ABSTRACT
BACKGROUND: Pregnant women should be able to make autonomous and meaningful decisions about prenatal screening for fetal abnormalities. It remains largely unclear which circumstances facilitate or hinder such a decision-making process. OBJECTIVE: To investigate what conditions Dutch pregnant women and professional experts consider important for autonomous reproductive decision-making in prenatal screening for fetal abnormalities, and the extent to which, according to women, those conditions are met in practice. METHODS: A mixed methods study was conducted in the Netherlands in 2016-2017. A conceptual model was used to interview professional experts (n = 16) and pregnant women (n = 19). Thematic analysis was performed to identify important conditions. Subsequently, a questionnaire assessed the perceived importance of those conditions and the extent to which these were met, in the experience of pregnant women (n = 200). RESULTS: Professional experts stressed the importance of information provision, and emphasized a rational decision-making model. Pregnant women differed in what information they felt was needed, and this depended on the screening decision made. Questionnaire findings showed that women prioritized discussion and consensus with partners. Information about test accuracy and miscarriage risk of invasive follow-up testing was also considered important. Two key conditions were not adequately met, in the experience of women: (1) having information about miscarriage risk; (2) not being directed by health professionals in decision-making. CONCLUSION: According to women, discussion and consensus with partners was considered a highly important condition for an autonomous and meaningful decision-making process. Access to information about safety of testing and ensuring that women are not being directed in their decision-making by health professionals seem to be areas for improvement in prenatal care practice.
