Loss of a baby during pregnancy is not an uncommon occurrence. 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, they 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/perinatal loss due to a fetal anomaly can have on parents who experience it. Feelings of grief, loss, trauma, and distress can be common.
The PRESENT Study is exploring the adaptation of cognitive-behavioural, self-compassion and trauma-focused interventions for use with parents who have experienced the death of a baby during or shortly after pregnancy where a fetal anomaly diagnosis was involved. The study aims to develop detailed plans for the adaptation, implementation, and evaluation of the original interventions for use in Northern Ireland.
The PRESENT Study aims to address the gap in research on evidence-based, culturally appropriate interventions that promote positive mental health and wellbeing in parents experiencing perinatal loss following a fetal anomaly diagnosis. Working with parents who have experienced pregnancy loss and care providers who support them, we aim to co-create appropriate interventions by adapting three interventions based on cognitive-behavioural theory and self-compassion.
We recognise that there is no ‘one-size fits all’ approach, with parents having different needs and preferences. Therefore, the study will be evaluating three different interventions, addressing the individual and varied needs of parents. The long-term aim is to use findings from this research to guide the design of future research examining how effective these interventions are in promoting positive mental health and wellbeing in parents experiencing perinatal loss.
MEET THE RESEARCH TEAM
Dr. Áine Aventin
Principal Investigator
Dr Aventin is a Lecturer at the School of Nursing and Midwifery, Queen’s University Belfast. She is a social psychologist who specialises in complex behavioural intervention development and evaluation. Her research focuses on addressing global challenges in sexual and reproductive health, maternal mental health, and pregnancy loss. She is Chair of the Northern Ireland Pregnancy Loss Research and Policy Network.
Dr. Eric Spikol
Post-Doctoral Research Fellow
Dr. Spikol is a Research Fellow at the School of Nursing & Midwifery and the Stress Trauma and Related Conditions (STARC) Research Lab in the School of Psychology. His research focuses on PTSD, the relationship between emotion regulation flexibility and resilience, and the impact of trauma on mental health and wellbeing in specific populations.
The team would like to acknowledge Dr Suzanne Heaney (ARC Coordinator for Northern Ireland) who was involved in the conception and development of this study during her time as a Post-doctoral Researcher at Queen’s.
How to Get Involved in the PRESENT Study
If you’re living in Northern Ireland and have experienced pregnancy loss before or shortly after birth following a fetal anomaly diagnosis, or if you’re a care provider routinely working with those who have experienced pregnancy loss, you may be eligible to participate in the PRESENT Study.
We are also developing a multi-disciplinary network aimed at building connections and enhancing collaboration between people with personal lived experience, academics, policymakers, practitioners, community and voluntary organisations with an interest in pregnancy loss. Interested in joining? Click here for details.
