Overview

"When have you felt trusted by your health care team? How have the modulator therapies affected your experience with CF? How has CF affected you financially?"

These questions, and many more, formed the basis of a 2023–2025 study designed to help us understand the health and care experiences of people with cystic fibrosis (CF). We especially tried to understand the experiences of people who have been underrepresented in other studies. You'll see a sampling of these narratives on this site.

                              

The goal of this pilot is to share audio-video montages about five topics relevant to a changing CF care landscape. In a full module or catalyst film, we would share additional experiences adults and parents of children with CF have had navigating their healthcare and day to day lives.

Why Did People Participate? Participants were motivated to share their stories to increase representation of diverse voices and to describe their physical and mental health experiences. They also wanted to share their stories to support others with CF, family, friends, and clinicians in better caring for people with CF.

Explore Topics on this Site:

                                               

How to Use the Videos: People in the study were eager to share their stories to help others. We encourage you to show and share them in order to: 

• Improve clinical practice and education 
• Increase understanding and reduce isolation among people facing chronic illness, and their families and friends 
• Inspire additional research about trust and healthcare experiences, including projects focused on people who are often underrepresented