Prenatal screening for Down syndrome: women's involvement in decision-making and their attitudes to screening

2009 ◽  
Vol 29 (2) ◽  
pp. 120-128 ◽  
Author(s):  
Valerie Seror ◽  
Yves Ville
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Prenatal Screening

Desirable features in a decision aid for prenatal screening – what do pregnant women and their partners think? A mixed methods pilot study

2020 ◽  
Author(s):  
Titilayo Tatiana Agbadje ◽  
Samira Abbasgholizadeh Rahimi ◽  
Mélissa Côté ◽  
Andrée-Anne Tremblay ◽  
Mariama Penda Diallo ◽  
...  
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Mixed Methods ◽  
Pilot Study ◽  
Pregnant Women ◽  
Technology Acceptance ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Values Clarification ◽  
Quebec City

Abstract Background To help pregnant women and their partners make informed value-congruent decisions about Down syndrome prenatal screening, our team developed two successive versions of a decision aid (DAv2017 and DAv2014). We aimed to assess pregnant women and their partners’ perceptions of the usefulness of the two DAs for preparing for decision making, their relative acceptability and their most desirable features. Methods This is a mixed methods pilot study. We recruited participants of study (women and their partners) when consulting for prenatal care in three clinical sites in Quebec City. To be eligible, women had to: (a) be at least 18 years old; (b) be more than 16 weeks pregnant; or having given birth in the previous year and (c) be able to speak and write in French or English. Both women and partners were invited to give their informed consent. We collected quantitative data on the usefulness of the DAs for preparing for decision making and their relative acceptability. We developed an interview grid based on the Technology Acceptance Model and Acceptability questionnaire to explore their perceptions of the most desirable features. We performed descriptive statistics and deductive analysis. Results Overall, 23 couples and 16 individual women participated in the study. The majority of participants were between 25 and 34 years old (79% of women and 59% of partners) and highly educated (66.7% of women and 54% of partners had a university-level education). DAv2017 scored higher for usefulness for preparing for decision making (86.2 ± 13 out of 100 for DAv2017 and 77.7 ± 14 for DAv2014). For most dimensions, DAv2017 was more acceptable than DAv2014 (e.g. the amount of information was found “just right” by 80% of participants for DAv2017 against 56% for DAv2014). However, participants preferred the presentation and the values clarification exercise of DAv2014. In their opinion, neither DA presented information in a completely balanced manner. They suggested adding more information about raising Down syndrome children, replacing frequencies with percentages, different values clarification methods, and a section for the partner. Conclusions A new user-centered version of the prenatal screening DA will integrate participants’ suggestions to reflect end users’ priorities.

Prenatal screening for Down syndrome: a survey of willingness in women and family physicians to engage in shared decision-making

2011 ◽  
Vol 31 (4) ◽  
pp. 319-326 ◽  
Author(s):  
France Légaré ◽  
Sylvie St-Jacques ◽  
Susie Gagnon ◽  
Merlin Njoya ◽  
Michel Brisson ◽  
...  
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Shared Decision Making ◽  
Prenatal Screening ◽  
Family Physicians ◽  
Shared Decision

Web-based Training for Nurses on Shared Decision-Making and Prenatal Screening for Down Syndrome: a Controlled Trial (Preprint)

2021 ◽  
Author(s):  
Alex Poulin Herron ◽  
Titilayo Tatiana Agbadje ◽  
Sabrina Guay-Bélanger ◽  
Gérard Ngueta ◽  
Geneviève Roch ◽  
...  
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Pregnant Women ◽  
Training Program ◽  
Prenatal Screening ◽  
Intervention Group ◽  
Control Group ◽  
Intention To Use ◽  
Shared Decision ◽  
Web Based

