Burden and Coping Mechanisms of Cerebral Palsy Caregivers: Qualitative Evidence from Western Kenya

Abstract

The purpose of this study was to explore the burden and coping mechanisms of cerebral palsy caregivers in Western Kenya, where the voices of primary caregivers are scarcely documented. Cerebral palsy (CP) is a chronic condition that arises in childhood and is the most common cause of disability globally, with a prevalence rate estimated at 3.6 per 1000 children. Children with CP aged 3 years and above tend to have multiple disabilities; caring for them can lead to considerable burden requiring several coping mechanisms. This qualitative study explored the burden and coping mechanisms of Cerebral Palsy Caregivers (CPC) through data collected via in-depth interviews with 14 caregivers and focus group discussions with social workers. Purposive convenience sampling was used to select caregivers and social workers from a special school for children with CP in Kakamega County, Kenya. Data was audio-recorded, transcribed, and analysed thematically, with presentation done through verbatim excerpts. Results showed that burdens were financial, psychosocio-cultural and physical, while parents coped through religion, social support groups, medical intervention and self-acceptance. In conclusion, caregivers of children with cerebral palsy face multidimensional burdens that are particularly complex in low- and middle-income settings like Western Kenya. The study recommends awareness creation to communities to positively impact caregiver well-being, with quantitative studies needed to support these findings.