Deepening the participation of neurodivergent youth in qualitative mental health research: Co‐development of a general approach and the evaluation of its implementation in a study on emotion

Abstract

BackgroundThere is a growing expectation that neurodivergent young people, such as those with diagnoses of attention‐deficit/hyperactivity disorder (ADHD) and/or autism, should play a central role in shaping research on neurodevelopmental conditions. However, currently, their involvement is typically limited to arms‐length advice. To address this, the Regulating Emotions‐Strengthening Adolescent Resilience (RE‐STAR) programme has co‐developed a framework for deepening the involvement of neurodivergent participants in translational research. Here we apply this to build, implement and evaluate a new approach to participatory qualitative research.MethodsDevelopment – Building on the track record of successful collaboration between RE‐STAR academic researchers (ARs) and its Youth Researcher Panel (Y‐RP), a cycle of meetings was convened to co‐develop a collaborative protocol for the participatory approach. Implementation – ARs and Y‐RPers applied the general protocol to study a specific topic. This involved co‐designing and co‐delivering an interview schedule to study the emotional experiences of 12 adolescents with diagnoses of ADHD and/or autism and then co‐analysing the interviews. Evaluation – ARs, Y‐RPers and interviewees shared their reflections on the participatory approach and its implementation, during interviews (N = 36) and short open‐ended surveys (N = 22).ResultsDevelopment ‐ The protocol for the participatory approach gave detailed advice on how to engage Y‐RP members (or equivalent) in the co‐design, co‐delivery and co‐analysis of interviews. Implementation ‐ The approach was successfully implemented by ARs and Y‐RPers working together to co‐design an interview to study the emotional lives of adolescents with diagnoses of ADHD and/or autism, co‐deliver it and then co‐analyse the interview scripts. Evaluation ‐ The implementation experience of the Y‐RP, ARs and interviewees was characterised by common themes relating to (a) adapting research methods and making practical adjustments; (b) taking on new roles, adding value to research and (c) valuing neurodivergent characteristics.ConclusionsThis new RE‐STAR protocol proved feasible to implement in a way that was generally perceived, from multiple perspectives, to add depth and authenticity to research into the experiences of neurodivergent young people.