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 research
Abstract
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.