TY - JOUR
T1 - Participatory translational science of neurodivergence
T2 - model for attention-deficit/hyperactivity disorder and autism research
AU - RE-STAR team
AU - Sonuga-Barke, Edmund J.S.
AU - Chandler, Susie
AU - Lukito, Steve
AU - Kakoulidou, Myrofora
AU - Moore, Graham
AU - Cooper, Niki
AU - Matejko, Maciej
AU - Jackson, Isabel
AU - Balwani, Beta
AU - Boyens, Tiegan
AU - Poulton, Dorian
AU - Harvey-Nguyen, Luke
AU - Baker, Sylvan
AU - Pavlopoulou, Georgia
N1 - Funding Information:
The RE-STAR programme is supported by the Medical Research Council (grant number MR/W002493/1). E.J.S.S.-B. was additionally supported by the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King's College London.
Publisher Copyright:
© The Author(s), 2024.
PY - 2024/4/16
Y1 - 2024/4/16
N2 - Background There are increasing calls for neurodivergent peoples’ involvement in research into neurodevelopmental conditions. So far, however, this has tended to be achieved only through membership of external patient and public involvement (PPI) panels. The Regulating Emotions – Strengthening Adolescent Resilience (RE-STAR) programme is building a new participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the heart of the research team so that they can contribute to shaping and delivering its research plan. Aims To outline the principles on which the RE-STAR participatory model is based and describe its practical implementation and benefits, especially concerning the central role of members of the Youth Researcher Panel (Y-RPers). Method The model presented is a culmination of a 24-month process during which Y-RPers moved from advisors to co-researchers integrated within RE-STAR. It is shaped by the principles of co-intentionality. The account here was agreed following multiple iterative cycles of collaborative discussion between academic researchers, Y-RPers and other stakeholders. Results Based on our collective reflections we offer general guidance on how to effectively integrate young people with diagnoses of ADHD and/or autism into the core of the translational research process. We also describe the specific theoretical, methodological and analytical benefits of Y-RPer involvement in RE-STAR. Conclusions Although in its infancy, RE-STAR has demonstrated the model’s potential to enrich translational science in a way that can change our understanding of the relationship between autism, ADHD and mental health. When appropriately adapted we believe the model can be applied to other types of neurodivergence and/or mental health conditions.
AB - Background There are increasing calls for neurodivergent peoples’ involvement in research into neurodevelopmental conditions. So far, however, this has tended to be achieved only through membership of external patient and public involvement (PPI) panels. The Regulating Emotions – Strengthening Adolescent Resilience (RE-STAR) programme is building a new participatory model of translational research that places young people with diagnoses of attention-deficit hyperactivity disorder (ADHD) and autism at the heart of the research team so that they can contribute to shaping and delivering its research plan. Aims To outline the principles on which the RE-STAR participatory model is based and describe its practical implementation and benefits, especially concerning the central role of members of the Youth Researcher Panel (Y-RPers). Method The model presented is a culmination of a 24-month process during which Y-RPers moved from advisors to co-researchers integrated within RE-STAR. It is shaped by the principles of co-intentionality. The account here was agreed following multiple iterative cycles of collaborative discussion between academic researchers, Y-RPers and other stakeholders. Results Based on our collective reflections we offer general guidance on how to effectively integrate young people with diagnoses of ADHD and/or autism into the core of the translational research process. We also describe the specific theoretical, methodological and analytical benefits of Y-RPer involvement in RE-STAR. Conclusions Although in its infancy, RE-STAR has demonstrated the model’s potential to enrich translational science in a way that can change our understanding of the relationship between autism, ADHD and mental health. When appropriately adapted we believe the model can be applied to other types of neurodivergence and/or mental health conditions.
KW - ADHD
KW - adolescence
KW - Autism
KW - neurodiversity
KW - patient
KW - public involvement
UR - http://www.scopus.com/inward/record.url?scp=85185264582&partnerID=8YFLogxK
U2 - 10.1192/bjp.2023.151
DO - 10.1192/bjp.2023.151
M3 - Article
C2 - 38362636
AN - SCOPUS:85185264582
SN - 0007-1250
VL - 224
SP - 127
EP - 131
JO - British Journal of Psychiatry
JF - British Journal of Psychiatry
IS - 4
ER -