Knowledge of Congenital Heart Disease of Mothers: Presentation of a Standardized Questionnaire and First Results

Abstract

The "Hannover Inventory of Parental Knowledge of Congenital Heart Disease," a questionnaire for the assessment of knowledge about congenital heart disease (CHD) for use in parents, is presented, and the first results are reported. It consists of eight subscales covering general knowledge of cardiac functioning, signs and symptoms of the child's individual CHD before and after treatment, type of individual CHD and treatment, management of CHD, surveillance of deterioration, endocarditis, and physical activity. One hundred thirty-seven mothers completed the questionnaire immediately after their children underwent CHD surgery. The questionnaire has satisfactory psychometric properties. Knowledge on most dimensions was satisfactory, but it was rather poor with respect to important subscales as endocarditis and surveillance of deterioration. The questionnaire covers a range of relevant topics by taking the individual CHD into account. Parents have satisfactory knowledge of CHD in some areas, but knowledge about preventive behaviors turned out as rather poor. This needs to be improved in order to make parents capable to take their share of after-treatment care.