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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
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  • Danya Bakhbakhi,
  • Christy Burden,
  • Anna Davies,
  • Abigail Fraser,
  • Dimitrios Siassakos,
  • Mary Lynch,
  • Laura Timlin,
  • James Duffy,
  • Maggie Redshaw,
  • Heatherjane Dangerfield,
  • Alexander Heazell,
  • iCHOOSE Parent Involvement Group,
  • Lisa Hinton
Danya Bakhbakhi
University of Bristol Translational Health Sciences

Corresponding Author:danya.bakhbakhi@bristol.ac.uk

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Christy Burden
University of Bristol Translational Health Sciences
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Anna Davies
University of Bristol Translational Health Sciences
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Abigail Fraser
University of Bristol Population Health Sciences
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Dimitrios Siassakos
University College London Elizabeth Garrett Anderson Institute for Women's Health
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Mary Lynch
University of Bristol Medical School
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Laura Timlin
North Bristol NHS Trust Learning and Resource Centre
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James Duffy
King's College London School of Life Course & Population Sciences
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Maggie Redshaw
Brazelton Centre
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Heatherjane Dangerfield
Stillbirth and Neonatal Death Charity
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Alexander Heazell
The University of Manchester Faculty of Biology Medicine and Health
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iCHOOSE Parent Involvement Group
University of Bristol Translational Health Sciences
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Lisa Hinton
University of Oxford Nuffield Department of Primary Care Health Sciences
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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.