Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder: Part II—Perspectives from caregivers

Abstract

BackgroundCaregivers supporting adults with fetal alcohol spectrum disorder (FASD) report concerns regarding living arrangements and services for their adult children with FASD. Best practices for living support for adults with FASD are under‐researched, and few studies have explored the experiences of caregivers whose children are adults. This study examined the perspectives of caregivers who support adults (18+) with FASD regarding: (1) current ways adults with FASD are supported with daily life activities; and (2) ideal future living arrangements and supports.MethodsThis article presents findings from the perspective of caregivers who support adults with FASD, as part of a broader project involving both adults with FASD and caregivers. Semi‐structured interviews were conducted with 11 Canadian caregivers who live at home with an adult with FASD (aged 18+). Responses were examined using framework analysis, a structured approach to analyzing qualitative data.ResultsCaregivers described their experiences and perspectives regarding: (1) current ways adults with FASD are supported in their daily activities; (2) strategies for successful support; (3) ideal future living arrangements and supports; and (4) concerns for the future. Notably, almost every participant raised pressing concerns regarding the future living arrangements for the person they support once they are no longer able to provide care.ConclusionsThis study explores caregivers' perspectives regarding living support needed by adults with FASD, which can inform support programs and housing services. Findings demonstrate an urgent need for policy change directed toward developing available, affordable, and appropriate housing for adults with FASD.

Current and ideal living arrangements and supports for Canadian adults with fetal alcohol spectrum disorder (FASD)—Part I: Perspectives from adults with FASD

“…To address these gaps, this article (Part I of II companion articles) highlights the perspectives of Canadian adults with FASD to better understand how they are currently being supported with daily living needs, and what supports would be needed in ideal future living arrangements. A second companion article reports findings related to caregivers' perspectives (Gault et al, 2024).…”

“…Findings from this study are in line with these recommendations and lend support to the importance of understanding FASD when developing supports for adults with FASD. Unfortunately, although the call to develop a spectrum of housing for adults with FASD in Canada has been consistently raised since Brownstone's report in 2005, the provision of available housing with appropriate supportive services in Canada remains a pressing area of concern (for more on this issue from the perspectives of caregivers, see Part II of this research-Gault et al, 2024).…”