How to address the barriers to meaningful adolescent involvement in health research: A qualitative study.

Abstract

The under-involvement of adolescents in health research has been attributed to multiple barriers faced by both researchers and adolescents. Despite identifying these barriers, the literature offers few solutions, mostly from the perspective of researchers. To address this, we conducted a qualitative study to explore effective strategies to address these barriers from the perspective of both researchers and adolescents. We conducted semi-structured interviews with adolescents (n = 25) and researchers (n = 25) from 14 countries. We included adolescents aged 10-24 years with experience of contributing to health research studies and health researchers with experience of engaging adolescents in health research. The interviews explored the mitigation strategies to commonly reported barriers to meaningful adolescent involvement for researchers and adolescents. Data were analyzed using reflexive thematic analysis. We identified three overarching strategies to address the commonly experienced barriers to adolescent involvement. First, participants suggested the need to plan for adequate resources, organizational support, capacity building, accessibility, compensation, and adolescents' safety. Second, they recommended building relationships by engaging the community, fostering trust and respect with adolescents, promoting teamwork, and maintaining transparent communication. Third, they proposed making involvement engaging for adolescents by creating a conducive environment, increasing their representation, using interesting methods, and addressing power dynamics. These findings build on the current best practices for adolescent involvement in health research by highlighting which strategies should be incorporated early on to plan for and prevent potential challenges to adolescent involvement.