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

Background

There 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.

Methods

Development – 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).

Results

Development - 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.

Conclusions

This 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.