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Original Research Articles

Community-Based Screening and Early Intervention for Birth Defects and Developmental Disabilities: Lessons from the RBSK Programme in India

Authors:

Anita Kar ,

Birth Defects and Childhood Disability Research Centre, Pune, IN
About Anita

Anita Kar is a former Professor and Director of the School of Health Sciences at Pune University, India. She is currently the Director of Birth Defects and Childhood Disability Research Centre at Pune. Her research interests are in the field of epidemiology, public health implications of birth defects and developmental disabilities.

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Bhagyashree Radhakrishnan,

School of Health Sciences, Savitribai Phule Pune University, Pune, IN
About Bhagyashree

Bhagyashree Radhakrishnan has completed her MSc. degree in Health Sciences from Savitribai Phule Pune University, India. She is currently a research affiliate at Birth Defects Centre, Pune.

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Trushna Girase,

School of Health Sciences, Savitribai Phule Pune University, Pune, IN
About Trushna

Trushna Girase has completed her MSc. degree in Health Sciences from Savitribai Phule Pune University, India.

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Dhammasagar Ujagare,

School of Health Sciences, Savitribai Phule Pune University, Pune, IN
About Dhammasagar

Dhammasagar Ujagare has completed his MPH degree from the School of Health Sciences, Savitribai Phule Pune University; and is currently a Research Fellow registered for a PhD.

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Archana Patil

Maharashtra State Public Health Department, State Family Welfare Bureau, Pune, IN
About Archana

Dr. Archana Patil, MD, is a public health specialist and Director of Maharashtra State Public Health Department.

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Abstract

Purpose:  The Rashtriya Bal Swasthya Karyakram (RBSK) is an ongoing screening and early intervention programme for children in India. Children with birth defects and developmental disabilities from rural and urban communities are referred for treatment and therapies to early intervention centres located in urban areas. This study primarily aimed at determining caregiver uptake and compliance to referral advice of the RBSK, with the larger goal of determining the utility of the community-based screening and district-based intervention service model for caregivers of children with disabilities.

Method: Three administrative blocks and one municipal corporation area of Pune district, in Maharashtra, were randomly selected. The sample consisted of 115 caregivers of children with disabilities. They were interviewed using a semi-structured questionnaire that investigated uptake of referral advice, treatment outcome, current health status of the child and reasons for noncompliance, three to nine months after the first referral by the RBSK team. 

Results: Sixty-four caregivers were aware of their child’s disability, but most children remained untreated. After screening and referral by the RBSK team, compliance was high for treatable conditions like congenital heart defects. Treatment was discontinued for 83% (24 out of 29) of children with developmental disabilities. Reasons for discontinuation included lengthy waiting time, distance to facility, difficulty in transporting the child, loss of wages, and denial of the child’s disability.

Conclusion and Implications: The results indicated that the RBSK programme provides treatment opportunities for children who are left undiagnosed and untreated in the community. Providing rehabilitation services at district centres is a barrier for service uptake. Alternative models such as early childhood development screening and integrating rehabilitation services at the primary healthcare level may be more feasible to provide services for children with disabilities in India.

How to Cite: Kar, A., Radhakrishnan, B., Girase, T., Ujagare, D. and Patil, A., 2020. Community-Based Screening and Early Intervention for Birth Defects and Developmental Disabilities: Lessons from the RBSK Programme in India. Disability, CBR & Inclusive Development, 31(1), pp.30–46. DOI: http://doi.org/10.5463/dcid.v31i1.890
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Published on 06 Aug 2020.

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