Improving women’s knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome – development and acceptability of a low literacy decision aid

Smith, Sian K; Cai, Antonia; Wong, Michelle; Sousa, Mariana S.; Peate, Michelle; Welsh, A.W.; Meiser, Bettina; Kaur, Rajneesh; Halliday, Jane; Lewis, Sharon; Trevena, Lyndal; Yanes, Tatiane; Barlow‐Stewart, Kristine; Barclay, Margot

doi:10.1186/s12884-018-2135-0

Cited by 30 publications

(37 citation statements)

References 60 publications

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“…Our study is designed to better identify barriers to informed decision-making regarding prenatal testing and in the ongoing second phase, attempt novel education interventions to improve genetic literacy and patients' confidence in their decisions. Participants in our study indicated that a prenatal testing mobile application would help individuals to acquire the most accurate knowledge in a more accessible way, as suggested by other researchers (Choi & Kim, 2014;Smith et al, 2018;Yee et al, 2014). For example, one of the participants discussed the difficulties of finding trustworthy, easy-to-understand information on the Internet.…”

Section: Discussionsupporting

confidence: 52%

Pregnant Hispanic women's views and knowledge of prenatal genetic testing

Page

Murphey

Aras

et al. 2021

Journal of Genetic Counseling

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Pregnant Hispanic women are underserved with their needs for genetic counseling, despite birth defects remaining the leading cause of infant death in the United States. We present the qualitative findings of a study to understand knowledge and perceptions of prenatal testing in a sample of hard-to-reach underrepresented Hispanic pregnant women in South Texas. The sample for this study was 10 Hispanic pregnant women who were recruited from a high-risk prenatal clinic in South Texas in 2019. The semi-structured interview questions were created based on the researchers' clinical experiences with this population and were designed to examine knowledge and perceptions of participants toward prenatal testing. Analysis of the qualitative data yielded several themes related to prenatal testing: (a) knowledge, (b) confusion, (c) partner's and support persons' opinions, (d) information sharing from providers, (e) psychological benefits, (f) preparation for baby, (g) obstacles, (h) religious influence, and (i) educational tools to assist with understanding. Women's understanding and knowledge of prenatal testing was limited, specifically regarding its purpose, how it works, the benefits, and why it was recommended by their provider. Lack of clarity about why they should take the test and its risks for them and their babies was perceived as something that could impede their acceptance of prenatal testing. All participants agreed that healthcare providers should share more information about prenatal testing in a way that uses 'everyday language' so that they can understand it better. All respondents mentioned that prenatal testing provides information about their baby's health conditions, alleviates their stress and concerns, and psychologically prepares them and their family for what is to come. Identifying ways to increase culturally appropriate education delivered by genetic counselors such as through the adoption of telemedicine and mobile technology can help fill the gap for this underserved population.

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Section: Discussionsupporting

confidence: 52%

Pregnant Hispanic women's views and knowledge of prenatal genetic testing

Page

Murphey

Aras

et al. 2021

Journal of Genetic Counseling

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“…Moreover, maternity health care providers should be aware of women's individualized experiences on prenatal ultrasound examinations and provide appropriate education [45,46]. Thus, antenatal childbirth classes should design information to improve women's genetic literacy on prenatal screen procedures [47,48].…”

Section: Discussionmentioning

confidence: 99%

“…As 29 women in our present study sought health information from the Internet compared to 16 women who attended traditional education classes, it is recommended that effective educational strategies should be considered. These strategies may include decisional aids and interactive computerized information aids, which have been proven to enhance genetic health literacy and reduce decisional conflict [47,48,50]. Importantly, antenatal care nurses should acquire up-to-date knowledge of varying prenatal screening tests including advantages, risks, and costs.…”

Section: Increased Education Regarding Common Prenatal Screen Testsmentioning

confidence: 99%

Understanding Taiwanese Women's Decisional Experiences Regarding Prenatal Screening Procedures And Diagnostics: A Phenomenological Study

Chen

Cheng

2020

Asian Nursing Research

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Purpose: This study sought to understand Taiwanese women's decisional experiences regarding prenatal screening procedures and diagnostics. Methods: A hermeneutic phenomenological design guided semistructured interviews with 33 women who were 36 weeks pregnant. Data were collected between February and October 2016. Verbatim transcripts were analyzed following hermeneutic circle to cocreate an understanding of Taiwanese women's decision-making in prenatal screening and diagnostics. Results: Women's existential experiences were derived from their decision-making process on prenatal screening procedures and diagnostics for chromosomal aneuploidy. These decisional experiences were captured by four theme clusters and eight themes, which were inductively derived from 16 meaning units: (1) accessing health information; (2) considering what was best for my baby; (3) considering family finance; and (4) feeling anxiety posttest. Conclusion: Participants made informed choices on several prenatal screening procedures, ostensibly, based on their personal values and considerations. During the decision-making process, often-cited benefits of genetic screenings were emphasized, but test limitations were often unheeded. A fundamental need for supportive information in decision making was further identified with recommended strategies. Hence, a revision of traditional genetic counseling approaches is recommended. As genomics technologies are increasingly available during antenatal services, women should be sufficiently educated about them to support decision making.

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“…30 Decision aids could potentially improve patient knowledge prior to screening and have been used to improve knowledge for other screening programmes. [31][32][33][34] They could be used to explain the diagnostic test, conditions that could be diagnosed, quantitative information relating to diagnostic accuracy and the risks and benefits of treatment. They could also be used to promote clarification of patients' preferences about the screening and potential consequences to improve patient knowledge.…”

Section: Practice and Policy Implicationsmentioning

confidence: 99%

Patients’ views about screening for atrial fibrillation (AF): a qualitative study in primary care

et al. 2020

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ObjectivesThere has been increased interest in screening for atrial fibrillation (AF) with commissioned pilot schemes, ongoing large clinical trials and the emergence of inexpensive consumer single-lead ECG devices that can be used to detect AF. This qualitative study aimed to explore patients’ views and understanding of AF and AF screening to determine acceptability and inform future recommendations.SettingA single primary care practice in Hampshire, UK.Participants15 participants (11 female) were interviewed from primary care who had taken part in an AF screening trial. A semistructured interview guide was used flexibly to enable the interviewer to explore any relevant topics raised by the participants. Interviews were recorded, transcribed verbatim and analysed using inductive thematic analysis.ResultsParticipants generally had an incomplete understanding of AF and conflated it with other heart problems or with raised blood pressure. With regards to potential drawbacks from screening, some participants considered anxiety and the cost of implementation, but none acknowledged potential harms associated with screening such as side effects of anticoagulation treatment or the risk of further investigations. The screening was generally well accepted, and participants were generally in favour of engaging with prolonged screening.ConclusionsOur study highlights that there may be poor understanding (of both the nature of AF and potential negatives of screening) among patients who have been screened for AF. Further work is required to determine if resources including decision aids can address this important knowledge gap and improve clinical informed consent for AF screening.Trial registration numberISRCTN 17495003.

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Improving women’s knowledge about prenatal screening in the era of non-invasive prenatal testing for Down syndrome – development and acceptability of a low literacy decision aid

Cited by 30 publications

References 60 publications

Pregnant Hispanic women's views and knowledge of prenatal genetic testing

Pregnant Hispanic women's views and knowledge of prenatal genetic testing

Understanding Taiwanese Women's Decisional Experiences Regarding Prenatal Screening Procedures And Diagnostics: A Phenomenological Study

Patients’ views about screening for atrial fibrillation (AF): a qualitative study in primary care

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