Healthcare Costs and Financial Burden Among Informal Caregivers of Children with Down Syndrome in Karnataka, India: A Cross-Sectional Study

Background: Parents of children with Down syndrome (DS) often face greater challenges due to the need for specialized childcare and treatment, which incurs significant and sustained costs. The objective of the study was to identify the direct healthcare costs, direct education and living cost, and financial burden associated with caregiving for children with DS. Methods: A cross-sectional study was conducted in special schools in six districts of Karnataka where caregivers of children with medically diagnosed DS (0-18 years) were recruited. Using multistage sampling, a sample of 400 was recruited for the study. Results: The majority of the spending was out-of-pocket expenditure. Caregivers had to bear additional costs associated with caring for hospitalized children. Four-fifth participants reported that they spend more than INR 1000 yearly to consult private practitioners, about 95% spend more than INR 1000 to consult physicians in a hospital and 94% spend more than INR 1000 to consult specialists. Apart from these, there are out-of-pocket expenses for medications, other therapies and rehabilitations. Conclusion: Considering the absence of or inadequate health insurance cover, healthcare spending is mostly out-of-pocket. Furthermore, with meagre income, healthcare cost, special education, rehabilitation and other expenses for managing children with DS adds financial strain on the family. These findings suggest the need for future assessment of healthcare and other costs caring for DS children in comparison to children without DS and with other disabilities.