Sonuga-Barke, Edmund JS;
Chandler, Susie;
Lukito, Steve;
Kakoulidou, Myrofora;
Moore, Graham;
Cooper, Niki;
Matejko, Maciej;
... RE-STAR team*; + view all
(2024)
Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research.
The British Journal of Psychiatry (BJPsych)
pp. 1-5.
10.1192/bjp.2023.151.
(In press).
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Abstract
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.
| Type: | Article |
|---|---|
| Title: | Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1192/bjp.2023.151 |
| Publisher version: | http://dx.doi.org/10.1192/bjp.2023.151 |
| Language: | English |
| Additional information: | Copyright © The Author(s), 2024. Published by Cambridge University Press on behalf of Royal College of Psychiatrists. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited. |
| Keywords: | Autism; ADHD; adolescence; neurodiversity; patient and public involvement |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10188165 |
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