Illness-related concerns of mothers of children with congenital heart disease

Objective: This study examined concerns expressed by mothers of children with congenital heart disease (CHD). The relationships among mothers' concerns, medical severity, and mother's emotional state were examined at two points in time. Method: Thirty-eight mothers of children with CHD aged 3 to 16 completed semistructured interviews and rating scales during hospitalization and 2 to 4 weeks after discharge. Mothers rated their distress about illness-related concerns, as well as their own depressed mood and anxiety. Mothers and two cardiologists rated the medical severity of each child's disease. Results: Mothers' concerns were reliably grouped into five categories: medical prognosis, quality of life, psychosocial functioning, effects on family, and financial issues. During hospitalization, mothers were most concerned about medical prognosis. Distress about most concerns decreased postdischarge, as did mother's anxiety and depressed mood. Mothers' perceptions of medical severity were associated with distress about psychosocial issues postdischarge. Mother's anxiety was not associated with number of concerns reported, or with distress about those concerns. Maternal depressed mood was associated with fewer illness-related concerns, but greater distress about those concerns. Conclusions: Illness-related concerns can be meaningfully categorized and are not necessarily a function of disease severity or mother's emotional state. An awareness of common concerns will improve clinical care by enabling practitioners to anticipate and address concerns in a proactive way. The results may inform the development of supportive mental health interventions for families of children with CHD.