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.