The chronic stress burden on parents and guardians raising individuals with neurodevelopmental disabilities is a largely underexamined public health concern. For caregivers of those with fetal alcohol spectrum disorder — a condition affecting brain development with lifelong functional consequences — the stress profile is particularly acute, shaped by financial strain, social isolation, and a caregiving relationship that rarely resolves. Understanding which contextual factors modulate caregiver well-being could inform more targeted support systems.
This international longitudinal survey, drawing on baseline data from 234 caregivers collected between 2021 and 2025, mapped the sociodemographic and ecological predictors of well-being in a population that was predominantly female (95%), middle-aged (mean age 54), and largely adoptive (69%). A majority were based in Canada. Several factors emerged as meaningful predictors: caregivers who were retired, whose employment had not been disrupted by caregiving responsibilities, who were supporting adults rather than young children with FASD, and who cared for a single dependent rather than multiple individuals with FASD all reported meaningfully higher self-rated well-being. Conversely, financial hardship and limited social networks were broadly associated with lower well-being across the cohort, while spousal and familial relationships were cited as relative strengths.
This study adds granularity to a sparse literature. FASD affects an estimated 1–5% of the population in many Western countries, yet caregiver research has lagged far behind comparable work on autism or intellectual disability caregiving. The finding that caring for adults — rather than young children — is associated with better caregiver well-being is counterintuitive and worth interrogating: it may reflect survivor selection bias, adaptation over time, or reduced intensity of direct care demands. The predominantly adoptive, predominantly Canadian sample limits generalizability considerably. As an observational baseline analysis, causal inference is not possible. Still, the employment disruption finding has immediate policy relevance, pointing toward flexible work accommodations as a potentially modifiable lever for improving caregiver health outcomes.
