Parents’ Voices at review: developing resources to support health professionals in engaging parents in the hospital review of their baby’s death
Bevan, Charlotte (1), Bakhbakhi, Danya (2), Burden, Christy (3), Dickens, Jo (4), Kenyon, Sara (5), Murdoch, Edile (6), Siassakos, Dimitrios (7), Storey, Claire (8)
(1) Senior Research and Prevention Advisor, Sands, (2) NIHR Doctoral Research Fellow, University of Bristol, (3) Consultant Senior Lecturer Obstetrics and Gynaecology, University of Bristol, (4) PhD student, University of Leicester (5) Professor of Evidence-based Midwifery, University of Birmingham, (6)Consultant Neonatologist, NHS Lothian, (7) Associate Professor, University College London, (8) Vice-chair International Stillbirth Alliance
There are around 5,470 perinatal deaths in the UK annually. The unexpected death of a baby around the time of birth is devastating for parents, their most pressing question being why their baby died.
Local hospital perinatal mortality review forms part of standard National Health Service (NHS) care. It should provide families with as much information as possible about why their baby died. Hospital review is also a means to learn lessons, improve care and potentially prevent future deaths.
Recent national reports have highlighted the paucity of perinatal mortality reviews in the UK, including the failure to engage parents in the hospital review process. This both impacts parents’ experience of care and presents a missed opportunity to learn lessons. The new national Perinatal Mortality Review Tool (PMRT) is designed to ensure robust and standardised review. A multi-disciplinary sub-group of the MBRRACE-UK/PMRT collaboration was formed in November 2018 to develop a pathway and resources to support parent engagement in the PMRT.
The PMRT parent engagement subgroup benchmarked a pathway and resources against the Bristol PARENTS2 study and Health Quality Improvement Scotland’s ‘Being Open’ pilot.
Several resources were developed, for national roll-out:
• A flow-chart for engaging parents
• Sensitively worded letters for parents
• Feedback forms for parents to comment on any aspect of their care
• Guidance on writing a plain English summary of the review findings, free from jargon and insensitive language.
These templates are available via the PMRT website: www.npeu.ox.ac.uk/pmrt .
Parents have the greatest stake in understanding why their baby died. In lieu of clear explanations, many parents will blame themselves. There are clinical benefits from engaging them: their input improves the quality of reviews by giving further focus and information to the process. It may indeed save future lives.
The PMRT is commissioned by the Healthcare Quality Improvement Partnership on behalf of the Department of Health (England), NHS Wales and the Health and Social Care Division of the Scottish Government. It does not require ethics committee approval as this is not a research activity. Personal identifiable data are collected without parental consent with approval under s251 of the NHS Health Act 206 in England and Wales (17/CAG/01) and with approval from the PBPP panel in Scotland (1718-0249/Kurinczuk).