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Parenting a Child with a Disability: A Review of Caregivers’ Needs in India and Service Implications

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Birth Defects in India

Abstract

Birth defects and developmental disabilities are highly disabling conditions of childhood. Parents are primary caregivers for children with disabilities. Caregivers’ needs are primarily documented from industrialized countries. This article documents the studies on medical and social sector service needs of caregivers of children with disabilities in India. As compared to high-income countries, literature on caregivers’ needs is limited. The review identified 22 studies on needs of caregivers of children with locomotor and intellectual disability out of which 7 were conducted in India. Majority of the data were from qualitative inquiry of challenges of caregiving. The review identified that caregivers had inadequate information of the condition, its prognosis and management. Lack of teaching caregivers for managing activities of daily living of the child and guidance on schooling were highlighted as severe challenges in the available literature. Caregiver needs arose from the time of diagnosis, with caregivers confronting difficulties in accessing medical care and rehabilitation therapies, and in negotiating with school and vocational services. These challenges were compounded with economic difficulties. These needs arose from limited coordination between health care and social support service providers. The findings of this and other studies provided valuable inputs on the need for integrated, comprehensive care for children with disabilities in India.

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Authors and Affiliations

  1. State Program Manager, Global Fund supported project on Psychosocial Counseling of People with Drug Resistant Tuberculosis, Tata Institute of Social Sciences, Mumbai, India

    Charuta Gokhale

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  1. Charuta Gokhale
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Editors and Affiliations

  1. Birth Defects and Childhood Disability Research Centre, Pune, India

    Anita Kar

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Gokhale, C. (2021). Parenting a Child with a Disability: A Review of Caregivers’ Needs in India and Service Implications. In: Kar, A. (eds) Birth Defects in India. Springer, Singapore. https://doi.org/10.1007/978-981-16-1554-2_15

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  • DOI: https://doi.org/10.1007/978-981-16-1554-2_15

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  • Publisher Name: Springer, Singapore

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  • Online ISBN: 978-981-16-1554-2

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