11 Provider perspectives on FASD diagnostic practices

Abstract Background Fetal Alcohol Spectrum Disorder (FASD) is a diagnosis associated with complex, varied, and significant neurodevelopmental impairments. The clinical picture is frequently complicated by biopsychosocial and societal factors, as well as significant stigma. Furthermore, the referral and assessment process has historically been fraught with inequities, biases, and barriers to diagnosis, services, and supports. In Canada, FASD assessment often occurs through a time and resource intensive multidisciplinary assessment process. Objectives The purpose of our study is to better understand and document the experiences and unique challenges facing providers involved in FASD assessments, as well as collect proposed solutions to improve the process. Design/Methods Participants included clinicians involved in publicly funded FASD assessments in a Canadian provincial system, including developmental paediatricians, speech and language pathologists, psychologists, social workers, occupational therapists, nurse clinicians, case managers and general paediatricians. A total of 6 focus groups and 10 interviews (N=24) were conducted in April 2024 through July 2024. Seven participants also completed an anonymous follow-up survey which was included in the data analysis. The focus groups, interviews, and surveys explored clinicians’ experiences with the FASD diagnostic process, challenges they may face, approaches to cultural safety, and suggestions for improvement. Transcripts from the focus groups, interviews and surveys were analyzed using reflexive thematic analysis. This approach allows for engagement with the data while critically and transparently examining the perspectives and experiences that influence the knowledge generation process. Results Participants described the following: (1) finding the diagnostic label of FASD to be problematic, as many struggled with solely attributing a child’s developmental and behavioural challenges to prenatal alcohol exposure and worried about harm to birth mothers/families; (2) ethical dilemmas, such as confirming prenatal alcohol exposure and historical biases; (3) challenges and inconsistencies applying the Canadian diagnostic guidelines. Many clinicians expressed a desire to move towards a functional based approach to better describe and support complex children and youth with perinatal alcohol exposure. Conclusion Clinicians involved in FASD diagnostic assessments described feelings of frustration around the current diagnostic process and some hesitancy diagnosing children with FASD - pointing towards experiences of moral distress. There was considerable interest from participants to move toward a more function-based approach to diagnoses and recommendations for supports for children with prenatal alcohol exposure. Further studies are needed to examine the perspectives and lived experiences of youth and adults who have been diagnosed with FASD.