(9 - Friday) Wayfinding through the “Ocean of the Great Unknown”: How Lactating Parents Establish a Direct Breastfeeding Relationship with an Infant with Critical Congenital Heart Disease
Objective: Lactating parents (LPs) of infants hospitalized for critical congenital heart disease (CCHD) face barriers to direct breastfeeding (DBF), with exclusive DBF rates as low as 3.2% at 6 months. While experiences of establishing DBF in other hospitalized neonates have been described, infants with CCHD encounter unique challenges such as volume restriction, lengthy fortification, and historic healthcare team discouragement of DBF, and available evidence does not explain how DBF is established in this population. Currently, there is no evidence-based standard of DBF care for infants with CCHD, and substantial provider/site practice variation exists.
The objective of this study was to explain how DBF is established with an infant hospitalized for CCHD, from lactating parents’ (LPs) perspectives.
Methods: Using a qualitative grounded dimensional analysis approach, we interviewed 30 LPs of infants with CCHD who DBF their infant within the past 3 years. LPs received care from 26 cardiac centers across the United States; 57% of infants had single ventricle physiology. Analysis included open, axial, and selective coding; memoing; member checking; and explanatory matrices. Interviews and analysis continued until theoretical saturation.
Results: Findings were represented by a conceptual model, “Wayfinding through the ‘ocean of the great unknown’.” The core process of Wayfinding involved a nonlinear trajectory requiring immense persistence in navigating obstacles to DBF, occurring in a context of ever-present life-and-death consequences for the infant. Wayfinding was characterized by three subprocesses: navigating the relationship with the healthcare team; protecting the DBF relationship; and doing the long, hard work. Primary influencing conditions included relentless concern about weight gain, the infant’s clinical course, and the LP’s previous DBF experience. Establishing a DBF relationship was feasible, meaningful, and consequential – though often challenging.
Conclusions: The conceptual model of Wayfinding explains how DBF can be established and provides a theoretical framework for research and clinical practice. Future work is critically needed to support LPs’ DBF goals and increase the low DBF rates in this population.
