We have some exciting developments to share from our team working on the Caregiver Approaches, Resiliencies, and Experiences (CARE) Study!
The CARE study is an international online survey created collaboratively with various research partners and caregivers of people with FASD. The study aims to teach us more about the unique experiences, concerns, strengths, and successes of caregivers and families. This survey is very comprehensive, but because there is always more to learn, we asked participants:
“What are some of the challenges, successes, or experiences important to you that we didn’t cover in this survey?”
What caregivers told us
So far, 79 caregivers have shared ideas for areas they’d like to know more about. Here is what we’ve heard:
- There are problematic gaps in existing systems (health care, education, justice) that need to be addressed to help families from falling through the gaps.
- We need to do a better job of integrating FASD-informed support and prioritizing the perspectives of caregivers and families.
- More understanding is needed around certain family dynamics, such as sibling relationships, co-parenting, and connection between birth and adoptive families.
- We need to know more about how needs, identity, and relationships change throughout life for people with FASD as they age, and how this impacts caregivers.
- Finally, there is more work to be done to promote wellbeing, hope, and resilience among caregivers of people with FASD.
If you want to read more about these emerging caregiver priorities, you can find the full study update and infographic.
New paper
Another exciting update is that we recently published our first academic paper on the CARE study in the journal PLoS ONE. We wrote it to share why and how we are conducting this research and the expected impacts of our study. Hopefully this research can help inform other groups who are interested in doing similar work.
In addition to research papers, we also publish updates about the survey results twice a year. You can find all the updates on our website!
Still recruiting!
We are still looking for participants to complete CARE Study 1.0! We intend to keep this study open indefinitely to continue gathering information and sharing perspectives from a growing number of caregivers from diverse areas and backgrounds. If you haven’t participated yet, or know someone who would like to, this link will take you right to survey. Please feel free to share!
New survey coming soon: CARE 2.0
In the coming weeks we will be launching a follow-up survey for caregivers who participated in the original CARE Study. We’ve developed another round of questions to help us understand if and how caregiver experiences and needs have changed over time. We’ve also added some new questions reflecting what we’re learning from ongoing research. Additionally, we included questions to address topics that caregivers have identified as priorities.
If you completed the first CARE survey, keep an eye on your inbox for an invitation to participate!
As always, we are so grateful for the perspectives that caregivers have shared with us so far. Our hope is that these important stories will help to advance FASD research, practice, and policy and support healthy outcomes for people with FASD and their families.