P236 - PARENTAL UNDERSTANDING OF AND CONFIDENCE IN DISCUSSING THEIR NEWBORN’S SEVERE CONGENITAL HEART DISEASE

Background: Congenital heart disease (CHD) is one of the most common congenital anomalies in neonates. Severe CHD often requires early surgical interventions, and understanding the nature of these anomalies can be challenging for parents. This study aimed to evaluate parental understanding of their newborn’s CHD and their confidence in discussing their baby’s diagnosis.

METHODS AND RESULTS: This was a prospective assessment of parental understanding of their newborn’s CHD after standard local education. We included families of neonates admitted to the neonatal intensive care unit for severe CHD within 6 weeks of birth and assessed their knowledge within 14 days of admission. Families unable to communicate in English were excluded. We assessed one parent per family. The parents’ ability to name and describe the CHD diagnosis was assessed using audio recordings graded by 3 pediatric cardiologists. Parents’ education level, English language proficiency, and their self-perceived understanding of the CHD and confidence in discussing the CHD diagnosis with friends/family and their medical team were assessed using structured questionnaires.
Eighty‐seven families were included in the study. The CHD diagnoses are provided in Table 1. Parental knowledge assessment occurred at a median of 7 (IQR 4-9) days of age and 5 (IQR 3-7) days of admission to our hospital. Median parental age was 32 (IQR 28-37) years. Parental sex, English proficiency, education level, self-reported understanding, and confidence in discussing their child’s CHD are provided in Table 2. Prenatal diagnosis was reported by 63 (73%) families. Audio recording assessment demonstrated 58 (67%) families could correctly state the CHD and 48 (58%) could describe the CHD. Prenatally diagnosed families were more likely to be able to name (76 vs 43%, p=0.005) but not to describe the CHD (63 vs 43%, p=0.114). The ability to name the CHD was associated with higher parental education level and greater English proficiency, but not infant age at assessment, parental sex, or confidence in discussing the CHD with family/friends. Families who were able to name the CHD were more often somewhat confident or confident in discussing the infant’s condition with the medical team than families who could not name the CHD (90 vs 68%, p=0.013).

Conclusion: Our findings highlight critical parental knowledge gaps in naming and describing their neonate’s severe CHD despite postnatal and, in most cases, prenatal counseling. Parents able to name the CHD were more confident to engage in discussions with the medical team, suggesting that targeted education may improve parental empowerment and engagement.