Understanding the lives of caregivers of children with cerebral palsy in rural Bangladesh: use of mixed methods

Abstract

Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important forthe development of appropriate interventions. Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy. Methods: The study used mixed methods. The PedsQL™Family Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011- April 2013. Data collection was from September 2011- Dec 2012. Results: The mean overall and sub-scale PedsQL™ scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.

Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.