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Background  Stillbirth after 28 weeks gestation affects between 1.3–8.8 per 1000 births in high-income countries. The majority of stillbirths in this setting occur in women without established risk factors. Identification of risk factors which could be identified and managed in pregnancy is a priority in stillbirth prevention research. This study aimed to evaluate women’s experiences of fetal movements and how these relate to stillbirth.    Methods  An international internet-based case–control study of women who had a stillbirth ≥28 weeks’ gestation within 30 days prior to completing the survey ( n  = 153) and women with an ongoing pregnancy or a live born child ( n  = 480). The online questionnaire was developed with parent stakeholder organizations using a mixture of categorical and open–ended responses and Likert scales. Univariate and multiple logistic regression was used to determine crude (unadjusted) and adjusted odds ratios (aOR) with 95% confidence intervals (CI). Summative content analysis was used to analyse free text responses.    Results  Women whose pregnancy ended in stillbirth were less likely to check fetal movements (aOR 0.54, 95% CI 0.35–0.83) and were less likely to be told to do so by a health professional (aOR 0.55, 95% CI 0.36–0.86). Pregnancies ending in stillbirth were more frequently associated with significant abnormalities in fetal movements in the preceding two weeks; this included a significant reduction in fetal activity (aOR 14.1, 95% CI 7.27–27.45) or sudden single episode of excessive fetal activity (aOR 4.30, 95% CI 2.25–8.24). Cases described their perception of changes in fetal activity differently to healthy controls e.g. vigorous activity was described as “frantic”, “wild” or “crazy” compared to “powerful” or “strong”.    Conclusions  Alterations in fetal activity are associated with increased risk of stillbirth. Pregnant women should be educated about awareness of fetal activity and reporting abnormal activity to health professionals.    Electronic supplementary material  The online version of this article (10.1186/s12884-017-1555-6) contains supplementary material, which is available to authorized users.

Stillbirth is associated with perceived alterations in fetal activity – findings from an international case control study