Quality of life of caregivers of children with cerebral palsy in Assam, India

Abstract

Background: Cerebral palsy (CP) is a common childhood disability worldwide that places significant demands on caregivers. Empirical evidence on caregiver strain is scarce in India. This cross-sectional study assessed the quality of life (QOL) of 140 purposively chosen caregivers of children aged 4-12 with CP in Assam, India, using the WHOQOL-BREF questionnaire. Methods: Subscale scores were computed with reliability confirmed using Cronbach's α. Spearman's rank correlation and chi-square tests were performed to investigate the associations of caregiver and child characteristics with the QOL of caregivers. Results: The overall QOL score was 48.46 ±11.49, with 82% of caregivers reporting poor QOL. Significant variations in QOL were associated with parental education, father’s occupation, perceived parental physical and mental health, social isolation, awareness of social services, child’s GMFCS levels, special school enrolment, associated conditions, and social support. Spearman’s rank correlation revealed that the father’s age, mother’s years of schooling, GMFCS levels, and associated conditions of the child were correlated with the QOL of caregivers. Conclusions: Community-level awareness generation programs, establishment of an affordable special school, and increased enrolment, along with a disability-friendly health system, will enhance the QOL of the caregivers.