Mapping Parents’ Journey Following Prenatal Diagnosis of Congenital Heart Disease (T315C)

Abstract

1.Describe Results from this analysis on how parents process and cope after receiving a prenatal diagnosis of congenital heart disease.2.Recognize that the parental role on the medical team differs prenatally and postnatally. Parents who receive a prenatal diagnosis of congenital heart disease (CHD) experience more stress than those who receive one postnatally, potentially due to the pervasive prenatal uncertainty experienced. In order to identify and support parents’ processing and coping, their longitudinal emotional experience must first be understood. To better understand parents’ accounts of their longitudinal prenatal and postnatal experience—particularly processing and coping mechanisms—to identify strategies to improve support. This single-center, longitudinal qualitative study included pregnant mothers and their support persons followed in fetal cardiology clinic for suspected CHD from May through August 2019. Twenty-seven individuals from 17 families participated in 62 phone interviews during pregnancy and postpartum, 27 after the initial cardiology consultation, 15 after a follow-up visit, and 20 after birth. Applied thematic analysis was used to code and analyze professionally transcribed interviews. Coding and codebook revisions occurred iteratively, with intercoder reliability assessed routinely. One author coded all transcripts; a second independently reviewed one-fifth of the transcripts at fixed intervals to ensure interrater reliability >80%. Most interviewees were mothers (16 [59%]) or fathers (8 [30%)]. Fetal diagnoses included a range of severe CHD. Prenatally, parents sought to maintain hope while understanding the diagnosis; their coping styles varied depending on prognosis severity. Postnatally, with confirmation of prenatal diagnoses, parents’ sense of control expanded, they desired more active engagement in clinical decision-making. In order to enhance effective communication, we must understand how parents conceptualize hope in relation to diagnostic understanding longitudinally. As prognostic uncertainty diminishes postpartum, the parental role on the team may shift, and providers may need to provide different support.