Co-designing a sustainable framework with bereaved parents 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 this 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.