Medicine and Health Commons^™

Hearing The Patient Voice: Using Video Intervention/Prevention Assessment To Understand Teens With Cystic Fibrosis, Susan Horky Lscw, Laura E. Sherman Msw, Julie Polvinen, Michael Rich Md

Patient Experience Journal

This qualitative study asked two questions: 1) How do teens with cystic fibrosis (CF) feel about their treatments; and 2) What factors lead teens to adhere, or not adhere, to treatments. To answer these questions we used an innovative approach (Video Intervention/Prevention Assessment or VIA), to learn about the experiences of teens with CF. We loaned video camcorders to teens with CF and asked them to create visual narratives of their lives. Researchers logged and coded videotapes, identifying themes that arose from the material. A primary theme was “Doctors don’t understand.” Participants also highlighted the value of routines and parental …