Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together

C Andrews; A Pade; V Flenady; J Moore; K Tindal; B Farrant; S Stewart; S Loughnan; N Robinson; Y Oba; D Pollock

doi:10.1016/j.wombi.2023.12.005

Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together

Women Birth. 2024 Mar;37(2):403-409. doi: 10.1016/j.wombi.2023.12.005. Epub 2023 Dec 28.

Authors

C Andrews¹, A Pade², V Flenady², J Moore², K Tindal³, B Farrant⁴, S Stewart², S Loughnan², N Robinson⁵, Y Oba², D Pollock⁶

Affiliations

¹ Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia. Electronic address: christine.andrews@mater.uq.edu.au.
² Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia.
³ Centre of Research Excellence in Stillbirth, Mater Research, University of Queensland, Brisbane, Australia; The Ritchie Centre, Hudson Institute of Medical Research, Melbourne, Australia.
⁴ Telethon Kids Institute, The University of Western Australia, Nedlands, Australia.
⁵ The Phoebe Joan Foundation Australia, Stanthorpe, Australia.
⁶ Health Evidence Synthesis, Recommendations and Impact (HESRI), School of Public Health, Faculty of Health and Medical Science, University of Adelaide, Australia.

PMID: 38155062
DOI: 10.1016/j.wombi.2023.12.005

Abstract

Background: Working with bereaved parents in co-designed stillbirth research, policy and practice is essential to improving care and outcomes.

Problem: Effective parent engagement is often lacking. This may be due to bereaved parents not feeling adequately and appropriately supported to be involved.

Aim: To consult bereaved parents with the aim to understand their experiences, attitudes, and needs around involvement in stillbirth research and gain feedback about the usefulness and appropriateness of a proposed co-designed guide to support their involvement, including content and design aspects of this resource.

Methods: An online co-designed survey was disseminated via Australian parent support organisations social media in August 2022.

Findings: All 90 respondents were bereaved parents, 94% (n = 85) were female. Two-thirds (67%, n = 60) had never participated in stillbirth research, 80% (n = 72) agreed involvement of bereaved parents in research was important or extremely important and 81% (n = 73) were interested in future research involvement. Common motivations for involvement were wanting to leave a legacy for their baby and knowing research outcomes. Common barriers included not having been asked to participate or not knowing how. Most (89%, n = 80) agreed the proposed guide would be useful. Highly valued topics were the importance of bereaved parents' voices in stillbirth research and how they can make a difference.

Conclusion: The majority of bereaved parents we surveyed want to be involved in stillbirth research and would value a resource to support this. The proposed concept and content for a co-designed guide to aid engagement was well supported.

Keywords: Bereaved parents; Co-design; Consumer involvement; Stillbirth research; Translation.

MeSH terms

Australia
Bereavement*
Female
Humans
Male
Parents
Pregnancy
Stillbirth*
Surveys and Questionnaires