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

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

Journal article

Open access

Peer reviewed

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 and Christine Andrews

Women and birth : journal of the Australian College of Midwives, Vol.38(1), 101838

2025

DOI: https://doi.org/10.1016/j.wombi.2024.101838

PMID: 39752766

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Abstract

Bereaved parents

Co-design

Consumer engagement

Patient and public involvement

Perinatal loss

Stillbirth research

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.

Details

Title: Bereaved parent involvement in co-designed stillbirth research: Experiences of Project Engage
Authors/Creators: Kirstin Tindal - Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia
Danielle Pollock - The University of Adelaide
Brad Farrant - Telethon Kids Institute, The University of Western Australia, Nedlands, Australia
Nicky Robinson - The Phoebe Joan Foundation Australia, Stanthorpe, Australia
Yumi Oba - Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia
Ashley Pade - Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia
Jassy Moore - Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia
Siobhan Loughnan - Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia
Vicky Flenady - Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia
Christine Andrews - Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia
Publication Details: Women and birth : journal of the Australian College of Midwives, Vol.38(1), 101838
Publisher: Elsevier Ltd on behalf of Australian College of Midwives.
Identifiers: 991005870931507891
Murdoch Affiliation: Ngangk Yira Institute for Change
Language: English
Resource Type: Journal article

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Collaboration types: Domestic collaboration
Citation topics: 6 Social Sciences; 6.238 Bibliometrics, Scientometrics & Research Integrity; 6.238.166 Bibliometrics
Web Of Science research areas: Nursing; Obstetrics & Gynecology
ESI research areas: Clinical Medicine