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.

Carolin Elizabeth George; Gift Norman; Tanya Elizabeth Benjamin; Devashri Mukherjee

doi:10.5463/dcid.v25i4.333

Carolin Elizabeth George ⁽¹⁾, Gift Norman ⁽²⁾, Tanya Elizabeth Benjamin ⁽³⁾, Devashri Mukherjee ⁽⁴⁾

(1) Community Health Department, Bangalore Baptist Hospital, Hebbal, Bellary Road, Bangalore 560024, Karnataka, India,

(2) Community Health Department, Bangalore Baptist Hospital, Bangalore, Karnataka, India,

(3) Colorado State University, Fort Collins, Colorado, United States,

(4) Community Health Department, Bangalore Baptist Hospital, Bangalore, Karnataka, India

https://doi.org/10.5463/dcid.v25i4.333

Issue
Vol. 25 No. 4 (2014): Winter 2014

Submitted
September 14, 2020

Published
December 31, 2014

Keywords:

children with developmental disabilities, childhood disability barriers, inclusive development, CBR, accessing disability care, inclusive education

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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 DevaraJeevanahalli (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 back-up 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 normal children at school with children with disabilities.

Limitations: Although the conditions are more or less similar in the different shanty towns and villages in South India, inclusion of more such settlements and villages using probability sampling would have increased the external validity of the study.

Implications: Better understanding on the part of parents, doctors and teachers can influence rehabilitation policy and practice, thereby facilitating early diagnosis and rehabilitation of children with developmental disabilities.

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Authors

Carolin Elizabeth George

Community Health Department, Bangalore Baptist Hospital, Hebbal, Bellary Road, Bangalore 560024, Karnataka

carolinelizabethj@gmail.com (Primary Contact)

Gift Norman

Community Health Department, Bangalore Baptist Hospital, Bangalore, Karnataka

Tanya Elizabeth Benjamin

Colorado State University, Fort Collins, Colorado

Devashri Mukherjee

Community Health Department, Bangalore Baptist Hospital, Bangalore, Karnataka

Author Biographies

Carolin Elizabeth George, Community Health Department, Bangalore Baptist Hospital, Hebbal, Bellary Road, Bangalore 560024, Karnataka

Dr. Carolin Elizabeth is a specialist in Public Health and works as a Research Consultant at Bangalore Baptist Hospital. Her special interests are in the field of preventive cardiology, disability and rehabilitation. She mentors post-graduate students in research methodology, facilitates and guides research; and lectures medical undergraduates in primary care and family medicine. She has 10 publications in peer reviewed journals.

Gift Norman, Community Health Department, Bangalore Baptist Hospital, Bangalore, Karnataka

Dr. Gift Norman heads the Community Health and Family Medicine Division at Bangalore Baptist Hospital. His special interest is in the field of disability, Community Based Rehabilitation, especially among persons affected by leprosy. He along with his team at the Schieffelin Institute of Health - Research and Leprosy Center, Karigiri, pioneered models for integrating persons affected by leprosy into general community based rehabilitation programs. He also served as a technical consultant in leprosy to American Leprosy Missions (ALM) in India. He has extensive research experience in the field of CBR, public health and epidemiology and has several publications.

Tanya Elizabeth Benjamin, Colorado State University, Fort Collins, Colorado

Tanya Elizabeth Benjamin, BS, OT was initially trained as an occupational therapist from Christian Medical College, Vellore, India. She has spent several years providing occupational therapy services to promote community integration of children with disabilities within a community based rehabilitation service delivery model at Bangalore Baptist Hospital, India. She is now pursuing her M.S in Occupational Therapy at Colorado State University with a keen interest in obtaining mentored research training to improve outcomes assessment of young children's participation at the home, school and community settings.

Devashri Mukherjee, Community Health Department, Bangalore Baptist Hospital, Bangalore, Karnataka

Dr. Devashri has a master’s degree in Public health (epidemiology) from Christian Medical College,Vellore and is currently working as research consultant in Bangalore Baptist Hospital. She has 7 publications in indexed peer reviewed academic journals in the field of public health and family medicine.

1.

George CE, Norman G, Benjamin TE, Mukherjee D. 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. DCIDJ [Internet]. 2014 Dec. 31 [cited 2025 Jun. 2];25(4):61-83. Available from: https://dcidj.uog.edu.et/index.php/up-j-dcbrid/article/view/169

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