Patients with univentricular heart in early childhood: parenting stress and child behaviour

Aims: To assess perceptions of child behaviour and parenting stress among the parents of young children with hypoplastic left heart syndrome (HLHS) and other forms of functionally univentricular heart defects (UVH). Methods: As part of our prospective nation-wide neurodevelopmental follow-up study, the parents of 23 patients with HLHS, 14 with UVH and 46 healthy controls at the mean age of 18 months received the questionnaires Child Behavior Checklist and Parenting Stress Index. Results: The reported level of total parenting stress was significantly higher among the mothers (mean score 241 vs 205, p < 0.001) and fathers (235 vs 202, p = 0.003) of patients with HLHS compared with those of controls. The parents of patients with HLHS reported significantly more total (mean T score 52 vs 45, p = 0.005) and internalizing (51 vs 41, p < 0.001) behaviour problems than the controls, but among the syndrome scales, a significant difference was only found in somatic complaints. The parents of patients with UVH did not report more parenting stress or emotional problems than the controls. Conclusion: Hypoplastic left heart syndrome, a severe congenital heart defect, increases parenting stress. The reported emotional maladjustment in affected children might in part be owing to somatic complaints.