Resource Needs, Availability and Use Amongst Children with Down Syndrome and their Caregivers in Galle, Sri Lanka

Abstract

Background: Down Syndrome (DS) is the most commonly identified aneuploidy amongst children in Sri Lanka, with a prevalence of 76.3%. This study intended to determine the level of disability of children with DS aged 5-12, level of caregiver burden and impacts of family access to external services and social supports in Galle, Sri Lanka. Methods: A cross-sectional survey and interview study was conducted to determine caregiver burden, the level of disability for children with DS, and their access to social supports and external services. Within the study, 125 caregivers took the Caregiver Priorities and Child Health Index of Life with Disabilities (CP-CHILD) and Caregiver Difficulties Scale (CDS) assessments and 15 participated in interviews. Simple bivariate and multivariable regression were used to determine the impacts of resource usage on the child’s level of disability and caregivers burden. Results: The mean level of disability of children with DS was 64.8 and caregiver burden was 50.2. Positively associated predictors of the level of disability include school, type, caregiver gender and income level. Approximately one-third (36.8%) of caregivers reported receiving assistance from external supports, 20% received government assistance, and 92.8% of caregivers relied on assistance from friends and family. Conclusions: Assistance from external sources and behavior therapy was shown to negatively moderate the relationship between the level of disability of the child and caregiver burden. Future longitudinal research, alongside more resource promotion and creation could improve resource access, disability levels and caregiver burden.