Trends in Well-Being and Opportunities to Support Caregivers of Individuals With Fetal Alcohol Spectrum Disorder Across the Lifespan.

BACKGROUND

Caregivers of individuals with fetal alcohol spectrum disorder (FASD) experience unique challenges, stressors, and strengths, and there is growing understanding of the needs of these caregivers. However, less is known about how the broader caregiver context, including sociodemographic and ecological factors, may be associated with well-being.

METHODS

Data for this study were collected between 2021 and 2025, gathered at baseline as part of an ongoing international longitudinal survey about caregiver experiences and perspectives of raising people with FASD (N = 234). Information on sociodemographic factors, family characteristics, and caregiver well-being was analyzed.

RESULTS

Participants predominantly identified as women (95%) and had a mean age of 54 years (range 26-82); most (69%) were adoptive caregivers of children and adults with FASD and 67% were living in Canada. Family structure and composition varied across participants, and many caregivers reported financial challenges. Overall, caregivers reported high levels of stress and limited social support, along with strengths in their relationships with spouses/partners and relatives. Self-reported well-being was highest among parents who were retired, did not experience employment disruptions because of parenting responsibilities, cared for adults (as opposed to young children) with FASD, and had only one (as opposed to multiple) dependent(s) with FASD.

CONCLUSIONS

This study provides insight into broad contextual factors (i.e., employment status, life stage) that may influence well-being among caregivers of people with FASD. Understanding these factors can lead to more tailored and effective responses, interventions, and policies that support stability and thriving among caregivers, families, and communities of people with FASD.