The PARENTS Studies - Parents’ Active Role and Engagement in Their Stillbirth/perinatal death review
Sands funded focus groups as part of the PARENTS 1 study to gather bereaved parents’ views on being involved in the local hospital review to understand what happened and what improvements in care are needed, following the death of their baby.
Parents have the greatest stake in understanding why their baby died and yet a 2015 confidential enquiry found that only 1 in 20 hospital reviews that took place following the death of a baby included an invitation to parents to give their views or concerns about all aspects of their care. A confidential enquiry involves a group of clinical experts looking at medical case notes to see if there were any problems with the care the mother or baby/babies received to ensure their care followed national and local guidelines. Confidential enquiries are run by MBRRACE-UK, a collaboration of organisations (including Sands) that is responsible for the national audit programme that collects information about all late fetal losses, stillbirths, neonatal deaths and maternal deaths across the UK.
This research sought to gather bereaved parents’ views on being involved in the review process, following the death of their baby, and how to best ensure that parents were invited to give their views in these difficult situations. Focus groups were carried out with 11 bereaved parents and common themes were drawn from these during the analysis.
The study found that most parents did not know that a review of a baby’s death took place in hospital and they would have wanted to be involved. They recommended that the process for parents being invited to share their views be flexible and that emotional aspects of care should be included alongside clinical ones in the experiences collected. These findings were key in informing the development of the Perinatal Mortality Review Tool (PMRT) which rolled out nationally in 2018, ensuring that any review following the death of a baby undertaken since then should offer parents the opportunity to give their own perspective of their care, ask questions that should be addressed by the review and share their own narrative of events.
A follow-on study called PARENTS 2 extended the PARENTS study to consider how families engaged with the review process as a whole to work out how they can best be involved so that lessons are consistently learned from such reviews. PARENTS 2 found that there was broad support amongst professionals and parents to adapting existing review processes to better engage parents.
More Information
Why was this research needed?
Following the death of a baby, a local hospital review of the care mother and baby received should take place to ensure that lessons are learned and improvements are made to prevent future deaths. It is vital bereaved parents should be offered the opportunity to share their views on the care they have received and integrate this feedback into the review process. However, the 2015 MBRRACE-UK Perinatal Confidential Enquiry found that in only 1 in 20 cases were parental concerns included in the review. Although guidance suggests that the views of bereaved parents should be sought, little evidence exists on how this should happen or how such experiences can be incorporated into the review process.
What were the aims of this study?
Building on the Sands-funded Insight study, which examined all aspects of bereavement care from parents’ perspectives, the purpose of the PARENTS 1 study was to explore bereaved parents’ views on how and when they could best be involved in the review process following the death of their baby.
What did the researchers do?
The researchers carried out focus groups with 11 bereaved parents in South West England. The data from the focus groups was analysed to pull out common themes around parental perceptions and expectations of the review process following the death of a baby.
What did the study find?
Four over-arching themes emerged from the analysis: transparency; flexibility combined with specificity; inclusivity; and a positive approach. Along with this, all of the parents were unaware that a review of their care and their baby’s death took place in the hospital. It was evident that the majority of parents were supportive of their involvement in the review process and they wanted to know the outcome of the review meeting. Parents recommended that an individualised approach should be taken to allow flexibility on when and how they could contribute to the process. The emotional aspects of care should be considered as well as the clinical care. Parents identified that the whole care pathway should be examined during the review including antenatal, postnatal, neonatal and community-based care. They agreed that there should be an opportunity for parents to share their experiences around both good and poor aspects of their care.
What impact did the study have?
The study highlighted the fact that parental involvement in the review process following the death of a baby could promote an open culture in the healthcare system and improve learning from adverse events including deaths. The research has already improved patient experience and driven improvements in hospital processes and patient safety. The results have informed, and will continue to inform, a national care pathway and a standardized tool (Perinatal Mortality Review Tool – PMRT), that was rolled out across the UK in 2018 to standardise and improve bereavement care nationally. This new system ensures that bereaved parents are asked whether they would like to contribute their views and experiences every time a review takes place.
Building on this research, the Royal College of Obstetricians and Gynaecologists (RCOG) commissioned a literature review to pull together all research done into parents’ involvement in reviews of incidents that took place during perinatal care. This concluded that more needed to be done to involve parents in reviews and that there was very little existing research in this area.
The findings of the research have also helped Sands to develop training for healthcare professionals around involving parents in review processes, along with resources for bereaved parents explaining the review process and how they can get involved. It has informed our working relationships with other national groups looking to support better review processes which include parents at their heart, such as the National Hub in Scotland, the National Child Mortality Database in England and our own work capturing parents’ experiences such as the ‘In their Own Words Report’ which explores parents’ experiences further.
A follow-on study called PARENTS 2 extended the PARENTS study to consider how families engaged with the review process as a whole to work out how they can best be involved so that lessons are consistently learned from such reviews. PARENTS 2 found that there was broad support amongst professionals and parents to adapting existing review processes to better engage parents.
Additional information:
Lead researchers – Dr Danya Bakhbakhi, Dr Christy Burden & Professor Dimitrios Siassakos
Institution – University of Bristol
Sum awarded – £876
Other funding – The Health Foundation with the support of the National Institute of Health Research Clinical Research Network (NIHR CRN)
Duration – 2014 - 2018
Publications:
PARENTS 1 - Bakhbakhi, D. et al. (2017) ‘Learning from deaths: Parents’ Active Role and ENgagement in The review of their Stillbirth/perinatal death (the PARENTS 1 study)’, BMC Pregnancy and Childbirth, 17(1), p. 333. doi:10.1186/s12884-017-1509-z.
Bristol NHS Trust report – Bakhbakhi, D., Siassakos, D. and Burden, C. (2018) The Parents’ Active Role and ENgagement in Their Stillbirth/perinatal death review (PARENTS) Study. North Bristol NHS Trust. Available at: https://www.health.org.uk/sites/default/files/IfI%20R4%20Final%20Report_North%20Bristol%20%28website%29.pdf.
PolicyBristol report - Burden, Christy, Danya Bakhbakhi, Mary Lynch, Laura Timlin, Claire Storey, Alexander Heazell, and Dimitrios Siassakos. “All Parents Should Be Offered the Opportunity to Engage with the Review of Their Baby’s Death.” PolicyBristol. University of Bristol, 2018. https://www.bristol.ac.uk/media-library/sites/policybristol/PolicyBristol-report-oct18-engaging-parents-baby-loss.pdf.
PARENTS 2 - Burden, C. et al. (2021) ‘Parents’ Active Role and ENgagement in The review of their Stillbirth/perinatal death 2 (PARENTS 2) study: a mixed-methods study of implementation’, BMJ Open, 11(3), p. e044563. Available at: https://doi.org/10.1136/bmjopen-2020-044563.