Understandings of Down's syndrome: A Q methodological investigation

Bryant, Louise D.; Green, Josephine M.; Hewison, Jenny

doi:10.1016/j.socscimed.2006.03.004

Cited by 54 publications

(65 citation statements)

References 26 publications

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“…It is also apparent that education and a relatively good income do not necessarily ameliorate perceptions of burden, lack of parental reward and disadvantage; religion may also not provide a positive resource to those who share this way of thinking. The different viewpoints identified resonate with findings from research in more economically developed countries although the detail of individual responses may be different (Bryant et al, 2006;Gail Landsman, 2009;Lawson, 2006). It is important that those working in …”

Section: Resultsmentioning

confidence: 75%

“…Almost half of the parents in Account 1 expressed favourable attitudes towards abortion for the condition despite relaying positive experiences with their affected child. In the original UK based study no participant who had a close family member with DS expressed such views (Bryant et al, 2006). The difference between the studies may partly reflect the lack of support available for people with DS in Pakistan compared to the UK.…”

Section: Discussionmentioning

confidence: 97%

“…The Q-set for this study had been used previously to explore understandings of DS in a UK based population (Bryant, Green, & Hewison, 2006). From an original collection of 400 statements extracted from a wide range of academic and non-academic sources, 50 items were selected for the Q-set.…”

Section: Introductionmentioning

confidence: 99%

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‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan

Bryant

Ahmed

et al. 2011

Social Science & Medicine

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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 Qsorting 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.

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Section: Resultsmentioning

confidence: 75%

Section: Discussionmentioning

confidence: 97%

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‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan

Bryant

Ahmed

et al. 2011

Social Science & Medicine

Self Cite

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“…As DS is common and carries a burden of ongoing medical management for those affected, it has led to the development of prenatal screening policies in most countries, including SA (Bryant et al 2006). The prevalence of DS in Cape Town (CPT), in the Western Cape, SA, has been estimated as one in 670 live births (Molteno et al 1997).…”

Section: Introductionmentioning

confidence: 99%

Prenatal diagnosis and termination of pregnancy: perspectives of South African parents of children with Down syndrome

2012

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This study aims to evaluate the attitudes of a group of South African parents with a preschool child with Down syndrome (DS) towards prenatal diagnosis (PND) and termination of a Down syndrome-affected pregnancy (TAP). This study employs a qualitative phenomenological approach with the use of semi-structured interviews. Twelve participants were recruited from two state sector hospitals in Cape Town, South Africa. Thematic analysis was used to interpret the data. The participants had a positive attitude towards PND and felt that it was every parent's right to have the option. They considered a benefit of PND the fact that it allowed parents time to prepare for the arrival of a baby with DS. The induced miscarriage risk associated with invasive prenatal testing procedures caused major negative feelings. They were totally opposed to the termination of a Down syndrome-affected pregnancy due to their personal experience, moral, ethical or religious convictions. South African parents of preschool children with Down syndrome are comfortable with PND for Down syndrome; however, they do not support TAP. These findings will provide health care providers with further insight into the motivations behind the decisions their patients make.

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“…Because NIPT, in particular, has the potential to detect many different conditions and genetic variations, some argue that concerns about its "eugenic potential" may be particularly acute [6][7][8]. That said, we focus this commentary on screening for Down syndrome (the reasons for which we offer later).…”

Section: Introductionmentioning

confidence: 99%

Keeping the Backdoor to Eugenics Ajar?: Disability and the Future of Prenatal Screening

Thomas

Rothman

2016

AMA Journal of Ethics

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Understandings of Down's syndrome: A Q methodological investigation

Cited by 54 publications

References 26 publications

‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan

‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan

Prenatal diagnosis and termination of pregnancy: perspectives of South African parents of children with Down syndrome

Keeping the Backdoor to Eugenics Ajar?: Disability and the Future of Prenatal Screening

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