Facilitating autonomous, confident and satisfying choices: a mixed-method study of women’s choice-making in prenatal screening for common aneuploidies

Abstract

BackgroundPopulation-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.MethodWe 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.ResultsWe 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 (β = 0.176; p = 0.023), confidence in choice-making (β = 0.388; p < 0.001), perceived social pressure (β = − 0.306; p < 0.001) and perceived difficulty (β = − 0.274; p < 0.001) significantly influenced women’s choice satisfaction in prenatal screening.ConclusionsThis 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.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-1752-y) contains supplementary material, which is available to authorized users.

Women’s experiences of counselling in cases of a screen-positive prenatal screening result

“…Studies conducted in Denmark and Great Britain [ 23 , 24 ] support the idea of mental preparation and the importance of sufficient information, as they found that women had less decisional conflict the better informed they were. A recent study in Finland also supports the importance of informed decision, as women in late pregnancy, with a previous informed decision were more satisfied with their decisions concerning screenings [ 25 ]. Another study found well-informed women to have no more anxiety than their peers [ 24 ], but interestingly in a study by Lalor and Begley [ 19 ], women claimed that it is better not to be too informed beforehand, as extensive information could end up worrying many women for no reason.…”

Increased prenatal detection of 22q11.2 deletion and 22q11.2 duplication after introduction of nationwide prenatal screening for trisomy 21, trisomy 13, and trisomy 18

“…A rise in the proportion of cases detected in the first‐trimester would allow termination at an earlier gestational age, which is associated with lower complication rates 27 . An early diagnosis increases reproductive autonomy, but may also shift the time reference for psychological distress 28‐30 . Additionally, early diagnosis potentially improves outcomes for affected individuals by enabling parents and physicians to offer prophylactic initiatives before and after birth to prevent early childhood morbidity 12 …”

Decision-making factors in prenatal testing: A systematic review

“…In the decision-making process, women confer a great importance to the technical features of the test, in particular accuracy, safety, timing and easiness (Beulen et al, 2015;Carroll et al, 2013;Chen et al, 2017Chen et al, , 2018Farrell et al, 2014, Lewis et al, 2014Lund et al, 2018;Seror et al, 2019;Skutilova, 2015;van Schendel et al, 2016). Some studies show that the most important factors for choosing NIPT are its high detection rate and the absence of physical risks for the fetus, along with the easiness of the procedure, especially for high-risk women (Chen et al, 2017;Lewis et al, 2016).…”

“…Finally, the gestational age at which the test can be performed is another relevant factor (Chen et al, 2017(Chen et al, , 2018.…”

“…Other studies highlight that pregnant women experience social influence from maternity care units and from their partners (Chen et al, 2018), and they seem to consult with family and friends for the NIPT choice more often than their partners do (Watanabe et al, 2017).…”