‘This is time we’ll never get back’: a qualitative study of mothers’ experiences of care associated with neonatal death

Abstract

Aims To explore the perceptions and experience of women whose baby died in the neonatal period about their care in the perinatal period, on delivery suite, in the neonatal unit and afterwards, expressed in their own words.Design Secondary analysis of the Listening to Parents study, using thematic analysis based on the open text responses from a postal survey of parents whose baby died in the neonatal period in England. Women were asked about care during the pregnancy, labour and birth, around the time the baby died and about neonatal care. Women whose pregnancy was terminated for fetal abnormality were excluded from this analysis.Results Completed questionnaires were received from 249 mothers of whom most (78%) responded with open text. Overarching themes identified were ‘the importance of proximity’, ‘recognition of role and identity as a parent’ and ‘the experience of care’ and subthemes included ‘hours and moments’, ‘barriers to contact’, ‘ being able to parent, even for a short time’, ‘missed opportunities’, ‘being heard’ and ‘sensitive and responsive care’.Conclusion The findings identify what is most important for mothers in experiencing the life and death of a baby as a newborn. Physical contact with the baby was paramount, as was being treated as a mother and a parent and being able to function as such. The way in which healthcare staff behaved and how their babies were cared for was critical to how mothers felt supported and enabled at this time. If all women whose babies die in the neonatal period after birth are to receive the responsive care they need, greater understanding of the primary need for closeness and proximity, for active recognition of their parental role and staff awareness of the limited time window available is essential.