Survey Study of Resource Needs, Availability and Use Amongst Children with Down Syndrome and their Caregivers in Galle, Sri Lanka
May 15, 2017 - September 30, 2017
Within Sri Lanka, Down Syndrome (DS) is the most commonly identified aneuploidy in children, with a prevalence of 76.3% amongst patients with chromosomal anomalies in a 2015 study. This project intends to utilize information regarding existing gaps amongst formal programs, interventions and infrastructure within Galle, Sri Lanka and its impact on caregiver burden for caregivers of children aged 5-12 years with DS. This study will explore the extent to which external services and social supports act as moderators to the relationship between the level of disability of the child and caregiver burden. This study will conduct a survey of caregivers of children with DS through a mixed-methods approach by employing 125 surveys to caregivers and then randomly selecting 15 — 20 caregivers within the sample to qualitatively interview regarding their experiences with external services and social supports associated with DS. To recruit participants to the study, we will be partnering with faculty members of the University of Ruhuna, to contact the Director of Special Needs for the district and local social service workers to receive permission and get in touch with primary caregivers of children with DS within local schools in the Galle region to carry out the surveys and interviews. For these surveys, we will be utilizing previously utilized tools including the CPCHILD and CDS surveys, and we will be inputting results into REDCap, and later analyzing data using descriptive statistics and linear regression.