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

Purpose: The study assessed the relationship between the level of disability amongst school-aged children with Down Syndrome and overall caregiver burden, and the potential moderating effects of social support and external service access on the caregiver/child relationship in Sri Lanka. Method: Caregivers were recruited to complete the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) assessment, the Caregiver Difficulties Scale (CDS), and to answer 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 sources. The relationship between the child’s level of disability and caregiver burden was attenuated by family support for caregiving and by school attendance in a general class in a mainstream public primary school. Conclusion: External sources of support reduce caregiver burden but may not be available to many caregivers.

Duke Scholars

Author Rae Jean Proeschold-Bell Duke Global Health Institute

Author Truls Ostbye Family Medicine and Community Health