Stillbirth in Australia 5: making respectful care after stillbirth a reality: the quest for parent-centred care
Abstract
Stillbirth is a tragedy that can leave parents feeling powerless and vulnerable. Respectful and supportive bereavement care is essential to reducing adverse psychosocial impact. Initiatives of the Australian Centre of Research Excellence in Stillbirth are designed to improve care after stillbirth. At their heart are the voices of perinatally bereaved parents and support organisations and shared decision making between parents and health care providers. Priorities in future perinatal bereavement care research include ensuring appropriate care for population groups who experience higher rates of stillbirth and addressing implementation challenges to best practice in respectful and supportive bereavement care within our health systems.
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Crossing the Quality Chasm: A New Health System for the 21st Century
Baker, A. (2001) · BMJ · doi:10.1136/bmj.323.7322.1192 · Cited by 10,754 · see citing works
Crossing the Quality Chasm: A New Health System for the 21st Century
Committee on Quality of Health Care in America (2002) · Journal for Healthcare Quality · doi:10.1111/j.1945-1474.2002.tb00463.x · Cited by 8,508 · see citing works
Greenhalgh, T., Hinton, L., Finlay, T., Macfarlane, A., Fahy, N., Clyde, B., & Chant, A. (2019) · Health Expectations · doi:10.1111/hex.12888 · Cited by 1,059 · 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
Stillbirths: ending preventable deaths by 2030
de Bernis, L., Kinney, M. V., Stones, W. R., ten Hoope‐Bender, P., Vivio, D., Leisher, S. H., Bhutta, Z. A., Gülmezoglu, M., Mathai, M., Belizán, J. M., et al. (2016) · The Lancet · doi:10.1016/s0140-6736(15)00954-x · Cited by 479 · see citing works
Twelve myths about shared decision making
Légaré, F., & Thompson‐Leduc, P. (2014) · Patient Education and Counseling · doi:10.1016/j.pec.2014.06.014 · Cited by 406 · 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
Kersting, A., Dölemeyer, R., Steinig, J., Walter, F., Kroker, K., Baust, K., & Wagner, B. (2013) · Psychotherapy and Psychosomatics · doi:10.1159/000348713 · Cited by 210 · see citing works
Public involvement in research: making sense of the diversity
Oliver, S. R., Liabo, K., Stewart, R. J., & Rees, R. W. (2014) · Journal of Health Services Research & Policy · doi:10.1177/1355819614551848 · Cited by 113 · see citing works
The experiences and needs of healthcare professionals facing perinatal death: A scoping review
Shorey, S., André, B., & Lopez, V. (2017) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2016.12.007 · Cited by 96 · see citing works
Clinical practice guidelines for perinatal bereavement care — an overview
Boyle, F. M., Horey, D., Middleton, P. F., & Flenady, V. (2020) · Women and Birth · doi:10.1016/j.wombi.2019.01.008 · Cited by 90 · see citing works
The psychological effects of stillbirths on women and their doctors.
Bourne, S. (1968) · PubMed · Cited by 79 · see citing works
Perinatal bereavement: a principle-based concept analysis
Fenstermacher, K., & Hupcey, J. E. (2013) · Journal of Advanced Nursing · doi:10.1111/jan.12119 · Cited by 79 · see citing works
Xafis, V., Wilkinson, D. J. C., & Sullivan, J. (2015) · BMC Palliative Care · doi:10.1186/s12904-015-0024-0 · Cited by 61 · see citing works
Gardiner, P. A., Kent, A. L., Rodriguez, V. E., Wojcieszek, A. M., Ellwood, D. A., Gordon, A., Wilson, P. A., Bond, D. M., CHARLES, A. K., Arbuckle, S. M., et al. (2016) · BMC Pregnancy and Childbirth · doi:10.1186/s12884-016-1173-8 · Cited by 51 · see citing works
Flenady, V., Middleton, P., Wallace, E. M., Morris, J. M., Gordon, A., Boyle, F. M., Homer, C., Henry, S., Brezler, L., Wojcieszek, A. M., et al. (2020) · Women and Birth · doi:10.1016/j.wombi.2020.09.005 · Cited by 38 · see citing works
Breathing life into Australian diabetes clinical guidelines
White, H., Tendal, B., Elliott, J., Turner, T., Andrikopoulos, S., & Zoungas, S. (2020) · The Medical Journal of Australia · doi:10.5694/mja2.50509 · Cited by 37 · see citing works
Heazell, A. E. P., Leisher, S. H., Cregan, M., Flenady, V., Frøen, J. F., Gravensteen, I. K., de Groot‐Noordenbos, M., de Groot, P., Hale, S., Jennings, B., et al. (2012) · Acta Obstetricia Et Gynecologica Scandinavica · doi:10.1111/aogs.12042 · Cited by 34 · see citing works
