Background: Cystic Fibrosis Foundation guidelines recommend human milk (HM) as the ideal source of nutrition for children with CF (cwCF). Despite known pulmonary and nutritional benefits, fewer cwCF ever receive HM compared to the general population. Early nutrition choices are preference-sensitive, yet little is known about the factors that impede or sustain HM feeding among parents of cwCF. Objectives: Explore perceptions and experiences of mothers of cwCF who initiated HM feeding. Methods: Mothers of cwCF aged ≤10 years completed audio-taped, semi-structured interviews describing their experiences with HM feeding. Interviews were transcribed and two researchers independently coded the transcripts and conducted content and thematic analysis using an inductive approach. Results: Participants included 28 mothers who initiated HM feeding. Major themes included 1) the impact of a CF diagnosis on HM feeding plans 2) CF-specific challenges to HM feeding 3) mixed perceptions of the CF team’s support for HM feeding and of the role of formula in CF nutritional care and 4) the benefit of lactation consultants as part of the CF care team. Conclusion: Many parents prioritize HM for their cwCF given the well-established health benefits. However, CF-specific barriers to HM feeding are common and nutritional challenges necessitating fortification add additional barriers to sustained HM feeding efforts. While HM may improve long-term pulmonary outcomes, our findings demonstrate the need for personalized support for mothers desiring to HM feed to facilitate shared decision-making around options to optimize early nutritional status among cwCF.

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.