School-aged Children with Down Syndrome in Galle, Sri Lanka: Relationship between Level of Disability, Resource Use and Caregiver Burden

Abstract

Aim: We assessed the relationship between the level of disability amongst school-aged children with Downs Syndrome and overall caregiver burden, and the potential moderating effects of social support and external service access on the caregiver/child relationship. Methods: Caregivers were recruited to complete the Caregiver Priorities and Child Health Index of Life with Disabilities (CP-CHILD) assessment and the Caregiver Difficulties Scale (CDS) and answered questions regarding resource use. A subset of 15 surveyed caregivers were also invited to participate in semi-structured interviews. Regression analyses were used to investigate the impact of resource usage on the association between level of disability and caregiver burden. Results: Lower perceived levels of child disability were related to less caregiver burden. Thirty-seven percent of caregivers reported receiving assistance from external supports. The relationship between the child’s level of disability and caregiver burden was attenuated by family support for caregiving and school attendance in a general class in a general school. Conclusions and Implications: External supports reduce caregiver burden but may not be available to many caregivers.