Quality of life for Alaskan individuals with FASD and their families

Abstract

Fetal alcohol spectrum disorder (FASD) is a lifelong disability caused by prenatal exposure to alcohol. The effects of FASD include a range of physical, mental, behavioral, and learning disabilities. These disabilities impact quality of life, not only for the affected individual, but for family members. The effects from FASD ripple into schools, the correctional system, and throughout rural and urban communities. Although there are no reliable statistics available on FASD in Alaska, many professionals in the field believe Alaska to have the highest rate of FASD in the United States. This research has explored the ways in which prenatal exposure to alcohol affects quality of life for Alaskan individuals and their families. For this study, I have defined quality of life as the multi-faceted evaluation of the individual's personal experiences and life satisfaction, including health, psychological and social indicators. Since the identification of fetal alcohol syndrome (FAS) and FASD, many studies have analyzed the effects of prenatal alcohol exposure, as well as possible interventions. Few studies have investigated how prenatal alcohol exposure affects the individual's quality of life and even fewer studies have analyzed how raising one or more children with FASD affects the family. To address the gap in the literature, this research applied social constructivist theory and employed a qualitative design, using semi-structured interviews to explore individuals' and parents' life stories and perceptions on how FASD has affected their lives. I interviewed eight individuals with FASD and 14 adoptive or long-term foster parents. Findings indicate that FASD impacts almost every facet of the lives of both the individuals affected and their families. All individuals with FASD interviewed for this project suffered serious adverse childhood experiences in addition to their prenatal exposure to alcohol. All encountered academic and social difficulties at school. Individuals struggled in their transitions to adulthood, with some individuals needing assistance from parents or social services throughout their lifespan. Parents expressed their ongoing need for structure within the home and the continual need to advocate for suitable services for their children. They described how the ongoing stress of raising their child(ren) with FASD affected their social lives, employment and even their marriages. The perspectives and insight of these individuals with FASD and their parents can provide other family members, service providers and legislators a better understanding of how FASD affects quality of life and assist decision makers in making informed choices on how to best provide expanded or improved supportive services to these individuals and families whose everyday struggles go largely unrecognized by the general public.