How can adolescent engagement shape mental health research? A qualitative exploration of the ALIVE study in Nepal
TL;DR
Engagement yielded benefits at multiple levels: among adolescents, participants reported increased self-confidence, communication skills, emotional awareness, leadership, and critical thinking; at the family level, caregivers described improved communication, greater awareness of mental health, and positive changes in adolescents’ behaviour and responsibilities; and at the research level, adolescent input enhanced the relevance, acceptability, feasibility, and contextual appropriateness of intervention and assessment tools.
Abstract
Adolescent mental health is a growing global concern, particularly in low- and middle-income countries like Nepal, where services are limited and stigma remains high. Despite evidence that participatory approaches improve intervention relevance and acceptability, adolescents are rarely engaged as active contributors in research. This study explored adolescent engagement in a pilot cluster-randomized controlled trial (the ALIVE project) to inform mental health research and intervention development in Nepal. This qualitative study documented adolescent engagement within the ALIVE project in Kathmandu, Nepal. Adolescent engagement was facilitated through an Adolescent Advisory Group (AAG), which included 22 adolescents aged 12–17 years across two phases of implementation between 2022 and 2025. Adolescents participated in monthly advisory sessions involving intervention co-design, research tool adaptation, feedback activities, and skill-building workshops focused on communication, leadership, problem-solving, and research literacy. Data for the engagement evaluation were collected toward the end of the AAG implementation period through focus group discussions with adolescent AAG members ( n = 21) and caregivers ( n = 10), a semi-structured interview with the lead facilitator ( n = 1), and programme documentation. Programme documentation included structured records completed after each AAG session capturing session activities, attendance, adolescent contributions, and facilitator reflections on the engagement process. Data were analysed thematically, with triangulation across data sources to enhance rigour. Adolescents engaged in structured and iterative activities, including intervention co-design, adaptation of research instruments, skill-building sessions, and reflective feedback exercises. Over time, participation evolved from initial consultation to more active contributions to intervention content, research tools, and implementation planning. Engagement yielded benefits at multiple levels: among adolescents, participants reported increased self-confidence, communication skills, emotional awareness, leadership, and critical thinking; at the family level, caregivers described improved communication, greater awareness of mental health, and positive changes in adolescents’ behaviour and responsibilities; and at the research level, adolescent input enhanced the relevance, acceptability, feasibility, and contextual appropriateness of intervention and assessment tools. Challenges included logistical barriers to participation, variability in engagement across group members, and difficulties communicating complex research concepts in developmentally appropriate ways. Participants recommended strengthening adolescent engagement through interactive and inclusive activities, stronger feedback mechanisms, ethical guidance, and sustainable structures to support ongoing adolescent involvement in mental health research. Meaningful adolescent engagement is feasible and beneficial in mental health research in Nepal. Structured, age-appropriate participatory strategies enhance intervention design, tool relevance, and adolescent empowerment, highlighting the value of ethical, sustainable, and well-documented engagement practices for future research.