Parents' understanding of their child's congenital heart disease

Objectives: To assess parents' understanding of their child's congenital heart disease in various knowledge domains and to identify significant determinants of parental knowledge. Design: Cross sectional questionnaire survey Setting: Tertiary paediatric cardiac centre. Patients: 156 parents of children with relatively simple congenital heart defects were recruited from the outpatient clinic of a tertiary cardiac centre over a three month period. The questionnaire comprised 10 items of knowledge under three domains: nature of heart disease and its treatment; impact of heart disease on exercise capacity; and infective endocarditis and its prevention. The frequency distribution of the parents' knowledge in the different domains was determined. Univariate analyses and logistic regression were performed to identify significant determinants of knowledge in selected items. Results: While 59% of parents correctly named their child's congenital heart disease, only 28.8% correctly indicated the heart lesion(s) diagrammatically. However, more than 80% of parents were aware of the indications and aims of previous surgical and transcatheter interventions. About half of the parents were aware of possible aetiologies and of the hereditary nature and symptoms attributable to underlying heart disease. Disappointingly, of the 56 parents whose children were taking cardiac medications, only 25 (44.6%) and 4 (7.1%) knew correctly the functions and important side effects of the medications, respectively. With regard to exercise capacity, 59% of parents indicated its level appropriate for the heart lesion. While 26.9% of parents had heard of the term "infective endocarditis'', slightly more than half of the parents were aware of the need for antibiotics before dental procedures. Significant determinants of knowledge in the nature of heart disease were cardiac diagnosis, occupation of parents, and their educational level. Logistic regression failed to identify any significant determinants of parental knowledge in the other two domains. Conclusions: Parents of children with congenital heart disease have important knowledge gaps. Our findings suggest that the current educational programme is inadequate and needs to be refined to promote better parental understanding of their child's heart disease, with the ultimate aim of enabling parents to impart such knowledge accurately to their children.