Bereaved parent involvement in co-designed stillbirth research: Experiences of Project Engage

Kirstin Tindal; Danielle Pollock; Brad Farrant; Nicky Robinson; Yumi Oba; Ashley Pade; Jassy Moore; Siobhan Loughnan; Vicky Flenady; Christine Andrews

doi:10.1016/j.wombi.2024.101838

Bereaved parent involvement in co-designed stillbirth research: Experiences of Project Engage

Women Birth. 2025 Jan 2;38(1):101838. doi: 10.1016/j.wombi.2024.101838. Online ahead of print.

Authors

Affiliations

¹ Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia; The Ritchie Centre, Hudson Institute of Medical Research, Melbourne, Australia; Department of Obstetrics and Gynaecology, Monash University, Melbourne, Australia. Electronic address: Kirstin.tindal@mater.uq.edu.au.
² Health Evidence Synthesis, Recommendations and Impact (HESRI), School of Public Health, University of Adelaide, Australia. Electronic address: https://twitter.com/@Daniellep89.
³ Telethon Kids Institute, The University of Western Australia, Nedlands, Australia.
⁴ The Phoebe Joan Foundation Australia, Stanthorpe, Australia.
⁵ Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia.
⁶ Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia. Electronic address: https://twitter.com/@VickiFlenady.
⁷ Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia. Electronic address: https://twitter.com/@ChristineAoz.

PMID: 39752766
DOI: 10.1016/j.wombi.2024.101838

Abstract

Background: While benefits of involving consumers in research are well established, bereaved parents face unique challenges, and descriptions of their experiences with co-designed stillbirth research are lacking. The collective experience of 'Project Engage' involved co-designing resources to support bereaved parents' involvement in research.

Methods: This study aimed to describe and evaluate the involvement of bereaved parents as co-investigators of a stillbirth research project. Descriptive and exploratory methods were used to describe the process of Project Engage, between 2021 and 2023, in which bereaved parents were involved in all aspects. Evaluation was performed through iterative review and reflection to examine barriers and enablers of co-designed stillbirth research.

Findings: The project team co-designed and published 'Getting Involved in Stillbirth Research: A guide for bereaved parents'. Seven co-investigators completed the end-of-phase project evaluation, including five bereaved parents and two researchers without lived experience of stillbirth. Most co-investigators felt that their contribution was highly valued and that project outputs matched their expectations. Enablers of co-design included clear communication, having a shared goal, a supportive team, relevant outputs, and lived-experience researchers on the team. Barriers included research jargon, meeting logistics, support and maintaining engagement, role expectations, and institutional governance processes.

Conclusion: The co-design experience was perceived positively by both parents and researchers, with many key facilitators to the teams' success identified. Evaluation of the experiences of bereaved parents and researchers co-designing stillbirth research is vital. The process and recommendations outlined here will guide future best practice for bereaved parent involvement in stillbirth research.

Keywords: Bereaved parents; Co-design; Consumer engagement; Patient and public involvement; Perinatal loss; Stillbirth research.