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J Community Genet. 2013 Jan;4(1):107-14. doi: 10.1007/s12687-012-0124-y. Epub 2012 Oct 23.

Experiences of parents with a child with Down syndrome in Pakistan and their views on termination of pregnancy.

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1
Leeds Institute of Health Sciences, School of Medicine, University of Leeds, 101 Clarendon Road, Leeds, LS2 9LJ, UK.

Abstract

It has been argued that Down syndrome (DS) is as much a cultural creation as a biomedical condition, yet the majority of research in this area has been conducted in 'Western' cultures. This study explored parents' experiences of their child with DS in Pakistan and their views on abortion for the condition. Thirty mothers and fathers of children with DS took part in qualitative interviews. Transcripts were thematically analysed. Parents used Islamic discourse to frame positive personal meanings of their child's condition. These were contrasted with personal experiences of stigmatisation and rejection by family and community. An ambivalent cultural stereotype was revealed that characterised people with DS as abnormal and objects of pity but also as being closer to God and bringers of good fortune. Views on termination varied, but parents were generally supportive of the availability of abortion for DS due to the social stigmatisation they experienced. The findings reveal how parents negotiated their religious beliefs alongside personal experiences to inform personal views on abortion for DS. Advice to other parents about termination was rooted in Islamic discourse but emphasised pragmatic concerns about the impact of having a family member with intellectual disability in Pakistan.

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