SWIRL-Q: Attitudes to stillbirth research in low risk women v1.0
Research type
Research Study
Full title
SWIRL-Q: - Stillbirth: When is risk low? A qualitative study to explore women’s attitudes towards and experiences of participating in stillbirth research in low-risk pregnancies.
IRAS ID
327733
Contact name
Kate Walker
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Research Summary:
The study is titled ‘SWIRL-Q – Stillbirth: When is risk low? A qualitative study to explore women’s attitudes towards and experiences of participating in stillbirth research in low-risk pregnancies’ and took place at the University of Nottingham and University of Manchester between June 2024 and December 2025. Women were asked to complete a short online survey which asked about their understanding of stillbirth as well as their experience of participating in stillbirth research. The study was funded by Wellcome Leap – an advanced research project agency who commissioned 15 research teams from countries around the world to develop studies to help generate new insights into stillbirth prevention, in a project they termed ‘In Utero’. The universities of Nottingham and Manchester were two of the chosen teams, and both undertook studies using MRI (magnetic resonance imaging) during pregnancy to explore more about the function of the placenta.
Sadly, stillbirth, the death of a baby after 24 weeks of pregnancy whilst still in the womb, affects around 1 in 200 pregnancies in the UK each year, and despite advances in medical care these rates are not declining. The UK now has one of the highest stillbirth rates in Europe. In order to try and better understand the wide range of reasons for stillbirth as well as develop tools and technologies to help prevent it, more research is desperately needed. However, in developing the SWIRL study, researchers noted that many doctors and midwives felt uneasy talking to women about the small risk that their baby could die during pregnancy, as they did not wish to cause anxiety or upset them.
We therefore wanted to understand more about women’s experience of taking part in research focused on stillbirth, to explore whether taking part in the study did increase their anxiety as some health professionals feared. We wanted to investigate what families already know about stillbirth, what risk factors they consider are related and what their own risk of stillbirth could be. With this information we were then able to invite them to share with us whether a study researching stillbirth added to their anxiety, and if it did not, why not. We gathered this information using an online survey which collected their responses anonymously. To ensure the patient information provided as well as the online survey were sensitively worded, we asked SANDs – the stillbirth and neonatal death charity, to review these materials and provide any feedback before the study commenced.
A total of 14 women took part in the survey, 12 from the University of Nottingham and two from the University of Manchester. This group of women included those from a range of age groups and ethnicities, and women with a currently healthy pregnancy in addition to women where complications e.g., a small baby had already developed. 93% of them had heard of stillbirth before they took part in the study, and 64% knew someone who had personally experienced stillbirth. For the majority of women, the information they already knew about stillbirth came from TV, social media, or friends and family, and only 29% could recall it ever being mentioned by a health professional during their current or previous pregnancies. The most common risk factors the participants mentioned having knowledge of were smoking, alcohol, drugs and obesity.
86% of women acknowledged that stillbirth is not spoken about as openly as miscarriage, with reasons such as the earlier gestation often felt to be behind this difference. 79% of the participants in SWIRL-Q described feeling worried about the potential of stillbirth happening to them, although only 21% felt that they had a high risk of stillbirth during their pregnancy.
Crucially, 79% of the women who took part in the SWIRL-Q survey felt that taking part in stillbirth focused research did NOT increase their anxiety during pregnancy. Many reported that they found taking part reassuring, as it meant they had more visits with health professionals, more opportunity to have their pregnancy assessed and see their baby on scans, and they felt good knowing they were contributing to important research that may go on to help other families. This information is essential for both health professionals approaching women to take part in stillbirth research as well as patients themselves. This work supports other similar studies which continue to show that despite our reservations, contributing to research on stillbirth can be a positive experience for families and for the majority does not cause significant distress to justify not approaching them during pregnancy.
We wish to extend our thanks to all of the women and their families who took part in the SWIRL-Q study as well as the wider ‘In Utero’ programme of studies, for giving up their time and sharing their precious pregnancies with us. Further study results from the main SWIRL study and the full SWIRL-Q study are awaiting publication during 2026.In order to address the global problem of stillbirth, a research collaboration between 15 universities called 'In Utero' has been created, to understand more about how babies develop during pregnancy and predict when stillbirth might occur. Our project is ‘SWIRL: Stillbirth - When is risk low?’ and women will be invited to take part if they are receiving antenatal care at Nottingham University Hospitals. During the development of the information to give to women considering joining the SWIRL study, many staff felt uneasy about how we describe a study focused on reducing stillbirth to families during pregnancy without creating undue anxiety. We found research regarding participant experience of stillbirth studies was limited, in particular, for families who had not experienced the loss of a baby the literature was sparse on their experiences. We wish to explore what factors encourage/discourage women to take part, and whether their involvement does, as believed, increase their anxiety during pregnancy. We hope by addressing these questions we can encourage and reassure more women and health professionals to take part in stillbirth research. The study will be conducted through an online questionnaire and women who wish to contribute further will be invited to a video interview lasting 30-45 minutes to explore their views in more depth. The study will recruit women from one of three existing studies in the 'In Utero' research collaboration, namely, SWIRL at the University of Nottingham, as well as a study at the University and Manchester. Women will be eligible to take part if they have not previously suffered a second trimester miscarriage or stillbirth. The study will last from recruitment until their interview is complete and will take place virtually from their own home. The study is funded by Wellcome Leap, who are funding the In Utero programme of work.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
24/EM/0086
Date of REC Opinion
28 May 2024
REC opinion
Further Information Favourable Opinion