Dataset Information

Considering medical risk information and communicating values: A mixed-method study of women's choice in prenatal testing.

ABSTRACT:

Introduction

Nowadays, an important decision for pregnant women is whether to undergo prenatal testing for aneuploidies and which tests to uptake. We investigate the factors influencing women's choices between non-invasive prenatal testing (NIPT) and invasive prenatal tests in pregnancies with elevated a priori risk of fetal aneuploidies.

Methodology

This is a mixed-method study. We used medical data (1st Jan 2015-31st Dec 2015) about women participating in further testing at Fetomaternal Medical Center at Helsinki University Hospital and employed Chi-square tests and ANOVA to compare the groups of women choosing different methods. Multinomial logistic regressions revealed the significant clinical factors influencing women's choice. We explored the underlying values, beliefs, attitudes and other psychosocial factors that affect women's choice by interviewing women with the Theory of Planned Behavior framework. The semi-structured interview data were processed by thematic analysis.

Results

Statistical data indicated that gestational age and counseling day were strong factors influencing women's choice. Interview data revealed that women's values and moral principles on pregnancy and childbirth chiefly determined the choices. Behavioral beliefs (e.g. safety and accuracy) and perceived choice control (e.g. easiness, rapidness and convenience) were also important and the major trade-offs happened between these constructs.

Discussion

Values are the determinants of women's choice. Service availability and convenience are strong factors. Medical risk status in this choice context is not highly influential. Choice aids can be developed by helping women to identify their leading values in prenatal testing and by providing lists of value-matching test options and attributes.

SUBMITTER: Chen A

PROVIDER: S-EPMC5371284 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Publications

Considering medical risk information and communicating values: A mixed-method study of women's choice in prenatal testing.

Chen An A Tenhunen Henni H Torkki Paulus P Heinonen Seppo S Lillrank Paul P Stefanovic Vedran V

PloS one 20170329 3

<h4>Introduction</h4>Nowadays, an important decision for pregnant women is whether to undergo prenatal testing for aneuploidies and which tests to uptake. We investigate the factors influencing women's choices between non-invasive prenatal testing (NIPT) and invasive prenatal tests in pregnancies with elevated a priori risk of fetal aneuploidies.<h4>Methodology</h4>This is a mixed-method study. We used medical data (1st Jan 2015-31st Dec 2015) about women participating in further testing at Feto ...[more]

PMID: 28355226

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Project description:BackgroundNon-invasive prenatal testing (NIPT) can be used to accurately detect fetal chromosomal anomalies early in pregnancy by assessing cell-free fetal DNA present in maternal blood. The rapid diffusion of NIPT, as well as the ease and simplicity of the test raises concerns around informed decision-making and the potential for routinization. Introducing NIPT in a way that facilitates informed and autonomous decisions is imperative to the ethical application of this technology. We approach this imperative by systematically reviewing and synthesizing primary qualitative research on women's experiences with and preferences for informed decision-making around NIPT.MethodsWe searched multiple bibliographic databases including Ovid MEDLINE, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), and ISI Web of Science Social Sciences Citation Index (SSCI). Our review was guided by integrative qualitative meta-synthesis, and we used a staged coding process similar to that of grounded theory to conduct our analysis.ResultsThirty empirical primary qualitative research studies were eligible for inclusion. Women preferred to learn about NIPT from their clinicians, but they expressed dissatisfaction with the quality and quantity of information provided during counselling and often sought information from a variety of other sources. Women generally had a good understanding of test characteristics, and the factors of accuracy, physical risk, and test timing were the critical information elements that they used to make informed decisions around NIPT. Women often described NIPT as easy or just another blood test, highlighting threats to informed decision-making such as routinization or a pressure to test.ConclusionsWomen's unique circumstances modulate the information that they value and require most in the context of making an informed decision. Widened availability of trustworthy information about NIPT as well as careful attention to the facilitation of counselling may help facilitate informed decision-making.Trial registrationPROSPERO 2018 CRD42018086261 .

