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CC BY V4.0, Open Access
Journal article
Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together
Women and birth : journal of the Australian College of Midwives, Vol.37(2), pp.403-409
2024
PMID: 38155062
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.
Details
- Title
- Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together
- Authors/Creators
- C. Andrews - Univ Queensland, Ctr Res Excellence Stillbirth, Mater Res, Brisbane, Qld, AustraliaA. Pade - Univ Queensland, Ctr Res Excellence Stillbirth, Mater Res, Brisbane, Qld, AustraliaV. Flenady - The University of QueenslandJ. Moore - Univ Queensland, Ctr Res Excellence Stillbirth, Mater Res, Brisbane, Qld, AustraliaK. Tindal - Univ Queensland, Ctr Res Excellence Stillbirth, Mater Res, Brisbane, Qld, AustraliaB. Farrant - Univ Western Australia, Telethon Kids Inst, Nedlands, WA, AustraliaS. Stewart - Univ Queensland, Ctr Res Excellence Stillbirth, Mater Res, Brisbane, Qld, AustraliaS. Loughnan - The University of QueenslandN. Robinson - Phoebe Joan Fdn Australia, Stanthorpe, Qld, AustraliaY. Oba - Univ Queensland, Ctr Res Excellence Stillbirth, Mater Res, Brisbane, Qld, AustraliaD. Pollock - The University of Adelaide
- Publication Details
- Women and birth : journal of the Australian College of Midwives, Vol.37(2), pp.403-409
- Publisher
- Elsevier Ltd on behalf of Australian College of Midwives.
- Number of pages
- 7
- Grant note
- Stillbirth Foundation Australia National Health and Medical Research Council (NHMRC); National Health & Medical Research Council (NHMRC) of Australia
- Identifiers
- 991005870543907891
- Copyright
- © 2023 The Author(s).
- Murdoch Affiliation
- Ngangk Yira Institute for Change
- Language
- English
- Resource Type
- Journal article
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Source: InCites
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InCites Highlights
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- Collaboration types
- Domestic collaboration
- Citation topics
- 1 Clinical & Life Sciences
- 1.112 Palliative Care
- 1.112.1559 Grief and Bereavement
- Web Of Science research areas
- Nursing
- Obstetrics & Gynecology
- ESI research areas
- Clinical Medicine