The quality of life of primary caretakers of children with cerebral palsy

Abstract

ABSTRACT Background: Cerebral palsy (CP) is a heterogeneous group of disorder affecting the development of movement and posture, which is permanent nonprogressive. Previous studies in different regions have shown links between caregivers’ mental health and children’s well-being. However, the lack of such detailed research for the caretakers of children with CP and correlation of quality of life affected the type and severity of the condition; this necessitates the development of a new study to assess caregivers’ quality of life. Aim: Quality of life among caregivers of disabled children is an important concern in healthcare. We aim to evaluate the quality of life among caregivers of children with CP and to assess the factors affecting the caregivers’ quality of life, namely, age, gender, type, and gross motor function in children with CP. Methodology: This was a cross-sectional observational study, conducted over a period of 6 months. It included the caregivers of children with CP at a tertiary care hospital of Mumbai. Data were collected using the WHO BREF questionnaire. The children were divided into two groups (2 to 7 years and 7 to 12 years). The qualities of life of the caretakers of these two groups were compared in four domains, namely, physical, psychological, social, and environmental. Results: The study included 50 participants. Mothers (80%) and fathers (10%) were the primary caregivers. Caretakers of the children with cerebral palsy showed significant affected quality of life as calculated from WHO QOL BREF score in both age groups (2–7 and 7–12 years) and in all domains. Overall, the most affected domain in our study was of psychological health and the least affected domain was of the environmental domain. Conclusion: This study provides a snapshot of the impact of having a child with cerebral palsy on the lives of the caregivers Most of the caregivers in the study were mothers, and quality of life was affected in all domains mainly in psychological and physical domains. The study showed that there is a need for interventions in caregivers which can have an indirect impact on the children with CP.