Background: Mothers are the link between patients, physicians, and other caregivers. Therefore, they should be well informed about the child's heart defect and accompanying issues. This study aimed to assess the mothers' understanding of their child's heart defect at hospitalisation and one year later and to analyse the individual development and associated factors.
Material and methods: Mothers of children with CHD (aged ≤2 years) were interviewed at time of hospitalisation and after one year. Development was calculated using the Wilcoxon signed-rank test. Knowledge was assessed using the Hannover Inventory of Parental Knowledge of Congenital Heart Disease that consists of eight subscales. Associated factors were self-assessed knowledge at hospitalisation, educational level, cardiac diagnosis, self-assessed severity of CHD, and source of information at follow-up.
Results: Mothers showed mixed understanding at hospitalisation, but their knowledge improved over a 1-year time span. This was especially true for the subscales "management of CHD" and "surveillance of deterioration", which resulted in an overall good knowledge at follow-up, whereas knowledge on infective endocarditis was still poor. Mothers with lowest and highest education had the most notable improvements. The same holds for caregivers with children with more severe CHD and who rated their knowledge as less than good.
Conclusion: Overall, mothers showed significant improvement especially for topics that are important to provide adequate care, but still revealed knowledge gaps one year after hospitalisation. Consequently, clinicians should evaluate the individual knowledge level at all times and inform mothers accordingly.
Keywords: CHD; infancy; knowledge; longitudinal design; parenting; understanding.