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

BACKGROUND: Adults with fetal alcohol spectrum disorder (FASD) can thrive with lifelong support in daily living activities. Previous research examining living support for adults with FASD has heavily relied on caregiver reports rather than lived experiences, which can undermine opportunities for self-determination. In this study, we examined the perspectives of adults with FASD to better understand: (1) the ways in which they are supported with daily life activities; and (2) their ideal future living arrangements and supports. METHODS: This article presents findings from the perspective of adults with FASD as part of a broader project involving both adults with FASD and the caregivers who support them. Interviews were conducted with four Canadian adults with FASD who live in housing with supportive services and seven adults with FASD who live at home with the support of caregivers. Framework analyses, a structured approach to analyzing qualitative data, were used to examine participants' perspectives. RESULTS: In addition to providing support for previous findings, participants provided novel information regarding: (1) their daily living supports; (2) positive and negative aspects of their arrangements; and (3) ideal living environments and supports. CONCLUSIONS: This study offers insight into participants' perspectives regarding their living support, which is critical to inform housing and aid in self-determination. Areas of support outlined by participants can be used to begin conversations regarding the support required in housing arrangements for adults with FASD.

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

BACKGROUND: Caregivers 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. METHODS: This 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. RESULTS: Caregivers 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. CONCLUSIONS: This 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.