Bryant, LD orcid.org/0000-0002-1972-7395, Ahmed, S orcid.org/0000-0003-4212-0388, Ahmed, M et al. (2 more authors) (2011) 'All is done by Allah'. Understandings of Down syndrome and prenatal testing in Pakistan. Social Science & Medicine, 72 (8). pp. 1393-1399. ISSN 0277-9536
Abstract
Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the 'will of God' was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more 'scientific worldview' of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2011, Elsevier. This is an author produced version of a paper published in Social Science and Medicine. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | Down Syndrome; Female; Great Britain; Humans; Islam; Male; Pakistan; Pregnancy; Pregnancy Complications; Prenatal Diagnosis; Q-Sort; Religion and Medicine |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Psychiatry and Behavioural Sciences (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 28 Aug 2013 14:31 |
Last Modified: | 11 Jan 2021 14:37 |
Published Version: | http://dx.doi.org/10.1016/j.socscimed.2011.02.036 |
Status: | Published |
Publisher: | Elsevier |
Identification Number: | 10.1016/j.socscimed.2011.02.036 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:75968 |