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

Abstract

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. 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. 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. 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.