Quality of Life of Caregivers of Children with Cerebral Palsy: Evidence from Assam, India

Daisy Saikia, PhD Research Scholar
Manas Ranjan Pradhan, International Institute for Population Sciences (IIPS)

Cerebral palsy (CP) is a prevalent childhood disability worldwide. Children with CP have numerous challenges, making them highly reliant on their caregivers. This study uses the WHOQOL-BREF questionnaire to assess the quality of life (QOL) of caregivers of children with CP and the factors affecting it. This cross-sectional study, involved 140 caregivers of children with CP, assessing their quality of life (QOL) using WHOQOL-BREF subscale scores in Assam, India. Bivariate analysis was conducted to present the socio-demographic variation in QOL and Spearman's rank correlation to investigate relationships between various ordinal characteristics and QOL. The QOL score for caregivers was 48.46 ±11.49, with factors such as caregivers’ years of schooling, occupation, perceived health, social isolation/discrimination, awareness of social support & information groups, children's GMFCS level, special school enrolment, other health problems, inclusive spaces, and relatives & neighbours behaviour affecting caregivers' QOL. Spearman's rank correlation showed a correlation between the caregiver's age, years of schooling, GMFCS level, & associated conditions of the child, and caregivers’ QOL. Caregivers of children with CP experience lower QOL, with the primary factors being GMFCS levels and associated conditions of children. Thus, necessitating the strengthening of the public health system for the well-being of caregivers.

Keywords: Health and Morbidity, Children, Adolescents, and Youth

See extended abstract.