Parental impressions and perspectives of efficacy in prenatal counseling for single ventricle congenital heart disease

Although commonly performed, optimal techniques, strategies, and content to achieve the most effective prenatal counseling have not been explored. We investigate the efficacy of prenatal counseling via survey feedback of parents of children with prenatally diagnosed single ventricle. Grades of counseling using a Likert scale (1–5) were solicited to assess: 1) overall impression of quantity of counseling, 2) explanation of the heart defect, 3) preparation for heart surgery, 4) preparation for hospital course and care, 5) preparation for complications and outcomes of a Fontan circulation, and 6) preparation for neurological, school related or behavioral problems. Impressions were solicited concerning specific providers. A comprehensive fetal counseling score was calculated for each participant. Burden of care including length of hospitalization was explored as impacting prenatal counseling grades. There were 59 survey respondents. Average age of the children at the time of survey was 4.6 ± 3.3 years (range 1–10 years). Highest grades were for explanation of the heart condition, with lowest grades for preparation for neurological, school related or behavioral problems. Cardiac surgeon received the highest with social worker lowest grade for provider. Negative correlation was found between the composite fetal counseling score and parental recollection of length of hospitalization (Pearson r = − 0.357, p < 0.01). Prenatal counseling for neurological, school related and behavioral problems in single ventricle is deficient. Further studies analyzing prenatal counseling techniques and content, can help improve upon the delivery of this important aspect of prenatal care.