PARENTS Study

Women & Children's health parents studyParents’ Active Role and ENgagemenT in their Stillbirth and neonatal death review

Aim of the Study

To evaluate how parental engagement in Perinatal (Stillbirth and Neonatal) death hospital reviews could work in practice and to establish a “gold-standard” for this process that could support this parental engagement across the NHS (and internationally).

Background 

In the UK, more than 5,000 babies die before or shortly after birth each year. This can result in a wide range of negative outcomes for parents, families and healthcare staff.

Parents are rarely involved in the perinatal death hospital review process that takes place after the death of a baby (the Perinatal Mortality Review or “PNMR) and many are largely unaware that it even takes place. However, engaging parents in this process can help them deal with their grief more effectively. Their unique perspective also has the potential to improve care, going forward, by highlighting good practice and areas for improvement.  

The PARENTS Study actively involved parents in the perinatal death review process at NBT’s Southmead Hospital. Involving parents in such a sensitive area is a genuinely novel, yet urgently needed and recommended approach.

The Study was led by our Consultant Senior Clinical Lecturer, Christy Burden, hosted by North Bristol NHS Trust, funded by the Health Foundation and supported by Sands Stillbirth and Neonatal death charity. For more information email PARENTS.Study@nbt.nhs.uk

Results of this research to date:

The impact on patient care was assessed using questionnaires and focus group discussions. The views and experiences of parents, staff and stakeholders was considered to enable the development of a standardised process that is sustainable, useful and has a positive impact on patient care and improve longer term outcomes following bereavement. Approaches such as ours are also helping to promote further transparency and an open culture within the NHS.

The lessons learnt allowed the team to develop a “gold-standard” for engaging bereaved parents in the PNMR following their baby’s death. This gold-standard can be followed using the resources produced as part of the Study which are under NBT copyright:

The forms to obtain parental feedback can be downloaded below.

A summary of the PARENTS Study findings and core recommendations for high quality parental engagement in the PNMR process can be found in our summary slides below.

The PARENTS Study team have also summarised their findings and the resources required for this parental engagement in a Policy Briefing document, aimed at MPs and commissioners which can also be found below.

The future

This improved and innovative review process, that now gives parents the opportunity to be engaged, has been adopted as part of the Perinatal Mortality Review Tool (PMRT), that is being implemented nationally by our collaborators at the National Perinatal Epidemiology Unit (NPEU) at the University of Oxford.

We want MPs and commissioners to invest in parental engagement.  Our vision is to have the option for parental involvement mandated in every hospital and properly resourced.

Status

This study is closed to recruitment.

Further details

All Study resources can be downloaded and used to support parental engagement in practice. However, please note that these are all under NBT Copyright and so need to be referenced as such when used. If you wish to make any amendments to any of the resources, please contact the Study Team or the Research Intellectual Property Manager at NBT, via research@nbt.nhs.uk.