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“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
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  • Soumya Niranjan,
  • Georgia Brown,
  • Julianna Bailey,
  • Robin Geurs,
  • Keith Robinson,
  • Michael Schechter,
  • Kate Powers,
  • Cristen Clemm,
  • Kim Reno,
  • Gabriela R. Oates
Soumya Niranjan
The University of Alabama at Birmingham
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Georgia Brown
Cystic Fibrosis Foundation
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Julianna Bailey
The University of Alabama at Birmingham
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Robin Geurs
The University of Alabama at Birmingham
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Keith Robinson
The University of Vermont Children's Hospital
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Michael Schechter
Children's Hospital of Richmond at Virginia Commonwealth University
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Kate Powers
Albany Medical College
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Cristen Clemm
Cystic Fibrosis Foundation
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Kim Reno
Cystic Fibrosis Foundation
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Gabriela R. Oates
The University of Alabama at Birmingham

Corresponding Author:[email protected]

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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.
Submitted to Pediatric Pulmonology
07 May 2024Assigned to Editor
07 May 2024Submission Checks Completed
07 May 2024Reviewer(s) Assigned
12 Jun 2024Review(s) Completed, Editorial Evaluation Pending
15 Jun 2024Editorial Decision: Revise Major
22 Jun 20241st Revision Received
08 Jul 2024Review(s) Completed, Editorial Evaluation Pending
10 Jul 2024Editorial Decision: Accept