(313) Breastfeeding & Nutritional Counseling in Early Cystic Fibrosis Care: An Opportunity for Shared Decision-Making

Background: Optimizing nutrition in early childhood is critical for children with CF as increased growth percentiles are associated with improved long-term outcomes. Unfortunately, weight challenges are one of the earliest manifestations of CF and families look to their care teams for guidance on interventions to support growth, which often includes formula supplementation or fortification.The purpose of this study is to understand families’ experiences with early nutritional recommendations, specifically perceptions of support for mothers desiring to breastfeed (BF) their children with CF.

Methods: Caregivers of children with CF were recruited from nine pediatric CF centers in the US and completed audio-taped, semi-structured phone interviews about early nutrition. Eligibility criteria included caregivers (age >=18) of a child with CF aged 1-5 years or 6-10 years if they had a G-tube. Interviews were transcribed and thematically coded to identify views on BF and supportive and unsupportive approaches from CF care teams.

Results: Study participants were 36 mothers (child mean age=4 years (SD=1.7), 36% female, 83% White); 27 (75%) mothers discussed a desire to BF. Themes included: 1) BF is a priority: “I wanted to breastfeed from the beginning because I know the health benefits are strong…I wanted to really persevere because of his health challenges. In the long run, I wanted him to have the best chance with antibodies and all that good stuff. So I really really tried to persevere through all of his feeding challenges.” (Mother, 3yo son); 2) Support for BF Despite Weight Challenges: “It's just a nice support where it doesn't make you feel like a failure, but also able to meet the needs of your baby. At no point did anybody say “You need to stop breastfeeding and just go to formula because your baby’s not gaining.” (Mother, 10yo son); 3) Need for More Support: “I wish I had been more supported in breastfeeding...I wish that they just would've educated me more on how to increase my breast milk supply from the clinic itself…They could've had resources like having lactation consultants for free” (Mother; 3 yo daughter); 4) Formula recommendations conflicted with BF goals: “At first, I was super-against it [formula]. I was, like, "Don't ever say that to me. I work so hard to breastfeed. This is such a struggle. I want to continue doing this.” (Mother; 4yo son); 5) Pressure of Breast is Best: “They were a little too supportive. Because it becomes pressure. And it's, "This is the best way." And, "If you can't do it this way, I guess we'll do it some other way." And there's just pressure to do that.” (Mother, 9yo son). Families discussed perceptions of how these conversations could be enhanced to support families’ knowledge, values, and goals related to approaches to early nutritional interventions.

Conclusions: Early feeding options are some of the first decisions many families must make in CF care. Many mothers prioritize BF their child with CF given the well-known health benefits, yet conflict can arise when they feel pressure to BF or pressure to supplement with formula. Results suggest that shared decision-making may be an ideal approach to use when navigating discussions about optimizing nutritional status for young children with CF, as the different options are value laden and require a personalized approach to ensure that families’ priorities are respected and incorporated into their child’s care.

Acknowledgements: This work was supported by the Cystic Fibrosis Foundation [DICKIN19B0]

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