The ARISE (Autism Research Initiatives for Suicidality and Empowerment) Project: A study protocol for a modified James Lind Alliance priority-setting process determining research priorities for suicidality in autistic youth.

چکیده اصلی

INTRODUCTION: Autistic children and adolescents (herein, youth) are at 3.5 times greater risk of suicide attempts and deaths than the general population, with attempts beginning as early as 10 years of age. However, little is known about the predictors of suicidality or how to provide adequate support to prevent premature mortality in autistic youth. This study will fill critical research and knowledge gaps by identifying the needs and preferences for future research on suicidality in autistic youth. By completing this process alongside the perspectives of caregivers, clinicians and policymakers, we will also determine critical knowledge-to-action steps that will inform future clinical practice and policy directions. METHODS AND ANALYSIS: Using a modified James Lind Alliance priority-setting process (JLA PSP) grounded in a patient engagement approach, the current study will identify key research priorities on suicidality in autistic youth. Our modified JLA PSP process will include: (1) forming a steering committee, (2) conducting a rapid literature review, (3) carrying out a survey across Canada, and (4) collaboratively identifying and disseminating consensus-based research priorities. Questions generated from survey responses will be summarised and then discussed in a priority-setting workshop to identify and agree on a list of the top research priorities for suicidality in autistic youth. ETHICS AND DISSEMINATION: This study has received ethics approval by the University of Calgary Conjoint Faculties Research Ethics Board (REB24-1761). A risk protocol is in place, which outlines the procedure to be undertaken if a participant contacts the research team in distress. Survey respondents will provide informed consent before participation and have access to a resource page containing contact details for a range of support services. Members of the steering committee will have an opportunity to debrief and process difficult discussions with a researcher and clinician with training in suicide and mental health in autism.The top research priorities list will be disseminated through peer-reviewed publications and conference publications on both the top priorities and the engagement process with partners, as well as policy briefs for national mental health and suicide strategies, community presentations and social media. In partnership with our community partner organisations, we will conduct webinars for researchers and clinicians as well as community events. Steering committee members (including autistic youth and their caregivers) will be included in co-creating knowledge translation activities.With more than one-third of autistic people experiencing suicidality, and a quarter making at least one attempt, better understanding the priorities in this under-researched area has the potential to save many lives as the identification of autism in youth and adults continues to increase.

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