Parents Welcome Active Involvement in Perinatal Mortality Reviews

Becky McCall

June 20, 2019

LONDON – The majority of parents of stillborn babies welcome the opportunity to engage in a case review process, and importantly highlight aspects of care often not found in the notes, shows a pilot of the Parents’ Active Role and ENgagement in The Review of their Stillbirth/perinatal death (PARENTS2) study.
Results of a pilot study of the new review process were presented here at the World Congress of the Royal College of Obstetricians & Gynaecologists (RCOG), by Dr Christy Burden, consultant senior lecturer in obstetrics at the University of Bristol and practising obstetrician at North Bristol NHS Trust. 

"We found that the majority of bereaved parents welcomed the opportunity to engage in the review process after a perinatal loss and also found that parents highlight errors or good care not available in the notes that can contribute to patient safety in the future," remarked Dr Burden. She added that, based on the encouraging study results, "a robust process should be in place to realise benefits for parents and future reduction in perinatal deaths in all hospitals.

"In fact, following this work, parental engagement is now mandatory in the PMRT [Perinatal Mortality Review Tool] programme, which is available for use by trusts and health boards across the UK," said Dr Burden.

Parent Engagement Central to the Review Process

PARENTS aimed to develop, implement and evaluate a Perinatal Mortality Review (PNMR) process with parent engagement. The study comprised focus groups of bereaved parents and healthcare professionals; and an expert consensus meeting and Delphi survey (a forecasting process framework based on the results of multiple rounds of questionnaires sent to an expert panel).  

"The key drivers for this study include the need for a robust review process as identified by the Department of Health Perinatal Mortality Task and Finish Group. There is also an ambition to reduce stillbirths by 50%, according to the Department of Health and Social Care action plan, 'Safer Maternity Care', that sets out the measures that will be used to make NHS maternity services safer. The lack of parent engagement in perinatal mortality reviews has been recognised by MBRRACE-UK [Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in the UK]and the RCOG Each Baby Counts initiative," explained Dr Burden. 

The researcher went on to explain the benefits of involving bereaved parents in the review process. "It potentially helps parents deal with their grief more effectively. There is mounting evidence showing that improvements in care at and around the time of perinatal death can positively influence outcomes for parents. In addition, families have a unique viewpoint and may be able to highlight errors that may be useful in driving improvements in patient safety to help avoid such situations in the future."

National Consensus Study

Dr Burden and her colleagues firstly undertook a focus group [PARENTS 1] of 11 bereaved parents in South West England in 2015 to ascertain their perceptions of parental engagement in the PNMR.

"Most strikingly, and in agreement with national reports, we found that parents were unanimously completely unaware that any review had taken place, and all would welcome the opportunity to be involved/engaged," Dr Burden pointed out. In terms of what parents wanted from the review, "most people, unsurprisingly, simply wanted to know what had happened and what would change in the future," she said.

At this point, it was widely agreed that parents should be involved in the review process, but nobody really knew how practically to implement this this in hospitals in the UK, and potentially further afield. 

Dr Burden undertook a national consensus study to facilitate agreement on the optimal process for parental engagement. A national panel of stakeholders (25 academics, obstetricians, neonatologists, patients, clinical directors, commissioners and patient organisations) within stillbirth, neonatal and bereavement care were recruited from across the UK, and an expert consensus workshop was held. Participants discussed four key areas including receiving feedback from parents; format of the PNMR meeting; parental pathway, and challenging aspects of involving parents in reviews. This was followed by an anonymous two-stage online questionnaire and, based on the results of the survey, a project advisory board ranked core principles for parental engagement.


A consensus was reached on 14 key principles on how the process could work. "From the consensus meeting principles we developed a pathway for parental engagement that became our intervention, and this was piloted over 6 months in Southmead Hospital in Bristol. Key steps involved face-to-face explanation; the feedback form; a home visit, which was far preferable to having parents revisit the hospital where they lost their baby; a discussion in the PMNR where parental concerns are addressed and, importantly, a plain English summary of the review findings," explained Dr Burden.

The initial findings from the pilot study in Bristol were very positive. "The pilot has shown the process to be beneficial for parents. There was a high recruitment rate because parents wanted to be involved. Overwhelmingly, parents have found that being involved was useful, and were actually surprised that this was not part of routine practice," reported Dr Burden. She added that in terms of health system benefits, "the new process had improved the review, with parents highlighting things not found from just going through the notes. This has given us better understanding of what happened in their case and driven improvements in patient safety from diagnosis of obstetric cholestasis to staffing issues on NICU [Neonatal intensive care unit]."

However, Dr Burden emphasised, the PNMR was found to be resource intensive. 

Dr Marian Knight, professor of maternal and child population health at the University of Oxford, commented on the study. "The PARENTS [2] study clearly shows us that bereaved parents can be involved in the review of their care, and most welcome this involvement. The study, along with other initiatives such as those being developed in Scotland, provides key information for hospitals about how to involve parents to ensure that their perspectives are used to improve care and prevent babies from dying in the future." 

Dr Burden and her team are currently revising the Royal College of Obstetrics and Gynaecology (RCOG) stillbirth guideline, and are working with authors of national guidelines in US and Australia to ensure parental involvement in reviews is incorporated into practice.

Presented at the RCOG World Congress 2019 on June 18, 2019.  

COI: Dr Burden has no disclosures. Professor Knight discloses that she is on the same collaboration as one of the authors) working to deliver the National Perinatal Mortality Review Tool. They are using the PARENTS study to inform our guidance. 


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