‘This is time we’ll never get back’: a qualitative study of mothers’ experiences of care associated with neonatal death
Open accessAbstract
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.
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Cites
Using thematic analysis in psychology
Braun, V., & Clarke, V. (2006) · Qualitative Research in Psychology · doi:10.1191/1478088706qp063oa · Cited by 194,414 · see citing works
The English indices of deprivation 2004
Noble, M., Wright, G., Dibben, C., Smith, G., McLennan, D., Anttila, C., Barnes, H., Mokhtar, C., Noble, S., & Gardner, J. (2004) · Cited by 1,494 · see citing works
Stillbirths: economic and psychosocial consequences
Heazell, A. E. P., Siassakos, D., Blencowe, H., Burden, C., Bhutta, Z. A., Cacciatore, J., Dang, N., Das, J., Flenady, V., Gold, K. J., et al. (2016) · The Lancet · doi:10.1016/s0140-6736(15)00836-3 · Cited by 792 · see citing works
Self-citationCloseness and separation in neonatal intensive care
Flacking, R., Lehtonen, L., Thomson, G., Axelin, A., Ahlqvist‐Björkroth, S., Morán, V. H., Ewald, U., Dykes, F., & the SCENE group (2012) · Acta Paediatrica · doi:10.1111/j.1651-2227.2012.02787.x · Cited by 497 · see citing works
Burden, C., Bradley, S., Storey, C., Ellis, A., Heazell, A. E. P., Downe, S., Cacciatore, J., & Siassakos, D. (2016) · BMC Pregnancy and Childbirth · doi:10.1186/s12884-016-0800-8 · Cited by 445 · see citing works
Ellis, A., Chebsey, C., Storey, C., Bradley, S., Jackson, S., Flenady, V., Heazell, A., & Siassakos, D. (2016) · BMC Pregnancy and Childbirth · doi:10.1186/s12884-016-0806-2 · Cited by 322 · see citing works
Support for mothers, fathers and families after perinatal death
Koopmans, L., Wilson, T., Cacciatore, J., & Flenady, V. (2013) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd000452.pub3 · Cited by 216 · see citing works
Laxton-Kane, M., & Slade, P. (2002) · Journal of Reproductive and Infant Psychology · doi:10.1080/0264683021000033174 · Cited by 160 · see citing works
Henderson, J., Carson, C., & Redshaw, M. (2016) · BMJ Open · doi:10.1136/bmjopen-2016-012676 · Cited by 154 · see citing works
Self-citationDelivered With Care. A National Survey of Women's Experience of Maternity Care 2010
Redshaw, M., & Heikkilä, K. (2010) · LSHTM Research Online (London School of Hygiene and Tropical Medicine) · Cited by 149 · see citing works
Self-citationBoyle, F. M., Vance, J. C., Najman, J. M., & Thearle, M. J. (1996) · Social Science & Medicine · doi:10.1016/0277-9536(96)00039-1 · Cited by 148 · see citing works
Parents’ first moments with their very preterm babies: a qualitative study
Arnold, L., Sawyer, A., Rabe, H., Abbott, J., Gyte, G. M., Duley, L., & Ayers, S. (2013) · BMJ Open · doi:10.1136/bmjopen-2012-002487 · Cited by 146 · see citing works
Hospital Care for Parents After Perinatal Death
Gold, K. J., Dalton, V. K., & Schwenk, T. L. (2007) · Obstetrics & Gynecology · doi:10.1097/01.aog.0000259317.55726.df · Cited by 139 · see citing works
Meeting the needs of parents after a stillbirth or neonatal death
Flenady, V., Boyle, F. M., Koopmans, L., Wilson, P. A., Stones, W. R., & Cacciatore, J. (2014) · BJOG An International Journal of Obstetrics & Gynaecology · doi:10.1111/1471-0528.13009 · Cited by 136 · see citing works
The Scope and Impact of Perinatal Loss: Current Status and Future Directions.
