We have now been running the C.A.R.E. Study: Caregiver Approaches, Resiliencies, and Experiences Raising Individuals with FASD for over one and a half years. We’ve received over 200 responses since the survey launched in September 2021.
The team sends out updates from the research two times a year. As April was Alcohol Awareness Month, they thought this would be a great opportunity to look at the data on trends in alcohol and substance use in caregivers and people with FASD.
Large majority of responses are from women
As in previous updates, most of the people who have responded to this survey are women (95%). The average caregiver age is 54 years old, but participants range from 25 to 78 years old. The majority of caregivers are adoptive parents (58%). Biological parents make up 17% of the responses. Most people in this survey are from Canada, but other countries like the U.S. and Australia are also represented.
Substance use among caregivers of individuals with FASD
Problematic substance use rates in caregivers is generally comparable to that of the general population (but these are estimates and can vary widely). Approximately 8% of caregivers report using alcohol and other substances to cope. Importantly, almost half of those using substances to cope reported that it is not a helpful coping strategy.
More helpful coping strategies reported included:
- Talking about and expressing feelings;
- Movement (i.e., exercise and physical activity); and
- Spiritual practice
Substance use in individuals with FASD
Caregivers were also asked to report on substance use among their dependants. Of those who answered these questions, 28% said that a loved one with FASD in their care has struggled with substance use. On average, this substance use started at 15 years old. The vast majority of individuals with FASD who are reflected in these responded used more than one substance, the most common being cannabis (80%), alcohol (73%), and tobacco (47%).
Caregivers also shared words of hope for the future and for others who are experiencing similar concerns:
- “Both my children, despite their addictions are still alive. As long as they are alive, there is hope things will change for the better.”
- “I think I understand my son well and know how to talk to him. I’m comforted that he’s made it to twenty without any addictions.”
Need for improved resources and supports
Over and over, research highlights the need for improved supports and services to help those with FASD who are using substances. This survey is no exception. Caregivers in our study reported low levels of satisfaction with the supports they received to navigate systems and resources; their access to adequate treatment and support; and the medical system’s ability to address the substance use needs of their loved ones with FASD. These are areas we can point to for improved care.
We are also working on a research project to improve substance use treatment for those with FASD. One outcome of this project is our newly released course, Substance Use Treatment and FASD. This online training program is designed to help addictions professionals and others supporting someone with FASD through substance use. It will give you a better understanding of the brain-based differences that people with FASD experience, how they can impact success in traditional treatment programs, and new treatment approaches that are better suited to the unique neurodevelopmental needs of those with FASD. We are currently recruiting for a new phase of this project, focusing on youth substance use.
Here are some other resources to help support individuals with FASD and substance use:
- Moving Towards FASD-Informed Care in Substance Use Treatment
- Addiction and Mental Health Care: Resources to Support Collaboration
- FASD and Mental Health & Addictions: Pathways to Care
- Substance Use Treatment in FASD Populations (webinar)
Become a member of CanFASD to learn more and stay up to date with FASD research in Canada!