Caregiver burden among parents of children with chronic diseases: A cross-sectional study.

Abstract

This study aimed to assess the perceived caregiver burden among parents of chronically ill children in Jordan. Although there are few studies on the accurate prevalence of chronic diseases among Jordanian children, there are a few on the burden of caregiving, which is important because most children with chronic illness rely on their caregivers to perform their daily tasks. In Jordan, little is known about the caregiver burden associated with caring for children with chronic diseases. A cross-sectional design was reported in line with the STROBE guidelines. The Katz Index of Independence was used to determine the children's level of dependence, and the Burden Scale for Family Caregivers was used to measure the caregivers' level of burden. Nearly, 49.3% of caregivers had a very severe burden, 31.2% of children had a severe functional impairment, 19.6% had a moderate impairment, and 49.3% had full functionality. Based on their children's dependency, caregivers' subjective burden varied greatly (p< .001). Fully functional children had a far lower disease burden than severely and moderately disabled children (p< .001). The caregiver burden score differed significantly across chronic disease categories (p< .001). Unemployed caregivers had a far higher subjective burden than working caregivers (p= .009), and single (divorced/widowed) caregivers had higher burdens than married caregivers. Various factors can increase caregiver burden. Therefore, healthcare providers must plan holistic and family-centred interventions to reduce the caregiving burden. There is a need to establish support programs to help reduce the level of burden among caregivers of children with chronic diseases.