Parent Engagement Materials
Parents' whose baby has died have the greatest stake in understanding what happened and why their baby died. Engaging bereaved parents in the review process and including their views and any concerns and questions they have about their care will enhance the process and ensure that from the outset the review addresses their questions. Parents, particularly mothers, are the only individuals who were present for the whole of the pregnancy and therefore have a unique perspective on everything that happened to them and their baby.
Engaging bereaved parents in the review process, does not mean having the parents present at the review, it means talking to them and asking them for their views and any questions so that these can be taken into account in the review.
Sands has produced a short podcast outlining the value of parent engagement in the perinatal review process: The Parent Voice: Sands' Charlotte Bevan on parents and the Perinatal Mortality Review Tool (PMRT)
We have developed materials to support staff in Trusts and Health Boards with engaging bereaved parents. These have been developed by a multi-disciplinary group within the MBRRACE-UK/PMRT collaboration including bereaved parents and are based on the findings from the PARENTS study and the ‘Being Open’ process in Scotland:
Flow chart for parent engagement in perinatal review including supplementary notes
Supporting flowchart notes
Template information leaflet about perinatal reviews for parents
Template letter making contact with parents after discharge
Template letter for parents when parents cannot be reached and no other communication has been possible
Template parent feedback form when a stillbirth has occurred
Template parent feedback form when a neonatal death has occurred
Template keeping in touch letter to parents
Plain English guidance for writing letters and summary reports to bereaved parent
Letters and reports written for bereaved parents need to be written using appropriate and sensitive plain English language. Examples of poorly written letters were evident in the cases reviewed in recent confidential enquiries. The PMRT will not generate a letter from the technical report suitable for parents, but we do provide guidance on writing in plain English.
We also include an example of a poor letter, written to parents after the review findings, and an example of how that letter might have been improved with clearer and more sensitively worded information. Support charities, for instance, say bereaved parents value hearing health professionals express sadness or sorrow at the death of their baby, which in UK law is not an admission of liability.
Key contact responsibilities and person specification
Both the PARENTS study findings and the ‘Being Open’ process recommend bereaved parents being allocated a key contact who can act as a link between the bereaved parents and the perinatal mortality review team. Here we provide a template for the responsibilites of the key contact and a person specification.