The iCHOOSE Neonatal study
This Sands-funded study aims to agree what are the key aspects of parents’ experiences which should be understood and measured in all research about care after the death of a baby in the first month of life. It builds on the iCHOOSE study which did the same for care after stillbirth.
The death of a baby can have a huge impact on nearly every aspect of a family’s life and while good care and support can’t take the pain away it can help parents journey through grief and their wellbeing. Research is important to improve the bereavement care that parents receive after their baby dies in the first month of life. So far, research has improved care to be kinder and more sensitive, but there is much more to understand about what makes good bereavement care and follow-on support after the death of a baby in the first month of life.
Often when researchers carry out studies, they decide which results they are going to measure; these are called ‘outcomes’. One outcome might be parents’ physical or mental health, a different outcome might be parents’ going back to work having taken time off. Different projects and researchers may choose to measure different ‘outcomes’. This means that it’s difficult to combine the results of studies in similar areas because they don’t all measure the same thing.
Parents aren’t always involved in deciding what are the ‘outcomes’ that are important to them and that research should measure. The iCHOOSE Neonatal study will involve bereaved parents, health professionals and researchers who will agree a final list of ‘outcomes’ that will be measured in all studies of care after the death of a baby in the first month of life. It follows on from the iCHOOSE study which has taken the same approach for research into care after stillbirth.
More information
Why is the research important?
Improving care for parents and families after the death of a baby in the first month of life relies on research in this area being relevant and reliable. As explained above, if different outcomes are measured by different research studies it can be very difficult to compare and combine the results to get a clear picture of what works best for parents and families. Involving bereaved parents and families in specifying which outcomes should always be measured makes sure that research has the best chance of improving care for bereaved families.
What will the researchers do?
There are five parts to this study:
1. Identify outcomes from reviews of published research and interview bereaved parents
2. Choose the most important outcomes from two rounds of surveys
3. Hold a meeting with bereaved parents, health professionals and researchers to agree the final ‘core outcome set’ – this will be a list of ‘outcomes’.
4. Repeat this process to work out how the list of outcomes will be measured in studies
5. Share findings and use them to improve care
What do we expect the study to find?
The core outcome set will be used to help improve bereavement care in hospital following the death of a baby in the first month of life, helping parents to get the information and support they need and to help them make choices and get the care and support they need.
What’s Sands’ involvement?
Sands is funding the research and has been working with the study team to develop this work and to support the inclusion of bereaved parents’ voices. We supported the original iCHOOSE study, which is developing a core outcome set for care after stillbirth, and have funded this study to build on that work. We will continue to support parents to get involved in this research and share findings with people who can make a difference.
Additional information
Lead researcher - Dr Danya Bakhbakhi
Institution - University of Bristol
Funders - Sands, NIHR
Sands funding amount - £40,036.53
Study duration - 2023-2025