MD Student Temerty Faculty of Medicine, University of Toronto, United States
Background: In Canada, despite universal healthcare, immigrant and racially marginalized families face unique barriers when accessing autism spectrum disorder (ASD) services for their children. Exploring these experiences is critical to inform the federal government’s efforts to create a national autism strategy that serves children and families with ASD in Canada.
Objective: We conducted a scoping review of immigrant, refugee, and racially marginalized families’ access to, utilization, and experiences with ASD services in Canada.
Design/Methods: The Joanna Briggs Institute scoping review methodology was used. A literature search in MEDLINE, EMBASE, CINAHL, APA PsycINFO, Scopus, and Web of Science was conducted in August 2023. Title, abstract, and full-text screening were conducted independently by two reviewers. English and French-language qualitative studies describing the experiences of marginalized families in Canada with accessing and/or using ASD services for their child < 18 years were included. For included studies, two reviewers extracted data and appraised articles using the Critical Appraisal Skills Programme qualitative checklist.
Results: There were 4,489 search results. After de-duplication, 3,804 studies remained. Of these studies, 12 met inclusion criteria – representing 320 immigrant caregivers living in Ontario (n=167), Quebec (n=151), and British Columbia (n=2). Caregivers immigrated from Africa (n=55), Latin America (n=43), Europe (n=25), Asia (n=13), North America (n=11), the Middle East (n=4), and unreported (n=169). No studies focused on refugees.
Common barriers when accessing ASD services were related to: difficulties navigating the health system (wait times, limited resources in the public system, high costs for private services, lack of collaboration between school and healthcare providers); challenges interacting with service providers (feeling unheard, discrimination, lack of continuity of care); and cultural differences (regarding ASD, language barriers, social isolation). In contrast, families identified supportive healthcare and school personnel, provision of culturally-specific multilingual resources, and parent-led peer support networks as key facilitators to ASD service access and use.
Conclusion(s): These results highlight caregiver-reported barriers and facilitators to ASD service delivery among marginalized families in Canada, as well as gaps in research around the experiences of refugee families. Our findings reiterate the importance of caregiver involvement in informing evidence-based recommendations to improve Canadian service provision, policy, and research.
