Decisions About Testing and Termination of Pregnancy for Different Fetal Conditions: A Qualitative Study of European White and Pakistani Mothers of Affected Children |
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Authors: | Shenaz Ahmed Jenny Hewison Josephine M Green Howard S Cuckle Janet Hirst Jim G Thornton |
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Institution: | (1) Leeds Institute of Health Sciences, University of Leeds, Leeds, UK;(2) Department of Health Sciences, University of York, York, UK;(3) Reproductive Epidemiology, University of Leeds, Leeds, UK;(4) School of Healthcare Studies, University of Leeds, Leeds, UK;(5) Division of Obstetrics and Gynaecology, Maternity Department, City Hospital, Nottingham, UK;(6) Leeds Institute of Health Sciences, Academic Unit of Public Health, The University of Leeds, 100 Clarendon Road, Leeds, LS2 9PJ, UK |
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Abstract: | The aim of this study is to explore reasons for and against prenatal testing and termination for a range of conditions in
women from two different ethnic backgrounds. A total of 19 Pakistani and European women in West Yorkshire, UK, who either
had a child with a genetic condition or had terminated a pregnancy for one, completed a questionnaire about their attitudes
regarding prenatal testing and termination for 30 different fetal conditions and were interviewed about their reasons for
their responses. There were more similarities than differences between the Pakistani and European white women. The most important
factor in most women’s decisions about termination of pregnancy was their perception of the quality of the life of a child
with the genetic condition, in particular, whether the child would be “suffering.” This was described as either physical suffering,
as a result of medical treatment, or as emotional suffering, as a result of psychological and/or social factors. These findings
highlight the need for detailed information about the potential quality of life for the child and the child’s family to enable
parents to make informed choices, particularly the extent to which the child is likely to suffer, the nature of such potential
“suffering” and the extent to which the child could lead a “normal” life. The findings also challenge stereotypes about cultural
differences in attitudes about termination of pregnancy. |
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