Caregiver Perspectives on Priorities and Barriers in Applied Behavior Analysis Service Delivery for Autistic Individuals: A Community-Engaged Sequential Mixed-Methods Study.

purposeWe conducted a community-engaged sequential mixed-methods study to identify the treatment and service delivery priorities and barriers that caregivers of autistic individuals experience when receiving applied behavior analysis (ABA) services.

methodsWe first conducted semi-structured interviews with eight caregivers to identify common priorities and barriers. Using the themes derived from the interviews, we collaborated with community partners to co-develop the Caregiver Priorities and Barriers Survey (CPBS) and administered it to a large sample of caregivers (N = 376) who had received ABA services. We analyzed the interviews using thematic analysis (Framework Method) and the surveys were analyzed using standard statistical methods.

resultsThere was significant concordance between the qualitative and quantitative analyses. Caregivers described prolonged waitlists, limited provider availability, and mixed experiences with telehealth. The most pressing priorities included minimizing delays in diagnostic evaluations, incorporating ABA more effectively in schools, and identifying appropriate telehealth models for their child. Families in rural areas reported greater barriers related to provider communication, medically necessary ABA delivered in the educational setting, disruptions on family life, and increasing their child's engagement in telehealth sessions.

conclusionThe findings reveal persistent inequities in access to ABA services and highlight opportunities to strengthen the behavioral health workforce, policy, and system-level coordination. Further refinement of existing telehealth models could help overcome common access barriers to ABA services for families.