Engaging Under-Resourced Parents of Children with ASD in Service Uptake: Using Qualitative Research to Inform Interventions

Background:  Ethnically diverse children of low socioeconomic status and from non-English speaking households may receive an ASD diagnosis up to two years later than their white counterparts (Mandell et al., 2009; Valicenti-McDermott et al., 2012). Parent engagement interventions effectively support timely service access. Yet many interventions are developed and tested with White, high-resourced families and may not translate in practice with under-resourced communities. Gathering input from under-resourced communities during intervention development can help address these gaps in ASD diagnosis and treatment.

Objectives:  Gather qualitative data from under-resourced families and their service providers for the purposes of identifying barriers, supports, and needs in seeking an ASD diagnosis and services. Utilize these data to inform a new intervention, designed to facilitate parent engagement in autism-specific services in under-resourced populations.

Methods: 19 Focus groups and 17 interviews were conducted in urban and rural neighborhoods of Philadelphia, Rochester, Los Angeles, and Sacramento with 105 parents and 125 providers. Caregivers had a child (2-8 years old) within 3 years of an ASD diagnosis, and received supplemental governmental assistance. Providers worked with families that met the above criteria.

Participants answered questions about barriers and facilitators to accessing evaluations and autism-specific services. We solicited recommendations for an intervention to address these issues in under-resourced families. Data were analyzed using open coding and then thematic analysis. Cross-site coding ensured interrater reliability and consensus across sites.

Results:  Major themes that emerged included: (1) the contribution of cultural differences (including language, SES, and rurality); (2) systemic/family barriers (e.g., long waitlists, cultural stigma) to diagnostic and service disparities; and (3) supports, including agencies, practices and people (e.g., family members).

Recommendations included: (1) a parent “coach” immediately following diagnosis to help the family navigate the service system; (2) multiple methods of contacting caregivers (e.g., texting, online resources, outreach at community events); (3) flexible scheduling for parent workshops; (4) caregiver education on ASD; and (5) improving communication between professionals and families.

Conclusions:  Results demonstrate consistency across sites, despite varying systems at state and district levels. This consistency exhibits the widespread need for a parent engagement intervention that supports under-resourced families in service uptake.

Findings will be used to develop a community-informed intervention that will be tested via RCT (N = 120) with caregivers of newly-diagnosed children from under-resourced backgrounds. Participants will be randomly assigned to either (1) a culturally matched peer parent coaching condition (including online and group trainings), (2) parent coaching condition with added provider consultation plus trainings, (3) a control condition of access to information only. Results from the RCT will be available in 2019 and will fill gaps in current evidence-based treatments that are not traditionally culturally sensitive, easily accessible, or tested with diverse populations. Continuing our community partnership will also increase the recruitment of underserved families in intervention studies.