Research grant will help provide better care for women with fear of childbirth

Ongoing research at the University of Hull to help women with an extreme fear of childbirth will receive a boost – thanks to a grant from the East Yorkshire Clinical Commissioning Group.

Tokophobia – or an extreme fear of childbirth – affects up to 14% of women and can be debilitating for those women who face it alone. Whilst it is common for women to feel anxious or afraid of giving birth, tokophobia is a rare and severe, but recognised, mental health condition. It can make women so frightened of giving birth that they don’t want to go through with the pregnancy, even though they long for a baby.

The condition appears to be more common in women who have experienced anxiety or depression in the past, had gynaecological problems, neonatal loss, experienced sexual abuse, or if they have heard worrying birth stories from people in their own family or in the media.

Dr Catriona Jones, Senior Lecturer in maternal mental health and lecturer in midwifery, said: “Our latest focus on tokophobia – and helping practitioners to recognise and treat the fear of childbirth is set to drive advances in healthcare in our region and beyond.

“This research will build on a larger programme of research, which has been operating between the University, the East Yorkshire Clinical Commissioning Group, Humber Teaching NHS Foundation Trust and Hull University Teaching Hospitals NHS Trust for more than 15 years.

“Helping women with their mental health during pregnancy or in the first year following the birth of a child – perinatal mental health – has been pioneered by researchers at the University, working in collaboration with our healthcare partners, for many years.”

Marie Girdham, Research and Development Lead Nurse Manager at NHS East Riding of Yorkshire CCG, said: "Quality healthcare is East Riding of Yorkshire CCG's guiding principle, encompassing patient safety, clinical effectiveness and patient experience.

“Severe fear of childbirth is a mental health condition and women who have it need treatment and support. This is why the CCG is delighted to support this valuable research with a £9,430 grant that will help to explore how effective treatments for the fear of childbirth can be embedded into clinical practice along with improvements to the screening process. The project will provide real benefits to local maternity services and improvements to the health of both mothers and babies.”

Claire Marshall, who is a Specialist Nurse and Clinical Lead at Humber Teaching NHS Foundation Trust* and worked with East Yorkshire CCG to secure the funding for the new research, said: "Supporting women with fear of childbirth/tokophobia is a critical part of our work in the Specialist Perinatal Mental Health Liaison Team, and we are pleased to continue working with our colleagues at the University of Hull on this project, which will improve identification and support needs for women with perinatal mental health problems."

Between 10-20% of women are affected by perinatal mental health conditions and tokophobia is just one example. Others include depression, postpartum psychosis, bipolar and anxiety disorders - which require more specific treatment than that offered by general mental health services.

Mental wellbeing for new mothers is crucial – since negative experiences can impact on their children and their children’s children.

The grant from East Yorkshire Clinical Commissioning Group will enable researchers to undertake a study of the barriers and facilitators for the use of a system (Fear of Childbirth outcome measures) to help healthcare professionals – for example, a GP or midwife – to recognise symptoms and make a treatment plan early on.

Dr Jones said: “The Fear of Childbirth measures, which have been developed during the last 10 years, are designed to help healthcare professionals but unfortunately uptake has been low. While we developed a pathway for professionals in 2019 – which incorporates these measures and is designed to improve the identification and screening of women experiencing the fear of childbirth – we need more research into how the theory can be applied at a practical level. This latest research will help us to improve this application.

“Our planned study will help us to understand the issues that practitioners have with identifying women who need support, and hopefully enable us to introduce some appropriate outcome measures that practitioners feel confident to embed into their routine care for women with fear of childbirth.”

This work will be driven by a panel of experts by experience, who will stay involved in all aspects of the project through to completion. This ensures that the research findings are more patient/women centred and that women who have experienced tokophobia are being given a voice in terms of service design and delivery.

The main aim of this body of research is the provision of consistently high quality care for all women, with collaboration from partner agencies to ensure the best outcomes for women and their families when it comes to their maternity and birth experience. It places a premium on taking into account the short and long term needs of the woman and her family throughout.

The University of Hull has an international reputation for research and strategy work in perinatal mental health supported by a strong record of publication, conference and invited papers.

Other University of Hull research in this area includes:

  • Non-attendance of patients at perinatal mental health services appointments
  • Evaluation of perinatal mental health services
  • The use of outcome measures in perinatal mental health services
  • Evaluation of fear of childbirth measurement

Read more about recent collaborative research on tokophobia.

Professor Colin Martin, who is a member of the Perinatal Mental Health team at the University, has an enduring interest in perinatal mental health and wellbeing. As part of this interest, he has developed a number of validated measures for use within perinatal research and clinical practice.

These include the Birth Satisfaction Scale-Revised (BSS-R), an outcome measure now recommended for global use by the International Consortium for Health Outcomes Measurement (ICHOM) in the Pregnancy and Childbirth Standard Set.

Claire Marshall also works closely with the University of Hull as part of the Health Education England and National Institute for Health Research Integrated Clinical Academic Programme.

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