Trends in Well‐Being and Opportunities to Support Caregivers of Individuals With Fetal Alcohol Spectrum Disorder Across the Lifespan
Source: PubMed Central Open Access, NCBI / U.S. National Library of Medicine
ABSTRACT 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. acer70363-sec-0001 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 (= 234). Information on sociodemographic factors, family characteristics, and caregiver well‐being was analyzed. acer70363-sec-0002 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. acer70363-sec-
Abstract
ABSTRACT 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. acer70363-sec-0001 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 (= 234). Information on sociodemographic factors, family characteristics, and caregiver well‐being was analyzed. acer70363-sec-0002 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. acer70363-sec-0003 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. acer70363-sec-0004 Caregivers of individuals with FASD report high levels of stress, with well‐being significantly influenced by factors like employment status and number of dependents. These findings emphasize the need for tailored interventions and policies that address specific sociodemographic contexts to better support caregiver stability and overall family thriving. graphical