A Scoping Review on Barriers and Access to Services Among Immigrant Families of Children with Intellectual and Developmental Disabilities (IDD)

Background and purpose: In the past two decades, the number of international migrants has grown drastically (United Nations, 2017). With the rise of immigration, it is critical to examine the experiences of immigrant families of children with IDD. Literature has shown that immigrant families of children with IDD are underserved in current healthcare system (Lin, Yu, & Harwood, 2012). Barriers to diagnosis and treatment services often lead to negative outcomes for both children with IDD and their family caregivers (Sritharan & Koola, 2019). Culturally relevant evidence-based interventions to address immigrant families’ needs are emerging (Lopez, Magaña, Morales, & Iland, 2019). However, there is a lack of systematic synthesis of existing literature on the barriers and access to services. This study systematically reviewed existing research evidence from peer-reviewed journals published between 2000 and 2019 and unpublished doctoral dissertations, on barriers and access to services among immigrant families of children with IDD in the US.

Methods: We conducted a systematic search in ten electronic databases. Literature search in the first phase was supplemented by manual search and screening of key journals, reference lists of relevant studies, and on Google Scholar in the second phase to identify eligible articles. For the scope of this study, a scoping review framework was used due to the limited availability in research specification and empirical investigation. Three reviewers independently screened studies, extracted data, and synthesized relevant findings following the PRISMA standardized reporting items checklist. For qualitative studies, we used thematic analysis strategy to identify themes that were relevant to barriers and access to services. For quantitative studies, we sought to identify significant socioeconomic and cultural factors that predicted these barriers.

Results: Our search yielded 665 studies after duplicates were removed. 22 studies that met the inclusion criteria (fifteen qualitative and seven quantitative studies) were included in the final synthesis. The total sample consisted of 947 immigrant parents of children with IDD. Only one intervention study addressing barriers faced by immigrant families was found. Thematic analysis results based on qualitative studies suggest that language barriers, misinformation and the lack of information on IDD and service access, inadequate provision and coverage of health insurance, and the lack of care coordination in the service system are amongst the most salient barriers, as perceived by immigrant parents of children with IDD. Quantitative synthesis results suggest that barriers were associated with immigrant status, parents’ nativity, English language proficiency, child age, and availability and affordability of services.

Conclusion and Implications: To our knowledge, this scoping review is the first to systematically examine existing evidence on barriers and access to services among immigrant families of children with IDD. More culturally relevant intervention research is needed to address barriers faced by this population. Findings from this study also illustrate the importance of providing culturally competent, accessible, and affordable services to immigrant families in the US and Canada, given the rapid growth of immigrant population, and an increasingly hostile political atmosphere against them.