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

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.

scholarly journals Termination of pregnancy following a prenatal diagnosis of Down syndrome: A qualitative study of the decision-making process of pregnant couples

2018 ◽  
Vol 97 (10) ◽  
pp. 1228-1236 ◽  
Author(s):  
Stina Lou ◽  
Kathrine Carstensen ◽  
Olav Bjørn Petersen ◽  
Camilla Palmhøj Nielsen ◽  
Lone Hvidman ◽  
...  
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Prenatal Diagnosis ◽  
Qualitative Study ◽  
Termination Of Pregnancy ◽  
Decision Making Process

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

Termination of pregnancy following a Down Syndrome diagnosis: decision-making process and influential factors in a Muslim but secular country, Turkey

2020 ◽  
Vol 0 (0) ◽  
Author(s):  
Duygu Adiyaman ◽  
Bahar Konuralp Atakul ◽  
Melda Kuyucu ◽  
Alkim Gulsah Sahingoz Yildirim ◽  
Halil Gursoy Pala
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Chromosome Analysis ◽  
Tertiary Hospital ◽  
Influential Factors ◽  
Termination Of Pregnancy ◽  
Decision Making Process ◽  
Muslim Country ◽  
Hospital Data ◽  
Maternal Characteristics

AbstractShort CommunicationsThis study aims to present the termination of pregnancy (TOP) rates and elucidate the decision-making process following a prenatal diagnosis of Trisomy 21 in Turkey.Objectives and MethodsThis retrospective single-center study was conducted with 146 pregnant women between January 2016 and December 2019 in a tertiary hospital. Data on maternal characteristics, sonographic findings, indications for chromosome analysis, and educational, religious, and economic factors that can influence the parental decision process were collected.ResultsThe TOP rate of Down syndrome (DS) in our center was 78.8%. We concluded that maternal age, earlier diagnosis, indication for chromosome analysis, and previous pregnancies had no effect on the TOP decision. On the other hand, not having a minor or a major sonographic sign, employed mothers, middle- and high-income families, and families having a secondary or higher education tended to terminate the pregnancy affected by DS at statistically higher rates.ConclusionsThere are many studies worldwide investigating the TOP preferences for DS. However, there is limited data about TOP rates and influential factors affecting the decision-making process in Muslim countries. This study contributes by clarifying the factors in the decision-making process and elucidating perspectives about TOP in a Muslim country with a unique status: Turkey.

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