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Negotiating Future Uncertainty: Concerns of Mothers of Children with Down Syndrome in Kashmir, India

Authors:

Bilal Ahmad Khan ,

Department of Social Work, University of Kashmir, J&K, IN
About Bilal Ahmad

Bilal Ahmad Khan is a Doctoral Fellow in the Department of Social Work, University of Kashmir. He has a Masters in Social Work from the same Department. He has worked as a Research Assistant in an ICSSR sponsored project and as a trainer on the Himayat project sponsored by the Ministry of Rural Development of India. His interest areas are developmental disabilities and Families, and Social Work. 

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Wakar Amin Zargar,

Department of Social Work, University of Kashmir, J&K, IN
About Wakar Amin

Dr. Wakar Amin is a faculty member in the Department of Social Work, University of Kashmir. In a career spanning over ten years, he has been involved in training, research and consultations in the area of public health with various governmental and non-governmental institutions. His research areas include Public health, Minority studies and Conflict studies.

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Shabir Ahmad Najar

Centre of Central Asian Studies, University of Kashmir, J&K, IN
About Shabir Ahmad

Shabir Ahmad Najar is Senior Research Fellow (SRF) at Center of Central Asian Studies, University of Kashmir and is working on Informal sector. He has done his Masters in Sociology from University of Kashmir. He has previously worked as a Research Investigator on a project sponsored by the Indian Council of Social Science Research, New Delhi. Besides this he has also worked as a trainer at Indian Institute of Carpet Technology, Srinagar.

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Abstract

Purpose: Down syndrome is developmental disorder that poses unique challenges and implications to families. The present paper is the outcome of a study carried out in Srinagar district of J & K in India, on mothers’ apprehensions about the uncertain future for their children with Down syndrome.

Method: A phenomenographic approach was followed. Purposive sampling technique was used at selected special schools in Srinagar. Mothers of 8 children with Down syndrome who were enrolled in school, participated in the study. The mothers were between 31 and 67 years of age; their children were between 2 and 30 years of age. In-depth interviews were conducted in Urdu and Kashmiri, the local languages. The recorded information was subsequently transcribed and classified into themes.

Results: The key theme that emerged was the participants’ worry about the unpredictable future of their child. Once a child is diagnosed with Down syndrome, parents - especially mothers - recognise that their child’s future may not include a carefree childhood and, at a later date, higher studies, an independent life and marriage.

Conclusion: Mothers of children with Down syndrome experience high levels of stress and often have to make adjustments in their careers, finances and lifestyles. There is a need for training programmes to help parents cope with the problems faced by their children with Down syndrome. Stakeholders in the education sector could help in this regard.

How to Cite: Khan, B.A., Zargar, W.A. and Najar, S.A., 2018. Negotiating Future Uncertainty: Concerns of Mothers of Children with Down Syndrome in Kashmir, India. Disability, CBR & Inclusive Development, 29(1), pp.67–77. DOI: http://doi.org/10.5463/dcid.v29i1.703
Published on 17 Jul 2018.
Peer Reviewed

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