Experiences and Perspectives of Individuals with Cystic Fibrosis and Their Families Related to Food Insecurity

Food insecurity (FI) rates among people with cystic fibrosis (CF) are significantly higher than in the general US population. This study explored the experiences and perceptions of adults and parents of children with CF surrounding FI. We recruited parents of children with CF ages 0-18 years and adults with CF ages 18 years and older from a large, accredited U.S. CF care center and the Cystic Fibrosis Foundation Community Voice to participate in a qualitative study using semi-structured telephone interviews to explore experiences and preferences related to food insecurity. Two coders independently reviewed each transcript to apply the codebook and identify any emerging codes using an ongoing, iterative process to identify central themes. We interviewed 20 participants (six adults with CF and 14 parents of children with CF) and identified five major themes: (1) FI in CF is influenced by a variety of factors, ranging from nutritional demands to competing financial barriers; (2) FI impacts CF health outcomes; (3) Open patient-provider communication around FI is vital; (4) FI screening and discussions should be normalized in CF care; (5) Comprehensive FI resources are vital. FI is an important topic that should routinely be addressed with the CF care team to destigmatize and encourage individuals to be more forthcoming about their FI status. Results from this study will inform future larger investigations on the impact of FI on CF health and aid in the design and planning of targeted interventions and advocacy efforts.