Use, access and care giver perceptions about rehabilitation Services by children with cerebral palsy receiving care at Mulago and Kawempe National Referral Hospitals, Uganda

Abstract

Background: Cerebral Palsy is one of the most prevalent childhood disabilities, affecting approximately 17 million people worldwide. This research was conducted to assess the use, access and caregiver perceptions for cerebral palsy rehabilitation services in Uganda. Methods: This was a cross-sectional mixed methods study conducted at Kawempe and Mulago National Referral Hospitals. Quantitative data was collected from children with cerebral palsy and their caregivers to assess the use, access and perceptions of rehabilitation services. The caretakers’ perceptions were further explored qualitatively through focused group discussions and in-depth interviews. Results: The study recruited 422 children of whom the majority were between the ages of 2 to 5 years 244 (58%) and were males 241 (57%). Three hundred ninety-seven participants (94%) were found to use CP rehabilitation services with physiotherapy 373 (88%), occupational therapy 198 (47%) and assisted devices 196 (46%) as the commonly used services. The participant perceptions were however varied with a significant proportion expressing a strong belief in the effectiveness of rehabilitation (Mean 84±17) and an equal proportion viewing these services as a waste of time (Mean 87±24). The perceived barriers to access and use of these services included financial and time constraints, transport and access limitations, stigma and negative community attitude, caregiver support limitations and emotional and social isolation while perceived facilitators were peer support, visible improvement and trusted health facilities. Conclusion: The study revealed a high level of use of cerebral palsy rehabilitation services (94%), although caretakers have mixed perceptions with some regarding it effective while others calling it a waste of time. There is need to address the social, economic, and emotional barriers to access and use through community outreaches, psychosocial support, and structural reforms.