Quality of Life, Treatment seeking Pathways and Out of Pocket Expenditure of parents with children with Autism-Spectrum Disorder (ASD) in South Delhi

Abstract

Autism is a neurodevelopment disorder requiring long term preventive, curative and rehabilitative management of the child.  Taking care of these child leads to parents face various challenges. Lack of awareness, associated stigma, misdiagnosis, and inappropriate management impacts parents' lives in various aspects. Objectives: To assess quality of life of the parents of ASD children, find out various treatment-seeking pathways adopted by them, and estimate out-of-pocket expenditure incurred in childcare. Methodology:  A Cross-sectional mixed method study was conducted for the assessment of quality of life of parents (WHO-QOL BREF), out-of-pocket expenditure incurred, and treatment-seeking pathways opted by parents for the management of the disorder. Results: Quality of life of the parents of ASD children were found to be affected in various domains, however psychological domain was the most influenced. The age of the parents had an impact on the social domain. Delays in the identification of symptoms, confirmation of diagnosis, Lack of availability of treatment services, and non-integration of rehabilitative services were major loopholes in the treatment seeking. The median out-of-pocket expenditure was 16% of the monthly family income. Conclusion and recommendation: Community awareness, sensitization of medical personnel, integration of all services for management and rehabilitation are the keys to a better quality of life for the parents. Financial support through health programs, NGOs, or insurance is a much-needed reform to decrease burden of catastrophic health expenditure.