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Project Engage Study

Project Status In Progress
Funding Organisation Stillbirth Foundation
Organisation Lead Stillbirth CRE
Lead Investigator Christine Andrews
Program Area Implementing Prevention Strategies
Topic Co-designing Research With Bereaved Parents
Contact Christine Andrews at christine.andrews@mater.uq.edu.au

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

https://pubmed.ncbi.nlm.nih.gov/39752766

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

A parent registry was identified as the essential next step to provide a process for connecting parents with research. Phase 2 seeks to develop, refine and evaluate the “Stillbirth Research Involvement Registry” as a model for enabling and sustaining effective bereaved parent involvement. We aim to evaluate this through a co-designed sustainable framework.

Specific aims are to:

  • Consult with bereaved parents and researchers to co-design the framework (governance, processes, resources, education) supporting bereaved parent involvement and the Registry.
  • Understand barriers and enablers in relation to effective bereaved parent involvement and implementing the Registry.
  • Better understand the experiences of both bereaved parents and researchers/clinicians engaging with co-designing of stillbirth research.
  • Measure and evaluate outcomes for the impact and value of the Registry and the relative successes of different approaches to involvement.

 

Western Pacific Regional Office of the International Stillbirth Alliance
Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine

Copyright © Stillbirth CRE