British Minority Parents' Experiences with Children with Down Syndrome in West Yorkshire

British Minority Parents' Experiences with Children with Down Syndrome in West Yorkshire

Mahasin Saleh, Ph.D, MSW



Background / Purpose: Few qualitative studies have focused specifically on the experiences of British Minority parents with children with disabilities and thus the need for additional research is evident. The main research question of this qualitative study was “what are the experiences, challenges, and coping strategies of British Minority parents with children with disabilities?” A major aim of the study is to provide recommendations to improve services for minority families in the region and to share insights from minority parents.

Method: Twenty-three British minority parents with children with Down Syndrome in the Bradford, West Yorkshire area agreed to participate in this study that was approved by a local University Research Ethics Panel. Parents were asked to share their reactions to the diagnosis of their children and their experiences with seeking, accessing and receiving services for their children. Experiences of parental stress and coping strategies were also explored. Parents were asked about any experiences they or their children had with being stigmatized due to their religion and/or ethnicity, and if it was in relation to their children's disability. Not all parents identified their religious affiliation, however, more than half (65%) of the parents identified as Muslim. In terms of heritage parents identified as British Pakistani, British Indian, from Asian countries, from an Arab country, and from Eastern Europe.

Findings and Recommendations: Qualitative content analysis was utilised to examine the interviews. The findings included that parents encountered both positive and negative experiences with various types of medical and health services providers. Some parents reported feeling stigmatized in their communities because of their religion. Overall, parents had positive experiences with charity organizations' education and support services. Parents utilised various coping strategies with faith being a key approach for many Muslim parents. Parents provided specific recommendations for services providers and coping advice for other parents.



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