The University of Alabama at Birmingham, Birmingham, Alabama, USA.
Community Advisor to the Cystic Fibrosis Foundation, Bethesda, Maryland, USA.
Pediatr Pulmonol. 2024 Dec;59(12):3228-3239. doi: 10.1002/ppul.27179. Epub 2024 Jul 23.
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.
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.
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.
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.
三分之一的囊性纤维化（CF）患者存在食物不安全问题，这对他们的健康产生了深远的负面影响。本定性研究旨在探索 CF 患者或其照护者的食物不安全经历，并总结他们对 CF 照护项目中食物不安全筛查的看法。
对两组人员进行半结构化定性访谈：（1）成年 CF 患者；（2）儿童 CF 患者的父母或照护者。通过美国各地的儿科和成人 CF 项目，向先前有记录的食物不安全的 CF 患者或其照护者推荐参与研究。访谈进行录音并转录，两名独立编码员采用内容分析法和不断比较法对数据进行编码和分析，以生成主题。
共有来自 22 个 CF 项目的 26 名参与者接受了采访。该样本包括 17 名成年 CF 患者和 9 名儿童 CF 患者的父母。参与者主要为白人（88%）和女性（92%）。五个总体主题出现：（1）CF 患者及其家庭的食物不安全问题令人痛苦；（2）CF 疾病带来的经济限制导致食物不安全；（3）联邦和州计划提供有限的食品援助，其他支持微不足道；（4）与 CF 护理团队讨论食物不安全问题时，充斥着耻辱和耻辱感；（5）临床环境中的食物不安全筛查至关重要。
CF 患者的食物不安全问题是无形的，但后果是严重的。援助有限，筛查不一致，耻辱感普遍存在。迫切需要使食物不安全筛查正常化，标准化筛查过程，并扩大 CF 患者的食物援助计划。
