About the CARE Study
FASD is a complex disability. Caring for someone who has FASD comes with unique challenges and successes. Unfortunately, there has not been much research to understand the whole experience of caring for someone with FASD across the lifespan. This study will help researchers learn about the lived experiences of people who care for someone with FASD. The specific goals of this research are to:
- Learn about the unique experiences, concerns, strengths, and successes of someone who takes care of a person with FASD
- Understand more about individuals with FASD through the eyes of their caregivers
This is an ongoing research study created in partnership with CanFASD Researchers and the Family Advisory Committee. It collects information from parents and caregivers around the world who are caring for individuals with FASD to inform future resources and supports.
Research Findings
The research team publishes bi-annual updates for this study. Updates are listed below:
- (Spring-Summer 2025) Family Relationships and Stability
- (Fall 2024) What Caregivers Want to Know
- (Spring 2024) Perspectives on Life Transitions
- (Fall 2023) Hope, Worries, and Needs for the Future
- (Spring 2023) Trends in Alcohol and Substance Use
- (Fall 2022) Project Update: Back to School Edition
- (Spring 2022) Project Update Experiences and Perspectives of Caregivers of Individuals with FASD
Research Publications
Caregiver approaches, resiliencies, and experiences raising individuals with fetal alcohol spectrum disorder: A study protocol paper (open access)
PLoS ONE, December 2024
Resources
Self Care Strategies: For Caregivers of People with FASD
Published October 2025
Caregivers of people with FASD can experience high levels of stress. This can influence their health and wellbeing, which then in turn can impact their relationships with their children and families. This resource provides a list of potential self-care activities to support caregiver health and wellness. These strategies were compiled as part of the CARE Study and have been adapted for download.
Join the Project
We are looking for caregivers to complete a two-hour survey about your experiences caring for someone with FASD. Participate in the study here.
Partners: University of Alberta and Canada FASD Research Network
REB: PRO00109341