Parents of Children with Congenital Heart Disease Prefer More Information than Cardiologists Provide

Abstract

OBJECTIVES To determine whether pediatric cardiologists and parents of older children with congenital heart disease (CHD) share similar expectations regarding the education and counseling that should be provided to parents of children with CHD in both the prenatal and neonatal period. DESIGN Consenting parents of older children with CHD (age > 3 years) and cardiologists ranked the importance of education topics on a scale of 1 (unimportant) to 10 (very important). The rankings of parents and cardiologists were compared using Student's t-test. RESULTS We had 38 cardiologists and 41 parents complete the questionnaire. There was a statistically significant difference in rankings between cardiologist and parents of children with CHD (p<0.03). Parents consistently ranked topics as more important than cardiologists with a mean difference in rank score of 0.85±0.3. In the prenatal period, the most significant differences between parents and cardiologists were noted for information related to the child's quality of life. For neonatal counseling, the most significant differences were noted for information regarding follow-up care and the parent's ability to describe the child's CHD to medical personnel. CONCLUSION Parents of older children with CHD would prefer to receive more counseling and education in the prenatal and newborn period than cardiologists perceive is wanted.

Prenatal counselling for congenital anomalies: a systematic review

“…Whilst collectively parental preferences appear to align with the topics covered, satisfaction with counselling varied across studies. One study compared how parents and cardiologists ranked the importance of counselling topics for CHD and found that parents consistently ranked topics as more important than cardiologists . The only exception to this was pregnancy termination; a topic ranked higher by cardiologists, than parents.…”

Bad news: Families’ experiences and feelings surrounding the diagnosis of Zika‐related microcephaly

“…Internet resources then can help create virtual communities with the participation of family members living with similar phenomena, sharing their lived experiences, especially via messaging service and social media. However, access to additional sources of information or group support on the Internet can also increase anxiety when parents expose themselves to information about poor outcomes or inaccurate information (Arya, Glickstein, Levasseur, & Williams, 2013;Marokakis, Kasparian, & Kennedy, 2016).…”

Experiences of informational needs and received information following a prenatal diagnosis of congenital heart defect

“…The decision regarding the future of the pregnancy entails a process of chosen loss and lost choices, as the pregnancy is wanted but the fetal malformation is not . Information matched to individual needs is crucial for women to cope with the situation following a prenatal diagnosis, and it has previously been concluded that expecting parents consistently rank informational subjects as more important than pediatric cardiologists do . Women faced with a prenatal diagnosis of a malformation have variable informational needs, which occasionally are unmet .…”