Parents' experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: a UK qualitative study.

Abstract

OBJECTIVE: To explore the healthcare experiences of parents whose baby died either before, during or shortly after birth between 20+0 and 23+6  weeks of gestation in order to identify practical ways to improve healthcare provision. DESIGN: Qualitative interview study. SETTING: England through two parent support organisations and four NHS Trusts. SAMPLE: A purposive sample of parents. METHODS: Thematic analysis of semi-structured in-depth narrative interviews. MAIN OUTCOME MEASURES: Parents' healthcare experiences. RESULTS: The key overarching theme to emerge from interviews with 38 parents was the importance of the terminology used to refer to the death of their baby. Parents who were told they were 'losing a baby' rather than 'having a miscarriage' were more prepared for the realities of labour, the birth experience and for making decisions around seeing and holding their baby. Appropriate terminology validated their loss, and impacted on parents' health and wellbeing immediately following bereavement and in the longer term. CONCLUSION: For parents experiencing the death of their baby at the margins between miscarriage, stillbirth and neonatal death, ensuring the use of appropriate terminology that reflects parents' preferences is vital. This helps to validate their loss and prepare them for the experiences of labour and birth. Reflecting parents' language preferences combined with compassionate bereavement care is likely to have a positive impact on parents' experiences and improve longer-term outcomes. TWEETABLE ABSTRACT: Describing baby loss shortly before 24 weeks of gestation as a 'miscarriage' does not prepare parents for labour and birth, seeing their baby and making memories.LKS is funded by a National Institute for Health Research Career Development Fellowship. This article presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. LH is supported by the National Institute for Health Research Biomedical Research Centre, Oxford; grant BRC‐1215‐20008 to the Oxford University Hospitals NHS Foundation Trust and the University of Oxford