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‘It made you think about your opinion’ -Women's perception of a web-based decision aid concerning screening for fetal anomalies
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background:All pregnant women in Sweden are offered amid-trimester ultrasound examination as part of antenatal care. It is free ofcharge and very few women decline. Despite efforts to provide information,research shows that women’s choice of prenatal screening is often not based oninformed decisions. Objectives:To investigate the potential of a web-baseddecision aid (DA) concerning screening for fetal anomalies to initiate aprocess of reflection and conscious decision-making in pregnant women. Methods: Theweb-based DA consisted of four modules: ‘Facts about fetal diagnostics’,‘Likelihood of anomalies’, ‘Expectant parents’ stories’, and the interactive‘Worksheets’. Seventeen women with access to the DA were interviewed, eleven who opted to usethe DA and six who did not. Data were analysed by systematic text condensation. Results: Women appreciated the decisional aid for being easilyaccessible and emphasised the importance of a reliable source. The DA helpedthem to clarify their own standpoints and engaged their partner in the decision-makingprocess. Reading the expectant parents’ stories seemed especially instrumentalin making women more aware of their own standpoint. Women described that the DAenhanced their awareness that participating in prenatal screening anddiagnostics was a conscious choice. Women who chose not to use the web-based DAwhen offered believed they already had sufficient knowledge to make a decisionabout the different tests. Conclusions: TheDA was able to initiate a process of conscious decision-making in pregnantwomen as a result of their interaction with the tool. Practical Implications: A web-based DA has low costs, is convenientlyavailable to a population with Internet access and can be used on one’s ownterms. The DAs ability to improve awareness of the need to make a consciouschoice showed that this might be a feasible tool for sharing information duringpregnancy.

Keyword [en]
Decision aid, genetic screening, informed choice, pregnancy ultrasound
National Category
Other Clinical Medicine
Research subject
Obstetrics and Gynaecology
Identifiers
URN: urn:nbn:se:uu:diva-221140OAI: oai:DiVA.org:uu-221140DiVA: diva2:707845
Available from: 2014-03-25 Created: 2014-03-25 Last updated: 2014-04-29
In thesis
1. Pregnancy Ultrasound Detecting Soft Markers – the Challenge of Communicating Risk Figures
Open this publication in new window or tab >>Pregnancy Ultrasound Detecting Soft Markers – the Challenge of Communicating Risk Figures
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis focuses on expectant parents’ experiences and needs when soft makers are detected at mid-trimester ultrasound, resulting in an unexpected assessment of risk for fetal anomalies. The thesis also describes the prevalence of ultrasonographic fetal soft markers and the incidence of Down syndrome in a low-risk population of 10,535 pregnant women with a total of 10,710 fetuses, as well as the risk of invasive prenatal diagnostics in conjunction with the detection of soft markers. Finally, the thesis aims to explore the value of a web-based patient decision aid (DA) in facilitating informed decision making regarding routine fetal screening for anomalies and the fathers’ role in decision making regarding prenatal screening.

A prospective observational study was conducted between 2008–2011 to investigate the prevalence of ultrasonographic fetal soft markers at second trimester screening. During this time period, 12 women and 17 men were interviewed about their experience when soft markers were detected. Based on the results of these interviews, a web-based decision aid (DA) to enhance expectant parents’ decision-making concerning fetal screening was developed and a trial initiated to test its utility. Interviews were conducted with 17 women who received access to the DA, 11 who had chosen to use the DA and six who had not used it. All interview studies were analysed using systematic text condensation (STC) developed by Malterud.

Soft markers were detected in 5.9% of the fetuses at mid-trimester ultrasound, whereof 5.1% were isolated. All soft markers showed a positive likelihood ratio (LR+) for DS; however, the association was only statistically significant for the collapsed category ‘any marker’ (isolated, multiple or combined with anomaly), not for isolated markers. An almost 24-fold increase of invasive diagnostic testing was shown in all women, including those with a low estimated risk for aneuploidy, i.e. < 1/200 (paper III).

The results from interviews showed that the finding of soft markers created much anxiety and indicated that both women and men lacked awareness of the potential of the ultrasound examination (papers I and II). The results also showed that the men were actively engaged in decision making not only by supporting their partners, but also considered their own values and needs regarding these issues (paper II). It was also evident that women wanted their partners to be engaged in decisions regarding fetal diagnostics (papers I and IV).

The web-based patient DA was able to initiate a process of conscious decision making in pregnant women, as a result of their interaction with the tool. The DA allowed for clarification of women’s thoughts and priorities and helped them to understand the significance of the screening result and providing a basis for making informed decisions regarding fetal screening (paper IV).

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2014. 80 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 985
Keyword
Pregnancy, Ultrasound, Soft markers, Prenatal, Screening, Fathers, Informed decision making, Decision aid.
National Category
Other Medical Sciences
Research subject
Obstetrics and Gynaecology
Identifiers
urn:nbn:se:uu:diva-221142 (URN)978-91-554-8909-0 (ISBN)
Public defence
2014-05-08, Universitetshuset sal 9, Biskopsgatan 3, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2014-04-16 Created: 2014-03-25 Last updated: 2014-04-29

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