The Kids Brain Health Network recently posted an article on the value of engaging parents of children with disabilities in the research process. The article highlights how these types of partnerships help us to “learn with each other, about each other, and from each other” and make more meaningful impacts on the lives of children and families.
Here at CanFASD, we recognize the importance of understanding the lived experiences of families of individuals with FASD. In 2013, the CanFASD Family Advisory Committee (FAC) was formed to bridge the gaps between FASD researchers, service providers, and those with lived experience. The mission of the FAC is to:
- Advise on research priorities for families impacted by FASD
- Assist in translating results of research to ensure they are accessible to families
The FAC is comprised of 10 committed parents and caregivers of individuals with FASD interested in how FASD research can improve the quality of life for individuals with FASD and their caregivers. Members are selected from across Canada based on their broad range of personal and professional experience in the field of supporting individuals with FASD.
One example of the strength gained by researchers, service providers, individuals with FASD, and their families working collaboratively is the 2016 workshop FASD Research: Learning Together hosted in partnership by the FAC and CanFASD. The goals of this event were to share and discuss new knowledge related to FASD and engage in multi-directional conversation to identify issues that may guide future research directions. Four important themes emerged from this event: 1) FASD as a whole-body disorder, 2) aging and transitions, 3) strategies and supports, and 4) advocating for supports, which shed light on the lived experiences and research priorities for individuals with FASD and their families.
For more information about this event, visit the CanFASD Learning Together page here.
The FAC recently shared a video of their perspectives on why FASD research matters to them:
I really like the ““learn with each other, about each other, and from each other” concept in patient and family engagement. Glad to see FASD research is also enhanced by patient and family input.