Participatory translational science of neurodivergence: model for attention-deficit/hyperactivity disorder and autism research.

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.

Links between mental health problems and future thinking from the perspective of adolescents with experience of depression and anxiety: a qualitative study.

BACKGROUND: Depression and anxiety are common during adolescence and could have detrimental impacts on young people's ability to make and implement plans for their future. However, to the best of our knowledge, no other study has adopted a qualitative approach in investigating these effects from the perspective of adolescents with lived experiences of depression and anxiety. We sought to understand how young people perceive and interpret the impact of mental health conditions on their thinking about the future. METHODS: We conducted semi-structured interviews with 19 adolescents aged 16-19 years in the UK (median age = 19, IQR = 1.5), who had a history of protracted periods of clinical or subclinical depression and/or anxiety. They were asked to reflect on how their ability to think about the future and the content of the future-related thinking was impacted during periods of poor mental health, compared with periods of feeling well. Interviews were transcribed verbatim and subjected to thematic content analysis. RESULTS: Five domains were identified. First, the impact of mood on future thinking capability focuses on reduced ability and motivation to engage in future thinking. Second, the impact of mood on images, thoughts, and feelings about the future includes the emotional valence of future-related thoughts, their vividness, structure, and the extent to which they intimated subjective feelings of control (i.e., agency). Third, social influences focuses on social factors that might ameliorate or exacerbate future thinking. Fourth, reflections on personal worries and expectations about the future captures personal interpretations of past worries and hopes and how future thinking affected mood. Finally, personal coping refers to how young people cope with the negative emotions that come with future thinking. CONCLUSIONS: This study provided a nuanced and granular account of how depression and anxiety impacted young people's future thinking based on their lived experiences. By highlighting the different ways that variations in future thinking were experienced as a function of depression and anxiety, our analysis highlighted new factors that should be considered in studies of adolescent mental health risk, which could inform the development of new therapeutic approaches.