Uncertainty of Prenatally Diagnosed Congenital Heart Disease: A Qualitative Study

Abstract

IMPORTANCE Parents who receive a prenatal diagnosis of congenital heart disease may experience more short-and long-term stress than those who receive a postnatal diagnosis. To identify potential interventions to ameliorate that stress, the longitudinal emotional experience of parents must first be understood.OBJECTIVE To better understand parents' accounts of their own prenatal experience, particularly aspects they found to be stressful or challenging, and to identify strategies to improve support. DESIGN, SETTING, AND PARTICIPANTSThis qualitative study included analysis of transcripts of audio recorded telephone interviews with pregnant mothers and their support persons, as applicable, who were referred to and seen at the Fetal Cardiology Clinic at Vanderbilt Children's

The parental journey of fetal care: a systematic review and metasynthesis

“…Race or ethnicity was reported in only 6 of the studies and was predominantly white. 10,11,13,14,16 Owing to inconsistent reporting of economic, educational, or marital status, an assessment of the cumulative sample's characteristics was not possible.…”

“…10,13,16,17 Limited and confusing information presented barriers to gaining understanding, which contributed to anxiety, uncertainty, and lack of trust in the HCPs. 10,11,17 Parents reported few positive experiences related to the initial detection of the fetal anomaly, except for the benefit of learning about it prenatally.…”

“…Being told early in the process that the anomaly was not their fault and that how they were feeling and thinking was normal was an important facilitator to both gaining understanding and feeling understood. 7,11 One mother said that the most important thing she learned at the fetal care center was that "I wasn't doing something wrong . .…”

“…11 Gaining understanding and feeling understood was also facilitated by HCPs providing written information and illustrations that parents could take home 5,6 and, perhaps most importantly, communicating in ways that felt tailored to parents as individuals (eg, their knowledge level, informational preferences, and values). 6,12,14,16,17 Parents felt understood when HCPs "knew their story," 11,12,14 respected their informational preferences, [6][7][8]15,17 and acknowledged and validated their experiences, needs, feelings, beliefs, and decisions. 5 −17 I just remember me and my husband were trying to figure out if what we were feeling was right or wrong, and [the HCP] came in.…”

Managing Uncertainty in Prenatal Diagnosis of Congenital Heart Disease

“…The article by Harris and colleagues captures well this sense of uncertainty. 6 The authors report on a qualitative study of 27 individuals from 17 families who participated in telephone interviews conducted after the initial prenatal consultation and again at a follow-up prenatal cardiology visit.…”