Quality of life and burden of caregiving among the primary caregivers of children with disability in rural Karnataka

Introduction: The primary caregiver of a child with disability has to undergo a lot of difficulties in taking care of the child. Objective: To assess the quality of life and burden of caregiving of primary caregivers of children with disability registered in a CBR services in rural Karnataka. Methodology: A cross-sectional study was done among 100 children with disability and their primary caregivers. Interview schedule including socio-demography, WHOQOL-BREF, ZBI and WHODAS was used. Results: Mean age of caregivers was 36.38 of which 97% were women and 82% were mothers of children with disability. Mean age of children was 11.43 years, 56% males and most common diagnosis was multiple disabilities (38%). Mean caregiver burden according to Zarit scale was 33.27 and mean burden scores were significantly different between the disability domains of the children. Mean quality of life (QOL) scores for each domain was 49.6 in physical, 60.47 in psychological, 45.67 in social and 58.44 in environmental domains. Marital status of the caregivers was significantly associated with both physical and the social domain of the QOL. Occupation of the caregiver was significantly associated with the environmental domain and the type of disability in the children significantly affected the physical domain of the QOL of the caregivers. Conclusion: Caregiver QOL is overall poor but it was the lowest in the physical domain and higher in psychological domain. Caregiver burden scores were high and depends on the type of disability. Importance should be given to the care of the caregivers