Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review

Abstract

Families of autistic children from underserved populations participate in support services at lower rates than other families. To better understand possible reasons for this inequity, we reviewed qualitative studies examining parent-reported barriers and facilitators to accessing and participating in support services. A systematic search identified 18 articles that met inclusion criteria. Resulting thematic analysis located three themes: (a) support service accessibility, (b) diversity of support services, and (c) community. Parents reported that financial pressures, geographic location, and service flexibility influenced their ability to obtain support services. Implications for service delivery and areas for future research are discussed. Lay abstract Families from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery.

Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry

“…In addition, caregivers from non‐CALD backgrounds were over three times as likely to report difficulties in accessing NDIS services, and were more likely to report lack of knowledge as a barrier to accessing interventions, compared to CALD caregivers. While counter‐intuitive at face value, given that some literature suggests families from CALD backgrounds experience difficulties accessing support services (Wallace‐Watkin et al, 2022), this finding aligns with our recent research investigating predictors of diagnostic delay, where children from CALD backgrounds received diagnoses earlier than those from non‐CALD backgrounds (Boulton, Hodge, et al, 2023). Indeed, it is possible that the CALD caregivers in this cohort are well‐versed in navigating various governmental access systems, and may have be better educated and equipped to navigate some of the bureaucratic hurdles that can be associated with the NDIS, relative to their non‐CALD counterparts.…”

“…Furthermore, caregivers who reported a lack of knowledge about where to go and who to contact as a barrier to accessing interventions were more likely to have lower levels of education and live in geographically disadvantaged areas. These findings align with prior work evaluating barriers to accessing interventions post‐diagnostic assessment, where socioeconomic status consistently emerges as a key access barrier (Wallace‐Watkin et al, 2022, 2023). Taken together, these findings suggest that socioeconomic status is an important driver of difficulties in accessing interventions while families wait for a developmental assessment.…”

“…The most commonly reported barriers were long waitlists, financial considerations, and a lack of knowledge about where to go or who to contact. This mirrors international findings, where long waitlists have been reported as significant barriers when attempting to access specialist services (Stahmer et al, 2019; Wallace‐Watkin et al, 2022). Caregivers also commonly report insufficient knowledge about where to go and how to access support services (Vohra et al, 2014).…”

“…Decades of research have shown vast disparities in accessing healthcare services for vulnerable families. For example, children from culturally and linguistically diverse (CALD) backgrounds and low socioeconomic backgrounds may experience more barriers in accessing supports and report a lack of knowledge in how to access supports post-diagnostic assessment (see Wallace-Watkin et al (2022)). Further, there is an increasing acknowledgement of the community, social, and economic costs associated with neurodevelopmental conditions, which extend well beyond the child and family unit.…”

Parent reported barriers and facilitators to support services for autistic children in Aotearoa New Zealand

“…Survey development. The survey used in this study was based on the results of a qualitative systematic literature review (Wallace-Watkin et al, 2023). This review, conducted collectively by the authors, examined parent reported barriers and facilitators for accessing and/or participating in support services for autistic children from underserved families.…”