Bereaved parent involvement in co-designed stillbirth research: Experiences of Project Engage

Background: While benefits of involving consumers in research are well established, bereaved parents face unique challenges, and descriptions of their experiences with co-designed stillbirth research are lacking. The collective experience of ‘Project Engage’ involved co-designing resources to support bereaved parents’ involvement in research. Methods: This study aimed to describe and evaluate the involvement of bereaved parents as co-investigators of a stillbirth research project. Descriptive and exploratory methods were used to describe the process of Project Engage, between 2021 and 2023, in which bereaved parents were involved in all aspects. Evaluation was performed through iterative review and reflection to examine barriers and enablers of co-designed stillbirth research. Findings: The project team co-designed and published ‘Getting Involved in Stillbirth Research: A guide for bereaved parents’. Seven co-investigators completed the end-of-phase project evaluation, including five bereaved parents and two researchers without lived experience of stillbirth. Most co-investigators felt that their contribution was highly valued and that project outputs matched their expectations. Enablers of co-design included clear communication, having a shared goal, a supportive team, relevant outputs, and lived-experience researchers on the team. Barriers included research jargon, meeting logistics, support and maintaining engagement, role expectations, and institutional governance processes. Conclusion: The co-design experience was perceived positively by both parents and researchers, with many key facilitators to the teams’ success identified. Evaluation of the experiences of bereaved parents and researchers co-designing stillbirth research is vital. The process and recommendations outlined here will guide future best practice for bereaved parent involvement in stillbirth research.