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.

Find out what the researchers will do below

What will the researchers do?

There are 5 parts to this study:

  1. Identify outcomes from reviews of published research and interview bereaved parents
  2. Create a long list of outcomes and test out a survey
  3. Choose the most important outcomes from two rounds of surveys
  4. Hold a meeting with parents, health professionals and researchers to agree the final ‘core outcome set’ – this will be a list of ‘outcomes’.
  5. Share findings and use them to improve care

 

What did the study find far?

The study is currently at stage 3: the first round of the survey has been completed.

During interviews with bereaved parents in stage 1, parents shared outcomes that were important to them but hadn’t been measured by researchers in the past. These extra outcomes were included in the survey to find out how important they are to other parents and professionals.

 

What do the findings mean for babies and families?

The core outcome set will be used to help improve bereavement care in hospital following stillbirth, to help parents get the information and support they need and to help them make choices and get the care and support they need in pregnancy following the death of a baby.

 

What’s Sands’ involvement?

Sands has been working with the study team to develop this work and to support the inclusion of bereaved parents’ voices from the beginning. We will continue to support parents to get involved in this research and share findings with people who can make a difference.

 

You can find out more about the study here

 

Lead researcher: Dr Danya Bakhbakhi

Institution: University of Bristol

Funder: NIHR Doctoral fellowship award

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