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

Area of Science:

• Perinatal Health
• Patient and Public Involvement in Research
• Qualitative Research Methods

Background:

• Stillbirth research often lacks input from bereaved parents, who face unique challenges.
• Project Engage focused on co-designing resources to facilitate bereaved parents' involvement in research.
• Existing literature lacks descriptions of bereaved parents' experiences in co-designed stillbirth research.

Purpose of the Study:

• To describe and evaluate the involvement of bereaved parents as co-investigators in stillbirth research.
• To identify barriers and enablers for co-designing stillbirth research with bereaved parents.
• To inform best practices for involving bereaved parents in future research.

Main Methods:

• Descriptive and exploratory methods were used to document the Project Engage process (2021-2023).
• Bereaved parents were involved in all aspects of the research project.
• Iterative review and reflection were employed for evaluation, examining barriers and enablers.

Main Results:

• A co-designed guide, 'Getting Involved in Stillbirth Research: A guide for bereaved parents,' was published.
• Most co-investigators (including five parents) felt valued and that outputs met expectations.
• Enablers included clear communication, shared goals, supportive teams, and lived-experience researchers; barriers included jargon, logistics, and governance.

Conclusions:

• The co-design experience was positively perceived by both bereaved parents and researchers.
• Key facilitators for successful co-design were identified.
• The outlined process and recommendations will guide future best practices for bereaved parent involvement in stillbirth research.