INTRODUCTION

There is a need for a core outcome set (COS) in stillbirth care research to ensure consistent reporting of outcomes that reflect the needs of bereaved families. A COS is a consensus-derived minimum set of outcomes that should be measured and reported in all clinical trials of a specific disease or trial population.  

 

Current research shows significant variation in outcomes and a lack of patient involvement, limiting the ability to draw meaningful conclusions. Many important outcomes may be overlooked due to a focus on researcher priorities. 

 

The iCHOOSE Study seeks to develop a COS by incorporating the perspectives of parents, healthcare professionals, researchers, and charities. The aim of this research was to capture the lived experience of stillbirth to identify important outcomes for future studies.

 

OBJECTIVE

To explore the lived experience of stillbirth and identify outcomes that are important to families for the development of a core outcome set for stillbirth care research.   To develop a public-facing resource on parents’ experiences of stillbirth, published on the Health Experience Insights website.  

 

INTRODUCTION

There is a need for a core outcome set (COS) in stillbirth care research to ensure consistent reporting of outcomes that reflect the needs of bereaved families. A COS is a consensus-derived minimum set of outcomes that should be measured and reported in all clinical trials of a specific disease or trial population.  

 

Current research shows significant variation in outcomes and a lack of patient involvement, limiting the ability to draw meaningful conclusions. Many important outcomes may be overlooked due to a focus on researcher priorities. 

 

The iCHOOSE Study seeks to develop a COS by incorporating the perspectives of parents, healthcare professionals, researchers, and charities. The aim of this research was to capture the lived experience of stillbirth to identify important outcomes for future studies.

 

OBJECTIVE

To explore the lived experience of stillbirth and identify outcomes that are important to families for the development of a core outcome set for stillbirth care research.   To develop a public-facing resource on parents’ experiences of stillbirth, published on the Health Experience Insights website.  

 

 

RESULTS

Forty parents and family members were interviewed. Analysis identified 343 potential care outcomes, 298 (87%) of which have not been previously reported by stillbirth care studies. Outcomes were organised into four major care outcome themes: 1) Clinical 2) Mental health and wellbeing 3) Social and family 4) Future pregnancy and children. Short- and long-term outcomes related to the labour, birth, investigations to understand why a baby had died, stillbirth in a multiple pregnancy, postpartum, psychological and subsequent pregnancy care were reported. Outcomes infrequently measured in previous stillbirth care research yet discussed by most participants were social isolation, impact on occupation and need for mental health support. Parents spoke of the importance of counselling to help them understand their grief, however, the provision of this service was reported to be varied throughout the UK. Topic summaries (n=15) for the website include narratives on finding out about the stillbirth, giving birth, spending time with the baby, the funeral, coping with grief, subsequent pregnancy care and key messages to parents and healthcare professionals. 

 

CONCLUSION

A comprehensive outcome inventory was constructed, from which the final core outcome set was determined.  Future care should be developed and evaluated using outcomes that directly relate to the lived experiences of parents and families exposed to stillbirth. The Health Experience Insights web module on Stillbirth will be available to view on https://hexi.ox.ac.uk in the Autumn 2025. 

 

 

ACKNOWLEDGEMENTS & FUNDING

We thank the parents, families, and professionals who contributed to this study.
Funded by the NIHR Doctoral Fellowship (DRF-2017-10-130).
The views expressed are those of the authors and not necessarily those of the NHS, NIHR, or the Department of Health.