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Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research
The British Journal of Psychiatry ( IF 10.5 ) Pub Date : 2024-02-16 , DOI: 10.1192/bjp.2023.151
Edmund J.S. Sonuga-Barke , Susie Chandler , Steve Lukito , Myrofora Kakoulidou , Graham Moore , Niki Cooper , Maciej Matejko , Isabel Jackson , Beta Balwani , Tiegan Boyens , Dorian Poulton , Luke Harvey-Nguyen , Sylvan Baker , Georgia Pavlopoulou

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.



中文翻译:

神经分歧的参与性转化科学:注意力缺陷/多动障碍和自闭症研究模型

背景

人们越来越多地呼吁神经分歧人群参与神经发育状况的研究。然而,到目前为止,这往往只能通过外部患者和公众参与 (PPI) 小组的成员身份来实现。调节情绪 - 加强青少年复原力 (RE-STAR) 项目正在建立一种新的参与式转化研究模式,将被诊断患有注意力缺陷多动障碍 (ADHD) 和自闭症的年轻人置于研究团队的核心位置,以便他们能够为制定和实施其研究计划做出贡献。

目标

概述 RE-STAR 参与模式所依据的原则,并描述其实际实施和好处,特别是关于青年研究员小组 (Y-RPers) 成员的核心作用。

方法

所提出的模型是 Y-RP 人员从顾问转变为整合到 RE-STAR 中的联合研究人员的 24 个月过程的顶峰。它是由共同意向性原则塑造的。经过学术研究人员、Y-RPers 和其他利益相关者之间多次迭代的合作讨论,我们同意了这里的说法。

结果

根据我们的集体反思,我们就如何有效地将患有多动症和/或自闭症诊断的年轻人纳入转化研究过程的核心提供一般指导。我们还描述了 Y-RPer 参与 RE-STAR 的具体理论、方法和分析优势。

结论

尽管处于起步阶段,RE-STAR 已经证明了该模型丰富转化科学的潜力,可以改变我们对自闭症、多动症和心理健康之间关系的理解。如果适当调整,我们相信该模型可以应用于其他类型的神经分歧和/或心理健康状况。

更新日期:2024-02-16
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