Caring for a Child with Cerebral Palsy: Experiences of Primary Caregivers from a Tertiary Hospital in Kenya

Abstract

Abstract Cerebral palsy (CP) is a chronic and non-progressive disability that affects the brain's motor function, posture, and movement. Children with CP rely heavily on caretakers due to the wide range of physical, neurological, and behavioral problems they experience. Caring for a child with a disability presents greater difficulties compared to caring for children without impairments. The demands of caring for a child with cerebral palsy have a direct impact on the mental and physical well-being of the caregiver, necessitating a substantial amount of physical and emotional assistance. The consequences of caregiving include physical, financial, socioeconomic, and emotional strain, all of which affect overall quality of life. The strain from caring for a child with CP can also be the source of marital problems and even isolation from the community. Given the unique needs of children with CP, there is a need for further exploration of the lived experiences of their caregivers. This study aimed to understand the lived experiences of primary caregivers and to explore the sources of support for those caring for children with CP. The study used a qualitative, phenomenological design and employed non-probability purposive sampling to achieve the desired sample size. Data were collected using an in depth semi-structured interview guide, targeting a sample size of at least 12 participants; however, data collection continued until saturation was achieved. Participants were primary caregivers of children aged 4 years and above, with a documented diagnosis of cerebral palsy, who were on follow-up at AIC Kijabe Hospital at the pediatric outpatient department, specifically at the developmental clinic. The study focused on parents or caregivers who are responsible for the daily care of children with CP and have been in that role for at least 3 months. Data were collected using a digital audio recorder and transcribed. Data from interviews were coded and later translated into themes for analysis. The study revealed that caregiving for children with cerebral palsy is characterized by mixed experiences, where positive moments, such as observing developmental milestones, provided hope, but negative experiences, including financial strain, stigma, emotional stress, and physical exhaustion, dominated caregivers‘ lives. Significant challenges included high therapy costs, inadequate assistive devices, a lack of inclusive schools, and limited access to professional support, resulting in unmet needs for financial, medical, and psychosocial support. Existing support systems were largely informal, relying on family, friends, and occasional well-wishers, with minimal institutional or government assistance. The study concludes that caregiving imposes significant emotional, financial, and physical burdens, compounded by inadequate structural support. It recommends establishing government-funded financial aid and assistive device programs, expanding inclusive education services, and providing accessible therapy centers to reduce caregiver strain. Additionally, community-based support initiatives and counseling services are necessary to enhance caregiver well-being and promote quality care for children with CP.