The Family CIRCLE study strives to actively engage people who know the most about living with a child with a special healthcare condition by including lived experience partners as part of our research team.
What is a Lived Experience Partner?
- A family caregiver for a child with a special healthcare need and/or a person who has a special healthcare need
- Someone who partners with researchers in every aspect of the research process – not just as the subject of research
Why do we believe Lived Experience Partners are important?
- Your first-hand experience has made you an expert at navigating parts of the healthcare system that are important to you and your child.
- You have expertise and insight into how our systems really work, as opposed to how they were designed to work.
- Your participation in every aspect of our research process is valuable and helps us do research that is most helpful.
Why are we doing this project?
- The goal of this project is to create a new research partnership with families of children with special health care needs all over the country. Many researchers don’t have these experiences, so we sometimes miss the mark with our research.
- By partnering, we hope researchers and Lived Experience Partners will:
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- Learn from patients and families about their needs, and how those needs change as their child’s health changes over time;
- Figure out ways to improve care;
- Work together to create better research questions that result in improved care for families;
- Link patients and families to exciting and important research that is happening all over the country.
- Share research results and other resources with participating families so that they can gain knowledge and connections that may help them with their own children’s care.
How will the project work?
- This project study will include asking about 900 families to join a newly formed cohort – or group of patients and families – who will participate in research over at least 2 years.
- The families have children with special healthcare needs who get health care in California, Utah, Texas, Wisconsin, Illinois, Ohio, Kansas, and Massachusetts.
- During the families’ time in the cohort, we will ask them about topics like:
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- the pandemic and school safety,
- their experiences accessing good quality in-home health services for their child (if applicable), and
- how they feel about providing care for their child.
- We’re also going to look at children’s medical records data to understand how their medical care use relates to their families’ experiences of their care.
Why are Lived Experience Partners so important for this particular study?
- We think it is critically important to have your input into what questions we should ask families to understand their experiences with their children’s care.
- We need your ideas and guidance about how to best engage families while they are in the cohort. For example, how can we make the experience engaging, meaningful, and useful to them.
- For this study, Lived Experience Partners have the opportunity to:
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- Make an impact on research to support children and youth with special health care needs and their families
- Work on a national research study and meet other Lived Experience Partners and researchers around the USA
- Learn more about research and attend trainings
What could I be asked to do as a Lived Experience Partners for this project?
- Contribute 2-3 hours per month, depending on interest and involvement in various activities
- Attend meetings and advisory groups with researchers and give feedback based on your experiences
- Share ideas about what should be researched and how
- Help understand what the study has found and what it means for families
- Work as part of the research team to share study findings
- Attend trainings and learn about research (required)