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

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish
Pages (from-to)403-409
Number of pages7
JournalWomen and Birth
Volume37
Issue number2
Early online date1 Mar 2024
DOIs
Publication statusPublished - Mar 2024

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