Partnering with Bereaved Parents in Pregnancy and Baby Loss Research

The NHMRC Centre of Research Excellence in Stillbirth (Stillbirth CRE) is committed to embedding meaningful bereaved parent partnership across pregnancy and baby loss research nationally.

Through Project Engage, we have worked alongside bereaved parents to strengthen how lived experience is included across research design, governance, delivery and translation.

As this work has evolved, it has become clear that goodwill alone is not sufficient. Ethical and effective partnership requires shared expectations, clearly defined roles, governance clarity, and appropriate resourcing to support both parents and researchers.

Partnering with Bereaved Parents in Pregnancy and Baby Loss Research sets out practical standards and processes to support ethical, respectful and sustainable collaboration. The Guide provides guidance on:

– The foundations of respectful and equitable partnership
– Role clarity, accountability and governance arrangements
– Remuneration, recognition and support
– Psychological safety and culturally safe practice
– Processes that support co‑design and shared decision‑making

The Guide draws on learning from Project Engage and reflects the direct input and experiences of bereaved parents, researchers, and collaborators across Australia.

It is intended for researchers, research institutions, governance committees and funding bodies seeking to embed lived experience partnership in a structured, accountable and sustainable way.