Communication Challenges in the Prenatal Care of Infants With Surgical Congenital Anomalies

Clear and effective health communication is essential in high-stakes settings, such as when discussing prenatal fetal diagnoses. We sought to understand the experiences of mothers navigating a prenatal diagnosis of surgically-correctable congenital anomalies.

Semistructured interviews with mothers of children with prenatally-diagnosed surgically-correctable congenital anomalies were conducted using purposive convenience sampling. Inductive coding was performed by four coders. Emergent themes were identified using thematic analysis.

This study included 22 participants with a median (interquartile range) age of 31y (26-34) and median (interquartile range) time from prenatal diagnosis to interview of 44 months (19-58). Three themes were identified that captured the mothers' experiences with communication: 1) The power of words left unsaid emphasizing (1a) the stress of the unknown and (1b) lack of clear and timely communication; 2) Emotional turbulence of a change in diagnosis; and 3) Patient-identified areas for improvement including (3a) leaving room for uncertainty, (3b) the need for a delicate delivery, and (3c) the importance of considering the source of information.

These data identify the current challenges in patient-provider communication during the prenatal period and can inform future efforts to improve communication.