Parent and Provider Perspectives on Family Navigation for Early Identification of Children With Autism Spectrum Disorder

Abstract

Early intervention (EI) can improve developmental outcomes among children with autism spectrum disorder (ASD), but underdiagnosis and undertreatment are common among low-income families and children of racial/ethnic minorities. The Screening and Linkage to Services for Autism (SaLSA) trial (ClinicalTrials.gov Identifier: NCT02374541) demonstrated that autism family navigation (AFN) improved the likelihood that young children at risk for ASD completed a diagnostic evaluation. In a qualitative descriptive U.S. study, we recruited parent participants, health care and EI providers and staff, and project personnel from the SaLSA trial to participate in semi-structured interviews on acceptability and feasibility of AFN services for families seen in urban safety-net clinical settings (i.e., where care is provided regardless of ability to pay). Iterative theme analysis was performed. A community focus group was conducted for triangulation to improve validity. Results demonstrated four main themes: (1) “It’s all in a name: the risk of engagement”; (2) “Community partnerships require authentic trust”; (3) “System interactions and interrelationships”; and (4) “What is an autism family navigator: family navigation or clinical role?” This study adds perspectives of interested parties of AFN within an urban underserved population. Recommendations for navigation program content and delivery can inform future modifications to AFN programs in the context of the communities they serve.