What outcomes are important to families with a lived experience of stillbirth? A qualitative study to inform the development of a core outcome set for stillbirth care.
Qualitative interviews with 40 parents identified 349 potential care outcomes following stillbirth, 87% of which have not been previously reported in stillbirth care studies, revealing a major gap between outcomes measured in research and those important to families.
Key Findings
Results
Interviews with 40 parents and family members identified 349 potential care outcomes related to stillbirth care.
A diverse sample of parents with a personal history of stillbirth in the United Kingdom were interviewed.
Data collection, coding, and analysis were influenced by a modified Grounded Theory approach.
The study was national in scope, conducted across the United Kingdom.
Parents' lived experiences were systematically translated into outcomes for the purpose of developing a core outcome set.
Results
303 out of 349 identified outcomes (87%) had not been previously reported in stillbirth care studies.
This indicates a substantial gap between what researchers have historically measured and what families consider important.
The 349 outcomes were derived from qualitative interviews rather than existing literature.
This finding highlights that the current evidence base for stillbirth care may not reflect family priorities.
Results
Outcomes were organised into four major care outcome themes: Clinical, Mental health and wellbeing, Social and family, and Future pregnancy and children.
Short- and long-term outcomes were reported across multiple care contexts.
Care contexts included labour, birth, investigations to understand why a baby had died, stillbirth in a multiple pregnancy, postpartum care, psychological care, and subsequent pregnancy care.
This thematic structure encompassed both immediate and longer-term consequences of stillbirth.
Results
Social isolation, impact on occupation, and need for mental health support were outcomes infrequently measured in previous stillbirth care research yet discussed by most participants.
These three outcomes were highlighted as particularly underrepresented in the existing research literature.
Despite being discussed by most participants, they have rarely been used as measured outcomes in stillbirth care studies.
This suggests that research has systematically neglected psychosocial and occupational consequences of stillbirth.
Results
Counselling to help parents understand their grief was reported as important by parents, but provision of this service was varied throughout the UK.
Parents specifically spoke of the importance of counselling as a form of mental health support.
Variability in counselling provision across the UK was identified as a concern by participants.
This finding points to inequity in access to bereavement support services following stillbirth.
Conclusions
A comprehensive outcome inventory was constructed from the identified outcomes, from which a final core outcome set for stillbirth care will be determined.
The qualitative study represents one stage in a broader core outcome set development process.
The inventory is intended to ensure that future stillbirth care research is evaluated using outcomes that directly relate to the lived experiences of parents and families.
The study used a modified Grounded Theory approach to ensure systematic derivation of outcomes from interview data.
What This Means
This research investigated what outcomes matter most to families who have experienced stillbirth, in order to help design better research standards for stillbirth care. Researchers conducted in-depth interviews with 40 parents and family members across the United Kingdom, using a structured qualitative approach to turn people's personal experiences into measurable care outcomes. They found 349 different outcomes that parents considered important — and strikingly, 87% of these had never been measured in previous stillbirth care research.
The outcomes fell into four broad areas: clinical care, mental health and wellbeing, social and family life, and future pregnancies. Many of the most commonly raised concerns — such as feeling socially isolated, difficulties at work, and needing mental health support — were rarely or never studied in prior research. Parents also stressed the importance of counselling to help process grief, but reported that access to such support varied widely across the UK, suggesting that many families are not receiving consistent bereavement care.
This research suggests that there is a large disconnect between what scientists have traditionally measured in stillbirth care studies and what actually matters to the people affected. The findings will be used to build a 'core outcome set' — a standardised list of outcomes that future stillbirth care research should measure — so that studies can better reflect the real-world needs and experiences of bereaved families. This could ultimately lead to improvements in how stillbirth care is designed, delivered, and evaluated.
Bakhbakhi D, Burden C, Davies A, Fraser A, Siassakos D, Lynch M, et al.. (2026). What outcomes are important to families with a lived experience of stillbirth? A qualitative study to inform the development of a core outcome set for stillbirth care.. PloS one. https://doi.org/10.1371/journal.pone.0347544