ArticleHealth research policy and systems2025
Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives.
Article in Health research policy and systems, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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Who cites it
1 citing paper in PubMed.
- Improving the health of people with intellectual disability: past progress and future directions.Frontiers in psychiatry · 2026Article
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Authors and funding
9 authors.
Funding
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Abstract
backgroundAutistic adults experience disproportionately high rates of mental health challenges and encounter substantial barriers to care. While initiatives aimed at improving mental health literacy (MHL) offer one strategy for addressing these disparities, the processes through which such initiatives are co-produced with autistic adults and caregivers remain underexplored. Co-production - the collaborative development of resources or knowledge between researchers and community members - can enhance the relevance, authenticity, and impact of health initiatives. The central aim of this study was to understand how autistic adults and caregivers experienced their involvement in the co-production of an applied health research initiative. To inform future initiatives, there is a need to understand stakeholder experiences of the co-production process.
methodsThis study examined the experiences of stakeholders engaged in the co-production of a Canadian MHL resource for autistic adults and their families. Although the context of the project focused on MHL, the central aim was to understand how autistic adults and caregivers experienced their involvement in the co-production process. Semi-structured interviews were conducted with 24 autistic adults and caregivers who served as advisors in the Autism Mental Health Literacy Project (AM-HeLP). A reflexive thematic analysis approach was used to identify key experiential themes related to their involvement.
resultsA thematic analysis identified four main stakeholder experience themes: (1) the elements of co-production, (2) the collaboration process, (3) insights gained and (4) emotional impact of involvement.
conclusionsThese findings highlight the critical importance of intentional, inclusive and trauma-informed co-production practices in applied health research. They offer practical guidance for researchers, service providers and policymakers seeking to authentically engage autistic adults and families in the development of health-related resources. Supporting equitable partnerships with autistic adults and caregivers is essential to advancing responsive and person-centred health policy and practice.
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