In this project adolescents with cystic fibrosis (CF) will 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 (such as setting goals and milestones), and develop a short narrative reflection on the impact self-management issues has on their quality of life, goals for the future, and relationship with their parents. Adolescents will share these portraits and reflect on their significance together through monthly online virtual meetings. Special online sessions will also be developed for parents. Narrative analysis of the video portraits as well as qualitative analysis (of the online sessions and exit interviews with participants) will produce new knowledge about the burdens, barriers, and opportunities for successful self-management of this pediatric chronic illness. 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.
Director: Walter Robinson, MD
Duration: 2007–2008
Funders: U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Child Health and Human Development