iCHOOSE - care after stillbirth research
This study aimed to agree on 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 aspect of a family’s life. While good care and support can’t take the pain away it can help parents journey through grief and improve their wellbeing.
Often, when researchers try to learn about how care had affected bereaved parents, they choose a set of ‘outcomes’ to measure. One outcome might be the parents’ physical or mental health. Another outcome could be when parents go back to work after taking time off.
The problem is, different studies measure different outcomes. So it can be very difficult to combine and compare their results. Another problem is that bereaved parents and family members are often not involved in deciding which outcomes should be measured.
In this study, the researchers aimed to develop ‘core outcome measures’ that could be used in all research wanting to learn more about the quality of care after stillbirth.
The researchers heard from 542 people from across 29 countries, including parents and family members who had experienced stillbirth, care professionals, and researchers.
They agreed a set of 8 core outcome measures that can be used in future research into care after stillbirth. This will make it easier to compare and combine the results of different studies to understand the bigger picture and improve care for parents and families.
Sands supported this research by working with the study team to develop the research and making sure the voices of bereaved parents’ were included from the beginning.
Sands, along with Teddy's Wish, 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.
Publications:
More information about the research
Why was this research needed?
Bereaved parents and healthcare staff agree that high quality research into care after stillbirth is a top research priority.
The researchers involved in this work wanted to see improvements in all aspects of care after stillbirth - from the time in hospital when parents find out their baby has died, right through to support in the community and even in later life.
At the start of this project, the researchers showed that more evidence was needed to develop international guidance on what good care after stillbirth should look like.
They identified two other problems:
- Different studies looking at care after stillbirth often measure different ‘outcomes’. This makes it difficult to combine and compare their results.
- The views of bereaved parents are often not included when designing care packages and researching their effects.
In this study, the researchers aimed to develop ‘core outcome measures’ that could be used in all research looking at the quality of care after stillbirth. This would make it easier to compare and combine the results of different studies and lead to a stronger evidence base for improved care.
What did the researchers do?
The researchers used surveys and stakeholder meetings to hear from a diverse group of 542 participants from 29 countries, including:
- 381 parents or family members who have experienced stillbirth
- 192 care professionals and researchers (31 of these professionals were parents with personal experiences of stillbirth).
Based on what participants said, a set of core outcomes were agreed that could be used to design and research care following stillbirth in countries across the world.
Sands supported this research by working with the study team to develop the research and making sure the voices of bereaved parents’ were included from the beginning.
What did the research find?
Based on what they heard from participants, the researchers agreed a set of eight core outcome measures that can be used in all studies evaluating care after stillbirth:
- life-threatening complications and maternal death
- parents' experience of respectful and supportive care
- grief
- mental health and emotional wellbeing
- isolation
- stigma
- impact on work
- impact on relationship with immediate family.
They also decided on some additional outcomes that could be used to measure the effects of care in specific circumstances. For example, in research aiming to understand the cause of stillbirth, or focused on pregnancy after stillbirth
What do the findings mean for babies and families?
Having an agreed set of outcome measures will make it easier to compare and combine the results of different studies to develop a stronger evidence base. This will support evidence-based guidelines that can be used across the world to improve care for parents and families who experience stillbirth.
You can find out more about the study here.
Additional information:
Lead researcher: Dr Danya Bakhbakhi
Institution: University of Bristol
Funder: NIHR
Timescale: 2018 - 2025