In this project, adolescents with cystic fibrosis (CF) discuss their experiences with their disease and treatment regimen through the creation and sharing of illness and self-management video portraits.
Each video assignment will ask teens to:
- Show and tell how they handle some key aspect of self-management (e.g., taking enzymes at school)
- Explore how they handle key self-management skills
- Develop a short narrative reflection on the impact that self-management issues have on their quality of life, goals for the future, and relationship with their parents.
The expected results:
- The narrative analysis of the video portraits and the qualitative analysis of the participants’ online sessions and exit interviews will produce new knowledge about the burdens of self-management and the opportunities for successful self-management.
- This study will provide evidence for a potential breakthrough in existing theories of self-management and a new practical approach to self-management for young people with CF.
[This project is inactive but is presented here for archival purposes.]
Director: Walter Robinson, MD
Funders: U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Child Health and Human Development