Abstract

BackgroundDown syndrome is a common chromosomal abnormality and prenatal screening can inform parents of the risk of their baby having Down syndrome. Little research has examined how decisions regarding both Down syndrome screening as well as diagnosis are made among women who are currently pregnant and how their decisions are influenced by their social contexts, specifically family and social media, using mixed methods. The study was to test the validity and reliability of a scale that measures pregnant women’s attitudes and decision-making concerning prenatal Down syndrome screening and diagnosis in urban areas of Taiwan.MethodsWe developed an item pool based on a literature review and in-depth interviews with 30 pregnant women recruited at two district hospitals in urban areas. The item pool was reviewed by a panel of experts and then administered to 300 women who had been pregnant for less than 24 weeks and had not received the Down syndrome screening tests. We used item analysis and exploratory factor analysis to validate the scale and test its reliability.ResultsThe initial item pool had 54 items. After the expert review, three items were deleted. After the item analysis, 16 additional items were deleted. Exploratory factor analysis of the remaining items revealed four factors labeled – “Attitudes towards Down syndrome and Screening Tests,” “Important others’ Attitudes towards Down Syndrome,” “Influence of Important Others on Decision-Making,” and “Influence of Social Media on Decision-Making” – and 16 of the remaining items had satisfactory loadings on those factors, explaining 72.0% of the total variance. The Cronbach’s α values of the dimensions ranged between 0.75 and 0.90, demonstrating satisfactory internal reliability.ConclusionsThe scale has satisfactory validity and reliability, and can be used to understand pregnant women’s attitudes and decision-making regarding Down syndrome screening and diagnosis, and to help design tailored consultations for pregnant women in clinical settings.

Highlights

  • Down syndrome is a common chromosomal abnormality and prenatal screening can inform parents of the risk of their baby having Down syndrome

  • When the screening test result is positive, a pregnant woman needs to decide whether to receive further diagnostic tests and possibly terminate her pregnancy if the diagnostic test result is positive [3, 4].A false positive may result in invasive diagnostics or unnecessary anxiety in pregnant women, both of which increase the risk of miscarriage [3, 5, 6]

  • To the best of our knowledge, little research has examined how decisions regarding Down syndrome screening as well as diagnosis are made among women who are currently pregnant but have not yet receiving any Down syndrome screening or diagnostic tests in Taiwan, and how their decisions are influenced by their social contexts, family and social media in other countries

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Summary

Introduction

Down syndrome is a common chromosomal abnormality and prenatal screening can inform parents of the risk of their baby having Down syndrome. The study was to test the validity and reliability of a scale that measures pregnant women’s attitudes and decisionmaking concerning prenatal Down syndrome screening and diagnosis in urban areas of Taiwan. Prenatal screening can inform parents of the risk of their baby having Down syndrome. Invasive diagnostic tests such as Amniocentesis or Chorionic Callus sampling involve chromosomal testing can be performed to confirm Down syndrome in fetuses [2]. Pregnant women often have difficulty deciding whether to receive screening and diagnostic tests [8,9,10], when the decision must be made within a limited time period [6]. A metasynthesis suggested a need for research that focused on examining pregnant women’s experiences and decisionmaking about screening for Down syndrome [13]

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