PDF(Pubmed)
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.
OBJECTIVE: 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).
METHODS: 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.
OBJECTIVE: 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).
METHODS: 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.
摘要：
背景：越来越多的人呼吁神经分化人群参与神经发育状况的研究。到目前为止,然而,这往往只能通过外部患者和公众参与(PPI)小组的成员资格来实现.调节情绪-加强青少年复原力（RE-STAR）计划正在建立一种新的参与式转化研究模式，将诊断出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，以便他们可以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小组（Y-RPers）成员的核心作用。
方法：所提出的模型是24个月过程的高潮，在此期间Y-RPers从顾问转移到RE-STAR中的共同研究人员。它是由共同意愿原则塑造的。这里的说明是在学术研究人员之间进行了多次迭代的协作讨论之后达成的，Y-RPers和其他利益相关者。
结果：基于我们的集体思考，我们提供了关于如何有效地将诊断为ADHD和/或自闭症的年轻人纳入转化研究过程的核心的一般指导。我们还描述了具体的理论，Y-RPer参与RE-STAR的方法学和分析效益。
结论：尽管处于起步阶段，RE-STAR已经证明了该模型的潜力，以丰富翻译科学的方式，可以改变我们对自闭症之间关系的理解，ADHD与心理健康如果经过适当调整，我们相信该模型可以应用于其他类型的神经分化和/或精神健康状况。
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小组（Y-RPers）成员的核心作用。
方法：所提出的模型是24个月过程的高潮，在此期间Y-RPers从顾问转移到RE-STAR中的共同研究人员。它是由共同意愿原则塑造的。这里的说明是在学术研究人员之间进行了多次迭代的协作讨论之后达成的，Y-RPers和其他利益相关者。
结果：基于我们的集体思考，我们提供了关于如何有效地将诊断为ADHD和/或自闭症的年轻人纳入转化研究过程的核心的一般指导。我们还描述了具体的理论，Y-RPer参与RE-STAR的方法学和分析效益。
结论：尽管处于起步阶段，RE-STAR已经证明了该模型的潜力，以丰富翻译科学的方式，可以改变我们对自闭症之间关系的理解，ADHD与心理健康如果经过适当调整，我们相信该模型可以应用于其他类型的神经分化和/或精神健康状况。
