Project Engage Study

Project Engage connects bereaved families with the research process. Involving those who have been affected by stillbirth in the research process in a meaningful way ensures that the issues important to bereaved families are heard and prioritised. This ultimately helps the Stillbirth CRE to produce research of greater quality and relevance, to help reduce stillbirth rates, and ensure that parents and families receive the best possible care when a baby dies.

Phase 1: Co-designing a guide to support bereaved parents to become involved in stillbirth research.

The guide is now complete and covers all aspects of how to be involved in research about stillbirth and what to expect when participating in the research process. We have also included quotes from bereaved parent researchers who have shared some things they found helpful, as well as examples that could be useful.

Access and download this free resource below via our get involved page. Project Engage Summary Document

Research Team: Kirstin Tindal, Danielle Pollock, Brad Farrant, Nicky Robinson, Yumi Oba, Ashley Pade, Jassy Moore, Siobhan Loughnan, Vicky Flenady, Christine Andrews, Skye Stewart.

Publications:

Tindal K, Pollock D, Farrant B, Robinson N, Oba Y, Pade A, et al. Bereaved parent involvement in co-designed stillbirth research: Experiences of Project Engage. Women Birth. 2025;38(1):101838.

Andrews C, Pade A, Flenady V, Moore J, Tindal K, Farrant B, et al. Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together. Women Birth. 2024;37(2):403-9.

Phase 2: Co-designing with bereaved parents a sustainable framework to enhance stillbirth research quality and translation.

Involving bereaved parents as equal partners in stillbirth research is essential to ensuring that the quality and relevance of research is maximised. Many bereaved parents want to be involved in research, but this is currently not standard practice. The aim of phase 2 of the project is to identify the challenges (and solutions) and opportunities bereaved parents’ face when engaged with stillbirth research, while co-designing and evaluating a sustainable framework to support this.

This project builds upon previous work undertaken in partnership with Stillbirth Foundation Australia and the Stillbirth CRE through ‘Project Engage’. Drawing on the lived experiences of bereaved parents, as well as the knowledge and expertise of experienced researchers, Getting Involved in Stillbirth Research; A guide for bereaved parents was written with and for bereaved parents. The ‘Stillbirth Research Involvement Registry’ was also established to connect parents with research opportunities.

This registry enables bereaved parents to offer their perspectives and expertise to research in various formats. The registry has been well received, with over 100 bereaved parents already registered. This next phase of Project Engage will explore if this framework meets the needs of bereaved parents to sustain effective research involvement and will evaluate the impact and value of the registry. This project aims to ensure that the voices of bereaved parents are central in shaping the research agenda to further improve outcomes for future families.

Research Team: Christine Andrews, Danielle Pollock, Kirstin Tindal, Siobhan Loughnan, Vicki Flenady, Ann Lancaster, Yumi Oba, Emma Porter, Val Ah Chee, Sarah McIntyre, Brad Farrant, Melissa Malivoire.