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

OBJECTIVES:Following a perinatal death, a standardised multidisciplinary review should take place. Learning from these deaths and engaging parents in this process could help prevent future perinatal deaths in line with United Kingdom (UK) national and international targets to reduce the number of such deaths by 2020. Moreover, it would support parents in understanding events around the death of their baby. An earlier study (Parents' Active Role and ENgagement in The review of their Stillbirth/perinatal death - PARENTS 1 study) found that parents would endorse the opportunity to give feedback into the perinatal mortality review process (PNMR). In subsequent focus groups, healthcare professionals were positive about parental engagement, although they considered there may be significant challenges. The objective of this study was to develop core principles and recommendations for parental engagement in PNMR in the UK.METHODS:We followed a two-round Delphi technique to reach a consensus on core principles; including a national consensus workshop and an online questionnaire. The consensus meeting was attended by a national panel of stakeholders (clinical and academic experts, parent support groups, managers and commissioners) in stillbirth, neonatal and bereavement care (n=22). To develop recommendations for parental engagement, participants discussed four key areas including: receiving feedback from parents; format of the PNMR meeting; the parental pathway; and challenging aspects of engaging with parents in reviews. Content analysis was conducted to generate recommendations from the meeting for a subsequent, anonymous web-based survey. Attendees of the consensus workshop and members of the PARENTS 2 Project Advisory Board were asked to rank recommendations using a 9-point Likert scale from 1 (not important) to 9 (critical). It had been agreed a priori, in compliance with established Grading of Recommendations Assessment, Development and Evaluation (GRADE) criteria, that 'Consensus' would be achieved if over 70% scored the principle as 'critical' (score 7 to 9) and less than 15% scored the principle as 'not important' (score 1 to 3). Principles where Consensus was achieved would be included in the core recommendations.RESULTS:Twenty-five of the 29 invited stakeholders participated in the consensus meeting and the subsequent online questionnaire in June 2017 (86.2% response rate). Consensus was agreed on 12 core principles. Ninety-six percent agreed that it was of critical importance that there should be a face-to-face explanation of the PNMR process; 72% considered parents should be offered the opportunity to nominate a suitable advocate; 92% believed responses to parents' comments should be formally documented; 96% indicated that it was vital for action plans to be translated into lessons learnt and that this process is monitored; and 100% of stakeholders voted that a plain English summary should be produced for the parents following the meeting. There was good agreement on a further seven principles.CONCLUSIONS:Key national stakeholders were unanimously supportive of parental engagement and agreed on core principles to make it feasible, meaningful and robust process. A six-month pilot of parental engagement in the perinatal mortality review process (PARENTS 2 Study) in two UK units took place after the consensus on core principles. In collaboration with the National Perinatal Epidemiology Unit, findings will inform the national standardised perinatal mortality review tool (PMRT).