Learning from deaths: Parents’ Active Role and ENgagement in The review of their Stillbirth/perinatal death (the PARENTS 1 study)

Abstract

BackgroundFollowing a perinatal death, a formal standardised multi-disciplinary review should take place, to learn from the death of a baby and facilitate improvements in future care. It has been recommended that bereaved parents should be offered the opportunity to give feedback on the care they have received and integrate this feedback into the perinatal mortality review process. However, the MBRRACE-UK Perinatal Confidential Enquiry (2015) found that only one in 20 cases parental concerns were included in the review. Although guidance suggests parental opinion should be sought, little evidence exists on how this may be incorporated into the perinatal mortality review process. The purpose of the PARENTS study was to investigate bereaved parents’ views on involvement in the perinatal mortality review process.MethodsA semi-structured focus group of 11 bereaved parents was conducted in South West England. A purposive sampling technique was utilised to recruit a diverse sample of women and their partners who had experienced a perinatal death more than 6 months prior to the study. A six-stage thematic analysis was followed to explore parental perceptions and expectations of the perinatal mortality review process.ResultsFour over-arching themes emerged from the analysis: transparency; flexibility combined with specificity; inclusivity; and a positive approach. It was evident that the majority of parents were supportive of their involvement in the perinatal mortality review process and they wanted to know the outcome of the meeting. It emerged that an individualised approach should be taken to allow flexibility on when and how they could contribute to the process. The emotional aspects of care should be considered as well as the clinical care. Parents identified that the whole care pathway should be examined during the review including antenatal, postnatal, and neonatal and community based care. They agreed that there should be an opportunity for parents to give feedback on both good and poor aspects of their care.ConclusionParents were unaware that a review of their baby’s death took place in the hospital. Parental involvement in the perinatal mortality review process would promote an open culture in the healthcare system and learning from adverse events including deaths. Further research should focus on designing and evaluating a perinatal mortality review process where parental feedback will be integral.Electronic supplementary materialThe online version of this article (doi: 10.1186/s12884-017-1509-z) contains supplementary material, which is available to authorized users.

PARENTS 2 study: consensus report for parental engagement in the perinatal mortality review process

“…The involvement of multiple stakeholders, including bereaved parents and their representatives, improves the reproducibility and generalizability of the developed recommendations in the UK. Furthermore, a range of methods including evidence from parents and healthcare professional focus‐group interviews and the stakeholder consensus meeting were used to develop the recommendations in the web‐based prioritization survey. Interestingly, content analysis of the stakeholder consensus meeting workshops revealed broadly similar findings to those of the parent and healthcare professionals focus‐group interviews we had previously carried out.…”

“…Furthermore, a range of methods including evidence from parents and healthcare professional focus‐group interviews and the stakeholder consensus meeting were used to develop the recommendations in the web‐based prioritization survey. Interestingly, content analysis of the stakeholder consensus meeting workshops revealed broadly similar findings to those of the parent and healthcare professionals focus‐group interviews we had previously carried out. Parallel themes included: provision for an individualized flexible approach for receiving feedback from parents; the necessity for feedback to be inclusive; the opportunity for parents to give positive feedback; the importance of communicating to parents the lessons learnt from their engagement; and the need for a parental advocate.…”

“…Participants were asked to discuss a sample parental letter and feedback form that was developed as a draft by the Sands/Department of Health PNMR Task and Finish group (2012–2015), which was set up to establish what information would be required for hospital reviews. The parental letter and feedback form were subsequently revised in light of the findings of the PARENTS 1 study (Appendix S1). Thirteen (59%) of the stakeholders agreed that the language of the new form needed revision to improve its clarity.…”

“…In addition, after each workshop, anonymized voting took place. Participants and the project research team were asked to vote using electronic keypads on specific questions that had emerged previously from the focus groups with parents and healthcare professionals. Immediate results for each question were presented to the participants and were followed by additional discussion of residual issues.…”

“…This was addressed previously by the PARENTS (Parents' Active Role and ENgagement in The review of their Stillbirth/perinatal death) portfolio of studies, which investigated the best way to enable parental engagement in the PNMR process. In the PARENTS 1 study, 11 bereaved parents who experienced the death of a baby at various gestational ages were interviewed, and the majority were in favor of an opportunity to contribute to PNMRs. Subsequently, focus‐group meetings took place involving a range of maternity healthcare professionals.…”