Clinician and Caregiver Perceptions of the Fetal Alcohol Spectrum Disorder Diagnostic Journey: A Qualitative Study

BackgroundAlcohol consumption and binge drinking during pregnancy have been rising in the US since 2006. Unfortunately, capacity to diagnose fetal alcohol spectrum disorder (FASD) remains suboptimal. Incorporating the lived experiences of affected populations improves service access and responsiveness, and enhances quality of care. This qualitative study thus explored barriers and facilitators in the FASD diagnostic journey from the perspectives of caregivers of children diagnosed with FASD and clinicians engaged in screening, evaluating, or diagnosing FASD or linking children to needed interventions. MethodsCaregivers were biological, adoptive, foster, or other guardians of children recently diagnosed with FASD at a large teaching hospital system serving a major southeastern metropolitan area. Clinicians were providers at this same hospital system who screened, evaluated, or diagnosed children with FASD or linked them to needed interventions. Study staff conducted semi-structured qualitative interviews with participants that covered barriers and facilitators arising during this diagnostic journey. Thematic analysis methods were applied to identify patterns across transcripts. ResultsEleven clinicians and 15 caregivers participated. Clinicians and caregivers reported that barriers to FASD evaluation and diagnosis included (1) cost; (2) wait times; and (3) prenatal alcohol exposure documentation, often shaped by stigma; no facilitators were identified. Facilitators to linkage to interventions were caregiver education on FASD symptoms, services to address these symptoms, and how to connect to these services. Barriers were absence of needed services, long travel distances to existing services, and cost. ConclusionsIn this sample, stigma, cost, and provider availability impeded the FASD diagnostic journey and linkage to care. Promising proposed federal legislation (i.e., the FASD Respect Act) targets these barriers, and thus holds potential to support evaluation, diagnoses, and linkage to care among children with FASD.