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

Abstract

BackgroundWorking with bereaved parents in co-designed stillbirth research, policy and practice is essential to improving care and outcomes. ProblemEffective parent engagement is often lacking. This may be due to bereaved parents not feeling adequately and appropriately supported to be involved. AimTo 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. MethodsAn online co-designed survey was disseminated via Australian parent support organisations social media in August 2022. FindingsAll 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. ConclusionThe 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.