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2025 ; 23
(1
): 140
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Co-creating a Canadian autism mental health literacy resource: a qualitative
analysis of advisory perspectives
#MMPMID41131502
Weiss JA
; Modica PT
; Gallant C
; Roudbarani F
; Weaver C
; Bouma A
; Goldsmith L
; Leef J
; Lunsky Y
Health Res Policy Syst
2025[Oct]; 23
(1
): 140
PMID41131502
show ga
BACKGROUND: Autistic 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. METHODS: This
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. RESULTS: A 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. CONCLUSIONS: These 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.