoting concerted efforts by researchers towards improving engagement, patient-centred care, and research dissemination.