“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 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 9
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; (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.