| dc.description.abstract | Background: Cerebral palsy (CP) is a complex motor disease affecting the central nervous system (CNS). The damage to the CNS leads to irreversible brain lesions, and hence CP may occur before, during, or soon after birth. According to recent global population-based study estimates, the prevalence of CP is 1 to nearly 4 per 1,000 live births. The burden of CP in developing countries like Uganda is not well known due to a lack of or limited research on the subject. Caregivers must deal with their child's constantly changing needs, which make caring for a child with cerebral palsy quite demanding. Caregiving for a child with cerebral palsy can be detrimental to the physical and mental health, social interactions, and financial circumstances of caregivers.
Purpose: This study explored the lived experiences and challenges of caregivers of children with cerebral palsy aged 2 to 17 years at Mulago National Referral Hospital in Uganda.
Methods: It was a hermeneutic phenomenological study. About 10 to 25 caregivers of children with cerebral palsy aged 2 to 17 years, who attend the Cerebral Palsy Rehabilitation Clinic or Pediatric Neurology Clinic of MNRH, were purposively selected to be interviewed. The data collection process was guided by the principle of data saturation. Data was collected using an in-depth interview guide, with each interview estimated to last about 30 to 45 minutes. Data was transcribed using open coding and analyzed thematically.
Results: Five themes which were derived from the theory of chronic sorrow include: Loss experience, disparity, chronic sorrow, triggers, and management methods. Caregivers are marked by a blend of love, dedication, sorrow, and joy. The challenges faced by caregivers encompassed financial burdens, stigma, discrimination, and emotional strain. These challenges not only impact the caregivers' well-being but also hinder the optimal development and quality of life of children with cerebral palsy
Conclusion: The study revealed a complex tapestry of emotions, challenges, and coping strategies. This study has provided invaluable insights into the multifaceted nature of caregiving within the context of cerebral palsy, shedding light on the emotional, psychological, and practical dimensions that caregivers navigate on a daily basis. | en_US |
