iCHOOSE - care after stillbirth research
This study aims to agree what are the key aspects of parents’ experiences which should be understood and measured in all research about bereavement care after stillbirth.
Stillbirth can have a huge impact on nearly every aspects 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 care that parents receive after their baby is stillborn. 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 stillbirth of a baby.
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.
Often parents aren’t involved in deciding what are the ‘outcomes’ that are important to them and that research should measure. The iCHOOSE study will involve parents, health professionals and researchers who will agree a final list of ‘outcomes’ that will be measured in all studies of care after stillbirth as a minimum requirement for all studies. The outcomes should apply to research carried out anywhere in the world, so the iCHOOSE study will involve professionals and bereaved parents from a range of countries, including the UK.
Sands are also funding the follow-on iCHOOSE Neonatal study which is developing a core set of outcomes for research about bereavement care after neonatal death.