It’s now been a full two years since we launched the CARE Study (Caregiver Approaches, Resiliencies and Experiences Raising Individuals with FASD)! We continue to learn so much from the stories shared with us by caregivers from all over the world.
As of September this year, we’ve had about 225 caregivers initiate the survey, and more than 100 complete it the full way through. Most (66%) of these caregivers reside in Canada, but we are also hearing perspectives from the US, Australia, New Zealand, and other countries in Central America and Europe. The vast majority (93%) of caregivers identify as women, and most (56%) are adoptive parents.
This fall, we chose to focus our biannual project update on caregiver hopes and needs for the future. We thought this would be a good topic to build on the growing momentum in FASD research that’s strengths-based and really applicable to individuals and families.
Excitement and Hope
We asked caregivers a few open-ended questions to learn more about what excites and gives them hope for the future. Analysing their responses, we identified a few themes in this area, including societal shifts that allow for more supportive environments, resources, services, and opportunities for their children to reach their potential. Caregivers also talked about growth and learning that they experience for themselves and also see in their children with FASD. Strong relationships and connections were also described as being valuable sources of hope:
“She is growing up in a home where she is loved beyond measure… [we] will always stand up for her.”
Worries About the Future
Caregiver also shared their thoughts on what worries them about the future for their individuals with FASD. One of the biggest worries we identified centered on what will happen when the caregiver is no longer around; what services will support individuals with FASD to be interdependent through their transitional to adulthood and beyond. Many caregivers worried about their children’s vulnerability to experiencing adverse outcomes in the future, such as unsafe housing, financial insecurity, and challenges with mental health and additions. They expressed concerns with gaps in resources and barriers they have faced in accessing needed supports and services for their families:
“[I worry about] his ability to find and maintain employment. His ability to be a supportive partner in a romantic relationship. Who will take over his caregiving tasks when I’m no longer able to?”
Ways to Support Success
Importantly, caregivers described several things they would need to ensure the future is as successful as possible. These included continued change at the systems level which would lead to improved services and practical supports for people with FASD. Caregivers often spoke about their need for more respect, recognition, and support from service providers and broader society to prevent burnout and pave the way for healthy outcomes for both individuals with FASD and their caregivers:
“Social supports/programs for adults living with FASD. Often, the challenges these individuals face are invisible/hidden, and it is difficult to convince programs that support is truly needed.”
Despite these worries and needs, caregivers shared many stories of growth, connection, and hope that should be celebrated and leveraged to continue supporting healthy outcomes.
Here are some resources that may be helpful for caregivers:
- Supporting caregivers through ACT (webinar)
- Caring for adults with FASD (webinar
- A new mental health resource and practice guide (toolkit)
- An issue paper on framing FASD through the lens of the UNCRPD