Cincinnati Children’s is conducting a research study in partnership with the Spina Bifida Coalition of Cincinnati to learn more about the difficulties and supports that impact individuals with spina bifida who are transitioning from pediatric to adult care.
Teens with spina bifida at least 14 years old, adults with spina bifida, and their caregivers may be eligible to participate.
If you agree to participate, you will be asked to complete some basic demographic surveys online.
Parents, teens, and young adults will also be asked to complete standardized questionnaires about:
- Their transition readiness
- Self-management skills
- Self-advocacy skills
- Quality of life
We will also ask you to be part of a focus group, which is a group of people who have some experiences in common, conducted by a member of the study team. The focus group will take about 60 to 90 minutes. It will be audio-recorded. It will take place in person at a hospital or community location, or virtually on a meeting platform called Zoom.
Participants will receive up to $30 to complete surveys and take part in a 90-minute in person or virtual focus group.
For more information on this study, contact Brittany Spicer at firstname.lastname@example.org.