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

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.