“It’s like you’re feeding your child twice” Barriers and facilitators
to human milk feeding children with cystic fibrosis
Abstract
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.