Treatment characteristics of congenital heart disease and behaviour problems of patients and healthy siblings

OBJECTIVE: To examine behaviour problems of children in families where one child was diagnosed with congenital heart disease (CHD), in relation to the intensity of treatment required for the CHD. METHODOLOGY: Treatment intensity was based on patients' hospitalizations, surgical operations, current treatment, frequency of check-ups and finality of surgical repair. Mothers of 29 patients and 43 healthy siblings (4-14 years old), and a sub-sample of fathers, reported on behaviour problems of their children and rated the frequency of considering patient's CHD while performing routine child care in nine areas of family life (accommodation of illness). RESULTS: High treatment intensity was associated with high accommodation of illness and elevated behaviour problems among patients. In contrast, siblings in families where treatment intensity was low, but accommodation of illness high were at most risk for behaviour problems. CONCLUSIONS: Treatment intensity has a markedly different impact on behaviour problems of patients and healthy siblings. It is important for parents and healthcare professionals to provide both patients and siblings with information about the patient's medical condition, regardless how much treatment that condition may need.