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

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Kakoulidou, M., Pavlopoulou, G., Chandler, S., Lukito, S., Matejko, M., Jackson, I., Balwani, B., Boyens, T., Poulton, D., Harvey-Nguyen, L., Glen, Z., Wilson, A., Ly, E., Macauley, E., Baker, S., Bullen, G., Sonuga-Barke, E. J., & team, R. (2024). 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. JCPP Advances, 4(4), Article e12287. https://doi.org/10.1002/jcv2.12287

Publication date: 1 Dec 2024 Added to AutiHub: 9 Oct 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
18
Publication authors identified as autistic
2 / 18 (11.1%)
  1. Myrofora Kakoulidou
  2. Georgia Pavlopoulou
  3. Susie Chandler
  4. Steve Lukito
  5. Maciej Matejko *
  6. Isabel Jackson
  1. Beta Balwani
  2. Tiegan Boyens
  3. Dorian Poulton
  4. Luke Harvey-Nguyen
  5. Zoë Glen *
  6. Archie Wilson
  1. Elisa Ly
  2. Elizabeth Macauley
  3. Sylvan Baker
  4. Georgina Bullen
  5. Edmund J.S. Sonuga-Barke
  6. RE‐STAR team

Abstract

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.

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 17 Oct 2026 01:28.

Cited references
37
With a DOI
29
Without a DOI, from raw bibliography text
8
13 / 37 (35.1%) cited references include at least one author identified as autistic.
References with data to complete
2 / 37 (5.4%)
References with detected author names
35 / 37 (94.6%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
8
References with raw author names still to review
1
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
156
From DOI or external metadata
156
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
8
101 / 156 (64.7%) names are linked to an author already present in AutiHub. 55 / 156 (35.3%) names are not yet linked.
Names linked to a person identified as autistic
35 / 156 (22.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 35 / 101 (34.7%). Distinct people identified as autistic: 29 / 131 (22.1%).
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