The researchers are currently recruiting parents from across Northern Ireland who have experienced the death of a baby during or shortly after pregnancy where a fetal anomaly diagnosis was involved, as well as healthcare providers who care for parents who experience this type of loss.

Working with these groups, the Queen’s team will explore opinions and attitudes on cognitive-behavioural, self-compassion and trauma-focused interventions such as structured writing exercises with aspects of cognitive behavioural therapy (CBT), body-focused practices and self-compassion techniques, which will help develop detailed plans for use in Northern Ireland to provide better help and support.

It is estimated that in the UK, 1 in 5 pregnancies end with the fetus dying before 24 weeks (miscarriage), 1 in 250 pregnancies end with fetal death after 24 weeks (stillbirth), and the UK perinatal death rate (death within 28 days of birth) is 3.37 in 1,000 live births. Congenital anomalies contribute to these figures.

Often diagnosed during pregnancy, these anomalies include a wide range of conditions, from treatable conditions such as oro-facial clefts and congenital heart conditions, to non-fatal chromosomal conditions such as Down’s Syndrome, to a smaller number of conditions which are often life-threatening and/or untreatable.

In the past several decades, the medical and mental health communities have acknowledged the impact that pregnancy or perinatal loss due to a fetal anomaly can have on parents, and the need to support these parents is crucial for their emotional health and well-being.

Dr Áine Aventin, Principal Investigator of the study and Lecturer from the School of Nursing and Midwifery at Queen’s University Belfast, explains: “Pregnancy loss is a complex and emotional experience. Feelings of grief, loss, trauma, and distress can be common, and many parents report it as a life-altering event with long-term implications for their health and well-being. Parents in this situation need compassionate, experienced and confident healthcare staff, as well as a thoughtful, efficient and personalised service.

“At Queen’s we are committed to promoting positive change and impact in relation to pregnancy loss research and practice. This project will work with parents and key stakeholders involved in pregnancy loss in Northern Ireland, and beyond, to develop partnerships and create research evidence, which is relevant, appropriate and guided by those affected, as well as those involved in providing healthcare to ensure proper support for parents during such a vulnerable time.”

Dr Eric Spikol, Lead Researcher of the project and from the School of Nursing and Midwifery at Queen’s University Belfast, said: “Pregnancy loss is more common than many people believe but there is still a great deal of stigma around it in Northern Ireland today. We hope that this research can contribute to better awareness of pregnancy loss, increased support for parents who have experienced it, and overcoming the attitudes which feed into stigma.”

The research is funded by a Vice-Chancellor’s Fellowship Award from Queen’s University Belfast.

For more information on the project or to get involved please visit this website.

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