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

Bilal Ahmad Khan, Wakar Amin Zargar, Shabir Ahmad Najar

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.


Keywords


Down syndrome; mothers; special school; Kashmir

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DOI: https://doi.org/10.5463/dcid.v29i1.703



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