The PARENTS Studies - Parents’ Active Role and Engagement in Their Stillbirth/perinatal death review

 

Sands funded focus groups as part of the PARENTS 1 study to gather bereaved parents’ views on being involved in the local hospital review to understand what happened and what improvements in care are needed, following the death of their baby.

Parents have the greatest stake in understanding why their baby died and yet a 2015 confidential enquiry found that only 1 in 20 hospital reviews that took place following the death of a baby included an invitation to parents to give their views or concerns about all aspects of their care. A confidential enquiry involves a group of clinical experts looking at medical case notes to see if there were any problems with the care the mother or baby/babies received to ensure their care followed national and local guidelines. Confidential enquiries are run by MBRRACE-UK, a collaboration of organisations (including Sands) that is responsible for the national audit programme that collects information about all late fetal losses, stillbirths, neonatal deaths and maternal deaths across the UK.

This research sought to gather bereaved parents’ views on being involved in the review process, following the death of their baby, and how to best ensure that parents were invited to give their views in these difficult situations. Focus groups were carried out with 11 bereaved parents and common themes were drawn from these during the analysis.

The study found that most parents did not know that a review of a baby’s death took place in hospital and they would have wanted to be involved. They recommended that the process for parents being invited to share their views be flexible and that emotional aspects of care should be included alongside clinical ones in the experiences collected. These findings were key in informing the development of the Perinatal Mortality Review Tool (PMRT) which rolled out nationally in 2018, ensuring that any review following the death of a baby undertaken since then should offer parents the opportunity to give their own perspective of their care, ask questions that should be addressed by the review and share their own narrative of events.

A follow-on study called PARENTS 2 extended the PARENTS study to consider how families engaged with the review process as a whole to work out how they can best be involved so that lessons are consistently learned from such reviews. PARENTS 2 found that there was broad support amongst professionals and parents to adapting existing review processes to better engage parents.

Find out more about what we do and our plans for the future in our research strategy.