BACKGROUND Background: Nurses provide maternity care and thus play an important role in supporting pregnant women making decisions about prenatal screening for Down syndrome. We developed a web-based shared decision making (SDM) training program for health professionals focusing on Down syndrome screening decisions. OBJECTIVE Objective: We assessed the impact of a SDM training program on nurses’ intention to use a decision aid with pregnant women deciding about prenatal screening for Down syndrome. METHODS Methods: In this 2-arm parallel controlled trial, French-speaking nurses working with pregnant women in the province of Quebec were recruited online by a private survey firm. They were conveniently allocated either to the intervention group (web-based SDM training program that included prenatal screening) or to the control group (web-based training program focusing on prenatal screening alone, with no SDM content). The primary outcome was intention to use a decision aid. Secondary outcomes were psychosocial variables of intention (e.g. social influence), as well as knowledge, satisfaction, acceptability, perceived usefulness and reaction to the pedagogical approach. All outcomes were self-assessed through online questionnaires including space for written comments. No blinding was performed. We used Student's t test and Fisher's exact test to compare continuous and categorical variables between groups. RESULTS Results: Of 57 participants assessed for eligibility, 40 were allocated to the intervention (n=20) or control group (n=20) and 36 (n=18 in each) completed the training program. Mean age of participants was 41 years (SD 9). Most were women (97.5%), Caucasian (95%), clinical nurses (70%), and had completed a baccalaureate degree (65%). Post-intervention, the mean score of intention was 6.3 (5.9; 6.7) for the intervention group and 6.0 (5.42; 6.64) for the control group. The difference in intention score and other psychosocial variables score between groups was not statistically significant. Knowledge scores about SDM were significantly different (79% in the intervention group, 64% in the control group, p=0.009). There was no significant difference in overall satisfaction [4.4 (SD 0.7) in the intervention group and 4.5 (SD 0.9)] in the control group and perceived usefulness [4.6 (SD 0.4) in the intervention group and 4.4 (SD 0.5)] in the control group. Acceptability of the training program showed a statistically significant difference [4.6 (SD 0.4) in the intervention group and 4.3 (SD 0.4) in the control group; p=0.02] as well as reaction to the pedagogical approach [4.7 (SD 0.4) in the intervention group and 4.4 (SD 0.4) in the control group; p=0.02]. Seventeen participants also gave written comments on the training. CONCLUSIONS Conclusions: Nurses’ intention to use SDM in prenatal care is already high, with training or without, but their knowledge about SDM could be improved with SDM training. Our results will inform future strategies to implement shared decision-making among nurses. CLINICALTRIAL Trial Registration: ClinicalTrials.gov NCT04162288; https://clinicaltrials.gov/ct2/show/NCT04162288?term=NCT04162288&draw=2&rank=1

The provision of information and informed decision-making on prenatal screening for Down syndrome: A questionnaire- and register-based survey in a non-selected population

2012 ◽  
Vol 87 (3) ◽  
pp. 351-359 ◽  
Author(s):  
Marleen Schoonen ◽  
Hajo Wildschut ◽  
Marie-Louise Essink-Bot ◽  
Ingrid Peters ◽  
Eric Steegers ◽  
...  
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Prenatal Screening ◽  
Informed Decision ◽  
Informed Decision Making

A qualitative investigation of the decision-making process of couples considering prenatal screening for Down syndrome

2012 ◽  
Vol 32 (1) ◽  
pp. 57-63 ◽  
Author(s):  
Fran E. Carroll ◽  
Amanda Owen-Smith ◽  
Alison Shaw ◽  
Alan A. Montgomery
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Prenatal Screening ◽  
Decision Making Process ◽  
Qualitative Investigation

scholarly journals Routinization of prenatal screening with the non-invasive prenatal test: pregnant women’s perspectives

2021 ◽  
Author(s):  
Karuna R. M. van der Meij ◽  
Annabel Njio ◽  
Linda Martin ◽  
Janneke T. Gitsels-van der Wal ◽  
Mireille N. Bekker ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Pregnant Women ◽  
Prenatal Screening ◽  
Screening Program ◽  
Informed Choice ◽  
Aneuploidy Screening ◽  
Non Invasive ◽  
Fetal Aneuploidy ◽  
Societal Pressure ◽  
Prenatal Test

AbstractDue to the favorable test characteristics of the non-invasive prenatal test (NIPT) in the screening of fetal aneuploidy, there has been a strong and growing demand for implementation. In the Netherlands, NIPT is offered within a governmentally supported screening program as a first-tier screening test for all pregnant women (TRIDENT-2 study). However, concerns have been raised that the test’s favorable characteristics might lead to uncritical use, also referred to as routinization. This study addresses women’s perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose and (personal and societal) perspectives on Down syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was “seeking reassurance” (25.5%), and the main reason to decline was “every child is welcome” (30.6%). The majority of respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.

Impact of prenatal screening on congenital heart defects in neonates with Down syndrome in the US

2021 ◽  
Author(s):  
Stephen A. Hart ◽  
Deipanjan Nandi ◽  
Carl H. Backes ◽  
Clifford L. Cua
Keyword(s):  
Down Syndrome ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Prenatal Screening ◽  
Heart Defects ◽  
The Us

Information about prenatal screening for Down syndrome

2009 ◽  
Vol 77 (2) ◽  
pp. 279-288 ◽  
Author(s):  
Mirjam P. Fransen ◽  
Hajo Wildschut ◽  
Ineke Vogel ◽  
Johan Mackenbach ◽  
Eric Steegers ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Prenatal Screening
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