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.

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.