Social impact on families of children with complex congenital heart disease

Abstract

BACKGROUND AND OBJECTIVES: The care of children with complex congenital heart disease creates emotional and financial hardships for their families. We evaluated the social impact on families of patients with complex congenital heart disease (CHD) who underwent single ventricle repair. DESIGN AND SETTING: Cross-sectional survey conducted at the pediatric cardiology outpatient department at Prince Sultan Cardiac Center-Qassim (PSCC-Q). PATIENTS AND METHODS: All patients diagnosed and treated for complex CHD of single ventricle pathophysiology and seen in the pediatric cardiology at PSCC-Q were eligible for the study. Families of these patients completed a questionnaire conducted by one interviewer. The Impact on Family Scale (IFS) questionnaire of Stein and Riessman was instituted. Patients were divided into two groups according to the cardiac diagnosis and the requirement for medical or surgical management. The first group included patients with CHD who do not need any medical or surgical intervention, e.g. tiny VSD or small ASD. The second group included patients with complex CHD with single ventricle pathophysiology who underwent Glenn and/or Fontan procedures. The mean impact on family scores was compared among the different groups by two sample t test analysis. RESULTS: Families of 41 children with CHD were interrogated during the study period from September 2011 to February 2012. Patients were divided into two groups. Group one (20 patients, 49%) with simple CHD and group two (21 patients, 51%) with complex CHD who are managed in the univentricular tract. Families of children who underwent single ventricle repair had significantly higher IFS (mean and standard deviation of 62 [7]) than families with minor heart disease (mean of 51 [4]) (P=.005). CONCLUSION: Families of patients who underwent single ventricle repair have significant social impact because of their child illness. A supporting public group should be initiated and encouraged.