Understandings of Down's syndrome: a Q methodological investigation

Social Science & Medicine
Louise D BryantJenny Hewison

Abstract

Down's syndrome has been, and continues to be, a central focus of prenatal testing technology. However, there has been surprisingly little examination of how parental understandings of the condition relate to prenatal testing choices. This study, carried out at the University of Leeds, uses Q methodology to identify 'competing equivalent stories' of Down's syndrome and to highlight the shared and distinct themes within these stories. Seventy-six people were selected as being likely to represent a diverse range of views about Down's syndrome, approximately half of whom had some known experience or expertise related either to the condition or to prenatal testing. The participants were asked to Q sort 50 propositions about Down's syndrome that were selected to reflect different views about the condition in terms of its impact on the affected person, on families with an affected child, and on society. Using Principal Components Analysis, five statistically independent factors were extracted that reflected a range of views towards, and experiences of, people with Down's syndrome. Despite a virtual consensus about the rights of existing people with Down's syndrome to healthcare, an education, and inclusion in their community, there w...Continue Reading

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