Memorial University of Newfoundland
Fetal Alcohol Spectrum Disorder: An Institutional Ethnography Examining Communication Pathways Between Multidisciplinary Support Systems and Diagnosed Pre-Adolescent Youth
This study on FASD used institutional ethnography (IE) to examine how supports and services are coordinated for children/youth with an fetal alcohol spectrum disorder (FASD) diagnosis and their caregivers/parents. IE, as a method of inquiry, was used to document peoples’ everyday lived experiences; analyze a wide range of texts (such as intake forms, policies, training manuals); and observe environments to explicate how everyday lives are (un)intentionally coordinated by institutions. This community-based research study examines a comprehensive network of supports and services for individuals and families with FASD diagnoses to determine how information is communicated, coordinated and regulated. Caregivers/parents of youth ages 9-14 with an FASD diagnoses were interviewed as the initial focus and point of entry. Then, front line workers who have direct involvement with the family in health, child welfare, education, social services and community organizations were interviewed. Third, medical specialists, decision and policy makers were interviewed. And all throughout, text-based documents that guided, informed or coordinated how individuals, communities and institutions respond to an FASD diagnosis were collected and analyzed. The results from this research study “make visible” and map the kinds of “work” that is involved by individuals, families, institutions and community supports alike.
Keywords: fetal alcohol spectrum disorder (FASD), institution, supports, services, community-based
Time Frame: September 2010 – December 2014
|Researcher: Melody Morton-Ninomiya|
|Funded by: CIHR, Research & Development Corporation, Memorial University, Northern Scientific Training Program|