Project description:BACKGROUND:Population-based prenatal screening has become a common and widely available obstetrical practice in majority of developed countries. Under the patient autonomy principle, women should understand the screening options, be able to take their personal preferences and situations into account, and be encouraged to make autonomous and intentional decisions. The majority of the current research focuses on the prenatal screening uptake rate, women's choice on screening tests, and the influential factors. However, little attention has been paid to women's choice-making processes and experiences in prenatal screening and their influences on choice satisfaction. Understanding women's choice-making processes and experiences in pregnancy and childbirth is the prerequisite for designing women-centered choice aids and delivering women-centered maternity care. This paper presents a pilot study that aims to investigate women's experiences when they make choices for screening tests, quantify the choice-making experience, and identify the experiential factors that affect women's satisfaction on choices they made. METHOD:We conducted a mixed-method research at Helsinki and Uusimaa Hospital District (HUS) in Finland. First, the women's choice-making experiences were explored by semi-structured interviews. We interviewed 28 women who participated in prenatal screening. The interview data was processed by thematic analysis. Then, a cross-sectional self-completion survey was designed and implemented, assessing women's experiences in choice-making and identifying the experiential factors that influence choice satisfaction. Of 940 distributed questionnaires, 185 responses were received. Multivariable linear regression analysis was used to detect the effects of the variables. RESULTS:We developed a set of measurements for women's choice-making experiences in prenatal screening with seven variables: activeness, informedness, confidence, social pressure, difficulty, positive emotion and negative emotion. Regression revealed that activeness in choice-making (??=?0.176; p?=?0.023), confidence in choice-making (??=?0.388; p?<?0.001), perceived social pressure (??=?-?0.306; p?<?0.001) and perceived difficulty (??=?-?0.274; p?<?0.001) significantly influenced women's choice satisfaction in prenatal screening. CONCLUSIONS:This study explores the experiential dimension of women's choice-making in prenatal screening. Our result will be useful for service providers to design women-centered choice environment. Women's willingness and capabilities of making active choices, their preferences, and social reliance should be well considered in order to facilitate autonomous, confident and satisfying choices.

Project description: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.

Project description:Prenatal genetic testing guidelines recommend providing patients with detailed information to allow informed, preference-based screening and diagnostic testing decisions. The effect of implementing these guidelines is not well understood.To analyze the effect of a decision-support guide and elimination of financial barriers to testing on use of prenatal genetic testing and decision making among pregnant women of varying literacy and numeracy levels.Randomized trial conducted from 2010-2013 at prenatal clinics at 3 county hospitals, 1 community clinic, 1 academic center, and 3 medical centers of an integrated health care delivery system in the San Francisco Bay area. Participants were English- or Spanish-speaking women who had not yet undergone screening or diagnostic testing and remained pregnant at 11 weeks' gestation (n?=?710).A computerized, interactive decision-support guide and access to prenatal testing with no out-of-pocket expense (n?=?357) or usual care as per current guidelines (n?=?353).The primary outcome was invasive diagnostic test use, obtained via medical record review. Secondary outcomes included testing strategy undergone, and knowledge about testing, risk comprehension, and decisional conflict and regret at 24 to 36 weeks' gestation.Women randomized to the intervention group, compared with those randomized to the control group, were less likely to have invasive diagnostic testing (5.9% vs 12.3%; odds ratio [OR], 0.45 [95% CI, 0.25-0.80]) and more likely to forgo testing altogether (25.6% vs 20.4%; OR, 3.30 [95% CI, 1.43-7.64], reference group screening followed by invasive testing). Women randomized to the intervention group also had higher knowledge scores (9.4 vs 8.6 on a 15-point scale; mean group difference, 0.82 [95% CI, 0.34-1.31]) and were more likely to correctly estimate the amniocentesis-related miscarriage risk (73.8% vs 59.0%; OR, 1.95 [95% CI, 1.39-2.75]) and their estimated age-adjusted chance of carrying a fetus with trisomy 21 (58.7% vs 46.1%; OR, 1.66 [95% CI, 1.22-2.28]). Significant differences did not emerge in decisional conflict or regret.Full implementation of prenatal testing guidelines using a computerized, interactive decision-support guide in the absence of financial barriers to testing resulted in less test use and more informed choices. If validated in additional populations, this approach may result in more informed and preference-based prenatal testing decision making and fewer women undergoing testing.clinicaltrials.gov Identifier: NCT00505596.

