Fetal Alcohol Spectrum Disorders and Challenges Faced by Caregivers: Clinicians' Perspectives

摘要

Background There is a notable absence of evidence based early interventions for young children with FASD. Objective This study examines clinicians’ perspectives regarding the needs of caregivers of children with FASD and how such perspectives informed the development of a family-centered early intervention for young children with prenatal alcohol exposure. Method 19 professionals who work with children with prenatal alcohol exposure and / or in out-of-home care were recruited to participate in focus groups. The facilitator used a semi-structured topic guide to elicit feedback from participants. These data were transcribed, coded, and categorized to reflect themes in a manner informed by a grounded theory approach. A second investigator repeated the process. Codes were chosen and assigned to data by consensus. Results The coded data yielded five distinct perceived challenges faced by caregivers: (1) seeking and possibly receiving a diagnosis; (2) processing emotions and coming to terms with the child’s difficulties; (3) seeking support and belonging within a knowledgeable community; (4) developing a new understanding of the child’s behavior; and (5) becoming an educator, advocate, and expert on the child and FASD. Conclusion Professionals believe specific capacities are essential insofar as the human service systems that caregivers engage are perceived to be under-equipped to respond to the distinct set of challenges faced by children with FASD and their families. Findings are discussed in terms of how the proposed intervention was designed to address such challenges and to cultivate those key capacities in order for families to meet their children’s needs.