Proportion and Causes of Delayed Initiation of Occupational Therapy Among Children With Cerebral Palsy Receiving Care at Ubuntu Life Foundation in Maai Mahiu, Kenya

Abstract

Background National cerebral palsy registrations suggest that cerebral palsy (CP) prevalence is around 1.8–2.3 cases per 1000 children worldwide. In Sub-Saharan Africa, the estimated prevalence of CP is 2.9 (2.4–3.6) per 1000 children. Paediatric occupational therapy (OT) focuses on strengthening the capacity to play and learn in children with CP which is critical for their growth and independence. Cognitive, physical, and social abilities, as well as posture and fine motor skills, can all be improved with optimal occupational therapy; however, this intervention should begin early and should be individualized to meet patients' goals. The findings of this study will guide interventions to strengthen occupational therapy services for children with cerebral palsy. Study Objectives To determine the proportion of children with cerebral palsy receiving care at Ubuntu Life Foundation who are initiated on occupational therapy more than 6 months after diagnosis. To describe causes of delay in initiation of occupational therapy among children with cerebral palsy receiving care at Ubuntu Life Foundation and to determine the adequacy of occupational therapy received by children with cerebral palsy at Ubuntu Life Foundation based on the number of sessions per week and the number of hours per session. Methodology A mixed-method study approach was applied, using in-depth interviews for the qualitative aspect and a retrospective cohort method. Only children whose parents/guardians provided consent after getting information about the study were enrolled and allocated study numbers. A master study register was created. Data were obtained using a medical abstraction form on participants’ socio-demographic factors as well as clinical characteristics. Data Analysis Quantitative data was imported into R software version 4.1.2 for analysis. Continuous variables were summarized using means and standard deviations or medians and interquartile ranges. Categorical variables were summarized using frequencies and proportions. Qualitative data was analyzed using manual thematic analysis. Results Out of 85 children, 52 (61%) were males, 39 (46%) were aged below 4 years, and 32 (38%) were 4-7 years. Fifty-six (66%) had a GMFCS score of class IV-V and the median duration of attending OT services was 3.2 years (IQR 2.6, 4.0). The proportion of delay in the initiation of OT services was 41% (95% CI 31%, 52%). The majority of children had received inadequate OT services in terms of length of OT sessions at 61.2% and in the number of sessions at 56.5%. The causes of delay in the initiation of OT services were lack of knowledge of CP among parents, and lack of community sensitization on CP. Caregivers reported a lack of social and economic support, negative attitudes towards CP and denial that the child has CP. Other causes of delay included a lack of adequate OT facilities and late diagnosis. Delay in seeking OT services remain high among children with cerebral palsy. Children with higher GMFCS scores are more likely to receive adequate OT services compared to those with lower scores. Causes of delay in seeking OT services include lack of social and economic support, late diagnosis, and lack of awareness among caregivers