Caregiver burden assessment of children with neurodevelopmental disorders in a tertiary care centre

Abstract

Families of children with neurodevelopmental disorders have significant financial and social stressors and difficulties with coordinating medical care. Caregivers play a central role in the rehabilitation of these children. This was a hospital based cross sectional study in the Department of Pediatrics in the year 2021-22 in a tertiary care government hospital in Kerala.Caregiver burden was assessed using Zarit Burden Interview and the clinical profile was assessed using a self made proforma. This was done for 86 children and their caregivers.A total of 86 children and caregivers were included in the study and the Zarit burden scores were compared between the categories. 55.8% of the caregivers fell into the category of severe burden. Amongst these, in caregivers of children with cerebral palsy, 68% had a burden score of >60 or categorized as severe burden. In cerebral palsy, the burden score of those caregivers of children with spastic quadriparesis showed 81% falling into the category of severe burden.Caregiver burden continues to be a big concern in our setting where the families are plagued not only by factors affecting the health of their child but also with social and financial burden. Burnout of the caregivers can in turn affect the well being of their children and families.