Vehicles for Change: Conversation and Collaboration in Support of Children with Fetal Alcohol Spectrum Disorders

Abstract

Fetal Alcohol Spectrum Disorder (FASD) constitutes a highly complex and controversial public health concern among researchers, practitioners, policymakers, and public citizens and can lead to devastating cognitive, physical, and functional impairments (Chudley et al., 2005; Streissguth & O’Malley, 2000). Caused by maternal consumption of alcohol during pregnancy, this preventable developmental disability damages the brain and central nervous system in critical and lasting ways. The permanency of the condition creates serious educational, social, and societal implications, as those affected often require lifelong support and resources (Ospina & Dennett, 2013; Streissguth et al., 1994). Increased scientific and practical knowledge are necessary for the advancement of targeted supports and the establishment of effective evidence-based interventions (Gould, Job, St. Arnault, Pei, & Poth, 2012). To that end, 5 published manuscripts comprise this dissertation, reporting data from two large-scale research studies focused on FASD service delivery in Alberta, Canada (Poth & Pei, 2012). A multi-methods research design rooted in phenomenology and thematic analysis is presented as an appropriate and trustworthy means of accessing stakeholder experiences and highlighting key areas of strength and weakness in FASD programs and services. One hundred and seven participants serving affected children across five roles and three settings emphasized the necessity of collaboration and communication and detailed barriers to the development of positive working relationships and effective agency within each service domain: prevention, assessment, and intervention. This dissertation contributes to the academic literature elements of a collaborative, intentional, and reflective service delivery approach that has the strong potential for informing future policy, strategic planning, and programming. Implications for research and practice specific to the education, care, and advocacy of children and families affected by FASD are discussed.