Objective To identify outcomes that are important to families, to inform the development of a core outcome set for stillbirth care research. Design Qualitative interview study. Setting A national study in the United Kingdom. Population A diverse sample of parents with a personal history of stillbirth were interviewed. Methods Data collection, coding and analysis were influenced by a modified Grounded Theory approach. Parents’ lived experiences of stillbirth were translated into outcomes for the purpose of developing a core outcome set. 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. Conclusion A comprehensive outcome inventory has now been constructed, from which the final core outcome set will be determined. Future care should be developed and evaluated using outcomes that directly relate to the lived experiences of parents and families exposed to stillbirth.

Background A core outcome set could address inconsistent outcome reporting and improve evidence for stillbirth care research, which has been identified as an important research priority. Objectives To identify outcomes and outcome measurement instruments reported by studies evaluating interventions after the diagnosis of a stillbirth. Search strategy Amed, BNI, CINAHL, ClinicalTrials.gov, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO, and WHO ICTRP from 1998 to August 2021. Selection criteria Randomised and non-randomised comparative or non-comparative studies reporting a stillbirth care intervention. Data collection and analysis Interventions, outcomes reported, definitions and outcome measurement tools were extracted. Main results 40 randomised and 200 non-randomised studies were included. 58 different interventions were reported, labour and birth care (52 studies), hospital bereavement care (28 studies), clinical investigations (116 studies), care in a multiple pregnancy (2 studies), psychosocial support (28 studies) and care in a subsequent pregnancy (14 studies). 391 unique outcomes were reported and organised into 14 outcome domains: labour and birth; postpartum; delivery of care; investigations; multiple pregnancy; mental health; emotional functioning; grief and bereavement; social functioning; relationship; whole person; subsequent pregnancy; subsequent children and siblings and economic. 242 outcome measurement instruments were used, with 0-22 tools per outcome. Conclusions Heterogeneity in outcome reporting, outcome definition and measurement tools in care after stillbirth exists. Considerable research gaps on specific intervention types in stillbirth care were identified. A core outcome set is needed to standardise outcome collection and reporting for stillbirth care research.