Maternal Health Literacy and Prenatal Learning Experiences Related to Diagnosis and Surgical Management: A Qualitative Study of Women With Pregnancies Associated With Surgically Correctable Congenital Anomalies

Abstract

Objective: To describe experiences of expectant mothers in gaining information and knowledge about diagnoses and surgical management, following prenatal diagnosis of a surgically correctable congenital anomaly (SCCA).

Method: Using semi-structured interviews, we studied women with pregnancies associated with SCCA, including congenital diaphragmatic hernia (CDH), congenital pulmonary airway malformation (CPAM), gastroschisis (GS), omphalocele (OM), and myelomeningocele (MMC), from 2018-2023 that resulted in infant live birth and survival until discharge at a tertiary care center. Interviews were coded and analyzed using thematic analysis.

Results: Interviews with 22 participants were included. Diagnoses included CDH (n = 8), CPAM (n = 4), GS (n = 4), OM (n = 1), and MMC (n = 5). Four thematic categories emerged: (i) prenatal care prior to fetal care center evaluation, (ii) maternal knowledge, (iii) information-gathering, and (iv) social networks. Prenatally, most participants had limited knowledge about SCCA and comfort with completing healthcare-related tasks. Multi-disciplinary fetal care was vital to their understanding of SCCA diagnosis and surgical management plan.

Conclusion: Following prenatal diagnosis of SCCA, expectant mothers struggle with obtaining information that is at their literacy level and specific to their informational needs. Studies are needed to develop literacy-informed approaches to counseling after prenatal diagnosis of SCCA to meet parents' unique informational needs and prepare them for their infants' postnatal care.