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

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.