"I eat chocolate milk for dinner because we just have nothing in our fridge": The invisible burden and dire consequences of food insecurity for people with cystic fibrosis in the United States.

Abstract

Background: One-third of people with cystic fibrosis (pwCF) are food insecure, with profound negative implications for their health. This qualitative study explored lived experiences with food insecurity among pwCF or their caregivers and summarized their perspectives on food insecurity screening in the cystic fibrosis (CF) programs where they receive care.

Methods: Semi-structured qualitative interviews were conducted with two groups: (1) adults with CF and (2) parents or caregivers of children with CF. PwCF or their caregivers with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the United States. Interviews were recorded and transcribed, and data were coded and analyzed by two independent coders using a content-analysis approach with a constant comparative method to generate themes.

Results: A total of 26 participants from 22 CF programs were interviewed. The sample included 17 adults with CF and nine parents of children with CF. Participants were predominantly White (88%) and female (92%). Five overarching themes emerged: (1) food insecurity among CF patients and their families is onerous, (2) financial constraints imposed by the CF disease contribute to food insecurity, (3) federal and state programs provide limited food assistance, and other support is minimal, (4) shame and stigma engulf conversations around food insecurity with CF care teams, and (5) food insecurity screening in clinical settings is critical.

Conclusions: Food insecurity among pwCF is invisible, but its consequences are dire. Assistance is limited, screening is inconsistent, and stigma is widespread. There is an urgent need to normalize food insecurity screening, standardize the screening process, and expand food assistance programs for pwCF.