Disease Burden in Caregivers of Children with Congenital Heart Disease in Children’s Medical Center, Tehran, Iran

Congenital Heart Disease (CHD) is the most common congenital malformation in infants. The burden is defined as the perceived caregiver’s sufferings of their emotional or physical health, social and financial life as a result of caring for loved ones. Lifelong CHD endures significant burdens on patients, families, and society. Parents of children with chronic illnesses such as CHD are more likely to be challenged than other parents. Furthermore, evidence shows the impact of this burden on parents’ health. Therefore, this study aimed to evaluate the burden on caregivers of patients with CHD.

In this cross-sectional study, 72 caregivers of patients with CHD in the Children’s Medical Center, Tehran, Iran were recruited. Face-to-face interviews with caregivers had been done. The demographic and disease-related data were collected. Zarit Burden Interview (ZBI) was applied for disease burden assessment. Statistical analysis was performed in SPSS version 22.

In the present study, most caregivers 34 (47.2%), suffered from moderate to severe burden. The mean caregiver burden score was 42.78 which is categorized as a moderate to severe burden score. The siblings’ number and level of caregivers’ education had a significant association with the caregiver’s disease burden.

CHD is associated with a significant caregivers’ disease burden. Although the disease-related factors were not related to disease burden, the higher caregivers’ education was related to fewer caregivers’ disease burden. Therefore, paying attention to the caregiver’s burden is an important clinical issue.