Bennett, S. M., Litz, B. T., Lee, B. S., & Maguen, S. (2005) · Professional Psychology: Research and Practice · doi:10.1037/0735-7028.36.2.180 · Cited by 115 · see citing works
Long-term psychosocial sequelae of stillbirth: phase II of a nested case-control cohort study
Turton, P., Evans, C., & Hughes, P. (2009) · Archives of Women's Mental Health · doi:10.1007/s00737-008-0040-7 · Cited by 105 · see citing works
Ryninks, K., Roberts‐Collins, C., McKenzie‐McHarg, K., & Horsch, A. (2014) · BMC Pregnancy and Childbirth · doi:10.1186/1471-2393-14-203 · Cited by 95 · see citing works
An exploratory study of the psychological impact and clinical care of perinatal loss
Bennett, S. M., Litz, B. T., Maguen, S., & Ehrenreich, J. T. (2008) · Journal of Loss and Trauma · doi:10.1080/15325020802171268 · Cited by 91 · see citing works
Siassakos, D., Jackson, S., Gleeson, K., Chebsey, C., Ellis, A., Storey, C., & the INSIGHT Study Group (2018) · BJOG: An International Journal of Obstetrics & Gynaecology · doi:10.1111/1471-0528.14765 · Cited by 75 · see citing works
Both empowered and powerless: mothers’ experiences of professional care when their newborn dies
Lundqvist, A., Nilstun, T., & Dykes, A. (2002) · Birth · doi:10.1046/j.1523-536x.2002.00187.x · Cited by 74 · see citing works
The POPPY Study: Developing a Model of Family‐Centred Care for Neonatal Units
Staniszewska, S. H., Brett, J., Redshaw, M., Hamilton, K., Newburn, M., Jones, N., & Taylor, L. (2012) · Worldviews on Evidence-Based Nursing · doi:10.1111/j.1741-6787.2012.00253.x · Cited by 69 · see citing works
Self-citationMaternal critical care: what can we learn from patient experience? A qualitative study
Hinton, L., Locock, L., & Knight, M. (2015) · BMJ Open · doi:10.1136/bmjopen-2014-006676 · Cited by 62 · see citing works
Family centred care? Facilities, information and support for parents in UK neonatal units
Redshaw, M., & HAMILTON, K. E. S. (2010) · Archives of Disease in Childhood Fetal & Neonatal · doi:10.1136/adc.2009.163717 · Cited by 53 · see citing works
Self-citationWhen A Baby Dies: The Experience of Late Miscarriage, Stillbirth and Neonatal Death
Kohner, N., & Henley, A. (1992) · Medical Entomology and Zoology · Cited by 49 · see citing works
Support for mothers, fathers and families after perinatal death
Flenady, V., & Wilson, T. (2008) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd000452.pub2 · Cited by 47 · see citing works
Farrales, L. L., Cacciatore, J., Jonas-Simpson, C., Dharamsi, S., Ascher, J., & Klein, M. C. (2020) · BMC Psychology · doi:10.1186/s40359-020-0385-x · Cited by 39 · see citing works
Maternal perceptions of neonatal care
Redshaw, M., & HARRIS, A. M. (1995) · Acta Paediatrica · doi:10.1111/j.1651-2227.1995.tb13705.x · Cited by 33 · see citing works
Self-citationIngram, J. C., HARRIS, A. M., & Radshaw, M. E. (1996) · Medical Entomology and Zoology · Cited by 21 · see citing works
Redshaw, M., & Henderson, J. (2018) · Birth · doi:10.1111/birt.12335 · Cited by 11 · see citing works
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Research works printed but not linked: 2
- [20]Redshaw M, Rowe R, Henderson J. Listening to parents after stillbirth or the death of their baby after birth. NPEU: Oxford, 2014.
- [21]Redshaw M, Henderson J. Safely delivered: a national survey of women’s experience of maternity care in 2014. NPEU: Oxford, 2014.
Cited by
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Roberts, L. R., Nick, J. M., Sarpy, N. L., Peters, J., & Tamares, S. (2024) · JBI Evidence Synthesis · doi:10.11124/jbies-23-00149 · Cited by 27 · see citing works
- Authors
- Redshaw, M., Henderson, J., & Bevan, C.
- Affiliations
- University of Oxford (GB)
- Sands (GB)
- Corresponding author
- Redshaw, Maggie
- Venue
- BMJ Open
- Publisher
- BMJ
- Published
- 2021-09
- Volume
- 11
- Issue
- 9
- Pages
- e050832
- ISSN
- 2044-6055 (ISSN-L)
- PMC
- PMC8438878
- OpenAlex
- W3199939792
- Cited by
- 12
- References
- 29
- Citations by year
- 2026: 3 · 2025: 1 · 2024: 3 · 2023: 4 · 2022: 1
- FWCI
- 1.36
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMJ Open (publishedVersion, cc-by-nc)
- Europe PMC (PubMed Central) (publishedVersion, other-oa)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- Policy Research Programme, Department of Health and Social Care (No. 108/0001)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Infant Development and Preterm Care
- Health Sciences › Health Professions › General Health Professions › Maternal and Neonatal Healthcare
- Keywords
- neonatal death, maternal experience, perinatal care, neonatal care, responsive caregiving
- MeSH terms
- Female, Humans, Infant, Infant, Newborn, Mothers, Parents, Pregnancy, Qualitative Research, Parturition, Perinatal Death
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