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

Area of Science:

• Perinatal mortality review
• Parental engagement
• Stillbirth and neonatal death

Background:

• Previous research (PARENTS 1 study) indicated parents desire involvement in perinatal mortality reviews (PNMR).
• Healthcare professionals acknowledged the value of parental engagement but foresaw potential challenges.
• A need existed to define principles for effective parental input in PNMR.

Purpose of the Study:

• To develop core principles and recommendations for parental engagement in the UK's PNMR process.
• To establish a framework for meaningful and robust parental involvement in stillbirth and neonatal death reviews.

Main Methods:

• A two-round Delphi technique involving a national consensus workshop and an online questionnaire.
• Stakeholder participation included clinical experts, parent advocates, and managers.
• Consensus on principles was achieved using a 9-point Likert scale, with specific criteria for agreement (over 70% 'critical', <15% 'not important').

Main Results:

• Consensus was reached on 12 core principles for parental engagement in PNMR.
• Key agreements included face-to-face explanations (96%), parental advocates (72%), documented feedback responses (92%), and plain-English summaries (100%).
• High agreement was also observed for translating action plans into lessons learned and monitoring this process (96%).

Conclusions:

• National stakeholders strongly supported parental engagement in PNMR, agreeing on principles for feasibility and robustness.
• The developed principles informed a pilot study (PARENTS 2) and will contribute to a national standardized PNMR tool.
• This work facilitates a more meaningful review process for bereaved parents.