Medical and sociological research into non-invasive baby post-mortem using MRI imaging has changed NHS training and post-mortem care processes, increased uptake in post-mortem consent by parents, and initiated new bereavement support groups.

Impacts

  • The research findings have been used to provide better information to parents about the post-mortem examination at Sheffield Teaching Hospitals NHS Foundation Trust, which now includes details of the personal care that hospital staff give to babies.
  • Following the research project, take-up of minimally invasive post-mortem is increasing in the Sheffield area.
  • As a result of this project, Northumbria Healthcare NHS Foundation Trust is setting up a minimally invasive service for infant post-mortem.
  • The film Matter of Fact, which follows hospital staff through the post-mortem process, is being used in NHS staff training across the UK, including Northumbria, Yorkshire & Humber and East Midlands. The film is also being used by charities as a bereavement support tool for parents.
  • The researchers collaborated with artists and graphic designers to create the 'Remembering Baby' exhibition based on the research, which was held in London, Sheffield, Gateshead and Nottingham.
  • As part of the exhibition the research team also ran creative bereavement support workshops in the different locations. The workshops are being adopted by NHS Trusts and national bereavement support charities across the UK.
  • The quilt created by parents as part of the 'Remembering Baby' exhibition is now being used as a bereavement support tool in the Sheffield Teaching Hospitals NHS Foundation Trust – a concept being adopted by other NHS trusts and charities across the UK.
  • The research team is currently creating educational toolkits around baby-loss for the College of Paramedics.
  • Building on this research project, Professor Kate Reed and colleagues have created innovative doctoral research training on sensitive and collaborative research which is being offered to new social science students.

"I feel this research project and exhibition has benefitted both bereaved parents and professionals alike. It provided a valid, safe, dignified and respectful arena to display and talk about a highly emotive subject that otherwise is very secretive." (Kerry Marston-Giroux, Bereavement Services Coordinator, Sheffield Teaching Hospitals NHS Foundation Trust)

About the research

The loss of a baby through miscarriage, stillbirth or neonatal death remains a taboo subject, although it’s something many parents experience: in 2016 over 5,500 babies in the UK were recorded as stillborn or died shortly after birth. Post-mortem examination can provide important information for bereaved parents about the cause of death, as well as crucial knowledge for medical research. However, parents’ consent rates for post-mortem remain low.

Professor Kate Reed and Dr Elspeth Whitby, University of Sheffield, and Dr Julie Ellis, University of Huddersfield, have explored the development of minimally invasive post-mortem using Magnetic Resonance Imaging (MRI). Using an innovative ethnographic approach, the team pioneered the use of 'go-along ethnography' to follow hospital staff in their day-to-day work, combined with interviews of bereaved parents and other family members.

The findings showed that hospital staff often felt inadequately trained for these situations and found it problematic to gain parents' consent for post-mortem. Parents, on their side, felt overwhelmed by information, and expressed concerns over what would happen to their baby during post-mortem – particularly about how invasive the examination would be. Through the study, most parents who participated became positive about MRI-based post-mortem becoming more widely available in the future.

As revealed by the research, 'hidden' care practices that take place in the mortuary (such as bathing, dressing and talking to babies) were a key part of parents' experience of the post-mortem process. These insights can be an important factor when bereaved parents decide whether to consent to post-mortem.