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January 2021 Update

Engaging parents in the review of their baby’s death

Charlotte Bevan, Senior Research and Prevention Advisor Sands

The Perinatal Mortality Review Tool should be in use after all stillbirths, neonatal losses and later miscarriages over 22 weeks in Scotland. The NBCP Scotland Bereavement Care Pathway sets out the expectations for involving families in reviews. Staff need to

  • find out if, when and how the family want to contribute
  • prompt them to think about their questions and comments beforehand
  • ensure the review looks at clinical and emotional care throughout the whole pathway of care. 

National reports show that local hospital mortality reviews are historically poor in the UK and even when they do happen, parents are rarely given the opportunity to be involved in the process. Parents’ views are important: not only because addressing their specific questions will help them understand why their baby died, but their views may also shed light on aspects of clinical and emotional care not recorded in the mother’s medical notes. Hearing parents’ experiences is also an important aspect of bereavement care for every individual parent.

The Perinatal Mortality Review Tool supports professionals to review every baby death and engage parents fully in the process.

The parent engagement approach was developed using the Being Open pilot in NHS Lothian and the PARENTS study in Bristol as best practice benchmarks. It includes not just a week by week flow chart of when and how to approach parents about the review, but materials to support this process

  • information leaflets
  • letter templates
  • guidance on using plain and sensitive language when summarising the findings of review for parents.

Making parent engagement happen in a meaningful way requires careful listening to bereaved parents’ experiences as set out in the National Bereavement Care Standards. Sharing parents' accounts of their care with staff is a really valuable way for them to understand the difference made by good bereavement care.

You can find the flowchart and materials for the PMRT Parent Engagement Pathway on the NPEU website.

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