Project description:BackgroundWomen can choose from a range of contraceptive methods that differ in important ways. Inadequate decision support may lead them to select a method that poorly fits their circumstances, leading to dissatisfaction, misuse, or nonuse. Decision support interventions, such as decision aids, may help women choose a method of contraception that best fits their personal circumstances. To guide future decision aid development, we aim to summarize the attributes of contraceptive methods included in available decision aids as well as surveys and interviews of women actively choosing a contraceptive method.MethodsWe conducted a systematic review to identify attributes of contraceptive methods that may be important to women when engaging in this decision making process. We performed a database search of MEDLINE/PubMed, Ovid EMBASE, OVID CENTRAL, Ovid PsycInfo, EBSCO CINAHL, Popline, and Scopus from 1985 until 2013 to identify decision aids, structured interviews and questionnaires reporting attributes of contraceptive options that are of importance to women. A free-text internet search was also performed to identify additional decision support tools. All articles and tools were reviewed in duplicate for inclusion, and a summary list of attributes was compiled.ResultsWe included 20 surveys, 1 semistructured interview report and 19 decision aids, reporting 32 unique attributes. While some attributes were consistently included in surveys/interviews and decision aids, several were included more often in decision aids as opposed to surveys/interviews (e.g., STI prevention, noncontraceptive benefits, how the method is used, requirement of a healthcare provider), and vice versa (e.g., a woman's vicarious experience with contraceptive methods). Key attributes mentioned in both surveys/interviews and decision aids include efficacy (29 total mentioned) and side effects/health risks (28 total mentioned). While a limited number of decision support tools were formally evaluated, many were not rigorously studied.ConclusionsMany attributes were identified as potentially important to women choosing a method of contraception, but these were inconsistently included in the reviewed resources. Formal evaluation of decision support tools for contraceptive choice and involvement of users in the development process may lead to more user-centered design and implementation.

Project description:BackgroundPrenatal genetic testing, in particular non-invasive prenatal testing (NIPT), as well as screening for risks associated with pregnancy, and counseling, play pivotal roles in reproductive healthcare, offering valuable information about the health of the fetus to expectant parents. This study aims to delve into the perspectives and experiences of women considering genetic testing and screening during pregnancy, focusing on their decision-making processes and the implications for informed consent.MethodsA nationwide qualitative study was conducted in Switzerland, involving in-depth interviews with women who were 1 to 2 years post-partum, covered by basic compulsory Swiss insurance, including women with a migration background. Thematic analysis was employed to identify key themes and patterns in the data.ResultsThe findings underscore the significance of effective communication during prenatal counseling, suggesting that healthcare providers could not only convey technical information but also support women in their decision-making processes. Women need comprehensive information about genetic testing and its implications, as well as the reasons for screening during pregnancy, as there might be a need to bridge knowledge gaps and clarify misconceptions. Furthermore, the study highlights the multifaceted nature of decision-making, with women considering factors such as uncertainty, values, emotional responses, and societal support systems. The concept of acceptance emerged as a crucial theme, with some women expressing their readiness to love and accept their child, regardless of genetic anomalies or disabilities.ConclusionThis study offers valuable insights into the perspectives and needs of women regarding prenatal genetic testing, screening, and counseling in Switzerland. It underscores the importance of enhancing the clinical interaction and informed consent process by providing comprehensive information, addressing misconceptions, and supporting women in decision-making about pregnancy management and the management of the child's health, following prenatal genetic testing, including NIPT. These findings can inform healthcare providers and policymakers in improving the quality of prenatal counseling, ensuring informed consent, and supporting women in making well-informed and meaningful decisions about genetic testing, and on the use of screening during pregnancy.

Dataset Information

Considering medical risk information and communicating values: A mixed-method study of women's choice in prenatal testing.

Introduction

Methodology

Results

Discussion

Publications

Considering medical risk information and communicating values: A mixed-method study of women's choice in prenatal testing.

Similar Datasets

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