Barriers to Early Diagnosis, Intervention and Social Integration of Children with Developmental Disabilities: A Qualitative Study from Rural Villages and a Poor Urban Settlement of Bangalore, South India.

Abstract

Purpose: Children with developmental disabilities, if given skilled early intervention, have the potential to lead productive lives and can contribute to the social and economic development of their communities. This study explores the barriers to early diagnosis and intervention for children with developmental disabilities who live in rural and urban areas of Bangalore city, India. Methods: The study was conducted in selected villages of Devanahalli Taluk in Bangalore Rural District, and in Devara Jeevanahalli (DJ Halli), a shanty town in Bangalore city. The qualitative study design consisted of in-depth interviews and focus group discussions (FGDs).Parents of children with developmental disabilities, doctors practising in the area and school teachers were interviewed using a purposive sampling framework. An inductive, data-driven thematic analysis was carried out. Results: The physician-related barriers were identified as lack of skills and understanding of children with developmental disabilities, lack of knowledge and resources, lack of specialist backup services, and communication difficulties with regard to conveying bad news to clients. Parent-related barriers were financial constraints, delay in accepting the diagnosis, and prevalent myths, beliefs and stigma pertaining to disability. The teachers viewed children with special needs as an additional responsibility, and were also apprehensive about the attitudes and interaction of other children at school with children with disabilities.

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