"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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Introduction: One-third of people with cystic fibrosis (PwCF) are food insecure, with profound implication for their health. This qualitative study explored lived experiences with food insecurity and perspectives on food insecurity screening in PwCF. Methods: We conducted semi-structured qualitative interviews with two key stakeholder groups: adults with CF and caregivers of children with CF. PwCF with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the US. 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 is severe and debilitating (“What you don’t see is Mom returning all these bottles just to afford that dollar box of noodles”; “I skip breakfast and lunch so that she can have whatever it is, and then for supper, we just always feed her first”; “end up being a lot of ramen noodles and macaroni and cheese”); (2) Extensive financial constraints imposed by the CF diagnosis and daily therapies contribute to food insecurity (“[Medical bills] just accrue faster than we can pay them off”; “There has been times where my check couldn’t afford to pay a bill, let alone get any groceries” “It's hard to gain weight when you are having to worry about making your food last to the end of the month”); (3) Existing resources and programs to combat food insecurity are insufficient (“They just nod their heads and don’t give me any solutions”; “I don't think they quite fully grasp it”; “We never qualify”); (4) Shame and stigma engulfs conversations around food insecurity with CF care teams (“I already, when I go to clinics, feel very judged”; “We constantly feel like we’re a burden”); (5) Food insecurity screening is critical in clinical settings (“If they didn’t ask me, I woulda never found the help”); recommendations may differ between pediatric and adult programs. Conclusion: 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 and expand food assistance programs for PwCF.

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