Who can participate?
Teens with spina bifida at least 14 years old, adults with spina bifida, and their caregivers may be eligible to participate.
What will happen in the study?
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.
You will be given a consent form that thoroughly explains all of the details of the study. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.
Will you/your child be paid to be in this research study?
Participants will receive up to $30 to complete surveys and take part in a 90-minute in person or virtual focus group.