Ekberg, S., Herbert, A., Johns, K., Tarrant, G., Sansone, H., Yates, P. M., Danby, S. J., & Bradford, N. (2019) · Palliative Medicine · doi:10.1177/0269216319888988 · Cited by 31 · see citing works
A survey of the experiences of families with bereavement support services following a perinatal loss
Inati, V., Matić, M., Phillips, C. B., Maconachie, N., Vanderhook, F., & Kent, A. L. (2017) · Australian and New Zealand Journal of Obstetrics and Gynaecology · doi:10.1111/ajo.12661 · Cited by 27 · see citing works
Rumbold, A. R., Yelland, J. S., Stuart‐Butler, D., Forbes, M., Due, C., Boyle, F. M., & Middleton, P. (2020) · Women and Birth · doi:10.1016/j.wombi.2020.08.012 · Cited by 21 · see citing works
Schirmann, A., Boyle, F. M., Horey, D., Siassakos, D. M., Ellwood, D. A., Rowlands, I. J., & Flenady, V. (2018) · Birth · doi:10.1111/birt.12344 · Cited by 19 · see citing works
Bereaved parents’ experience of care and follow‐up after stillbirth in Sydney hospitals
Bond, D., Raynes‐Greenow, C., & Gordon, A. (2018) · Australian and New Zealand Journal of Obstetrics and Gynaecology · doi:10.1111/ajo.12684 · Cited by 17 · see citing works
Rice, R., Nuzum, D., O’Connell, O., & O’Donoghue, K. (2019) · Research Involvement and Engagement · doi:10.1186/s40900-018-0137-8 · Cited by 6 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
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
Rumbold, A. R., Yelland, J. S., Stuart‐Butler, D., Forbes, M., Due, C., Boyle, F. M., & Middleton, P. (2020) · Women and Birth · doi:10.1016/j.wombi.2020.08.012 · Cited by 21 · see citing works
Mapping Hospital-Based Lactation Care Provided to Bereaved Mothers: A Basis for Quality Improvement
Noble‐Carr, D., Carroll, K., & Waldby, C. (2021) · Breastfeeding Medicine · doi:10.1089/bfm.2021.0089 · Cited by 12 · see citing works
“16 By reframing hospital-based bereaved lactation care as a biopsychosocial issue, the restrictive, sequential, linear, and gate-keeping pathway we found to be representative of contemporary bereaved lactation care would be disassembled.”
Communication and shared decision-making after stillbirth: Results of the ShaDeS study
Ravaldi, C., Mercuro, C., Mosconi, L., Roper, F., Lotto, L., Vannacci, A., & Gavaruzzi, T. (2023) · Women and Birth · doi:10.1016/j.wombi.2023.04.001 · Cited by 11 · see citing works
Experiences and needs of family members of perinatal infant deaths: a meta-synthesis
Cui, N., Wu, S., Wang, X.-Y., & Sheng, L. (2025) · Frontiers in Public Health · doi:10.3389/fpubh.2025.1580039 · Cited by 6 · see citing works
Loughnan, S. A., Boyle, F. M., Ellwood, D. A., Crocker, S., Lancaster, A., Astell, C., Dean, J., Horey, D., Callander, E. J., Jackson, C. L., et al. (2022) · Trials · doi:10.1186/s13063-022-06363-0 · Cited by 8 · see citing works
“The provision of respectful and supportive perinatal bereavement care to parents and families around stillbirth and neonatal death is a major contributor to their immediate and long-term wellbeing [10].”
BackgroundRavaldi, C., Mosconi, L., Carelli, E., Frontini, A., Tagliavini, S., Cossu, E., Monari, F., Facchinetti, F., & Vannacci, A. (2022) · Clinical and Experimental Obstetrics & Gynecology · doi:10.31083/j.ceog4910226 · Cited by 6 · see citing works
“Milk inhibition or donation should therefore be a shared decision between the couple and midwives, that is the core of patient-centred care [25].”
BackgroundBowman, A., Sullivan, T., Makrides, M., Flenady, V., Shepherd, E. S., Hawke, K., Stuart‐Butler, D., Leane, C., & Middleton, P. (2024) · BMC Pregnancy and Childbirth · doi:10.1186/s12884-024-06553-5 · Cited by 5 · see citing works
“In 2020, Women and Birth published a series focused on stillbirth in Australia and identified the national action required to decrease rates [5–9].”
BackgroundDean, J., Anne, C., Ma, T., McDaid, L. M., Pollock, D., & Boyle, F. M. (2023) · Social Sciences & Humanities Open · doi:10.1016/j.ssaho.2023.100690 · Cited by 5 · see citing works
Perinatal hospice – is there a need for such units to function in the opinion of Polish society?
Sobolewska, E., Harasim-Piszczatowska, E., Kułak-Bejda, A., Bejda, G., & Krajewska-Kułak, E. (2021) · Medycyna Paliatywna · doi:10.5114/mp.2021.108692 · Cited by 5 · see citing works
Interventions to Improve Outcomes After Pregnancy Loss: A Systematic Review
MacGregor, B., Madejowski, S., Leach, H., Macdonald, C., Dale, J. R., Grove, A., Heazell, A. E. P., Parsons, J., Staniszewska, S. H., & Hillman, S. (2025) · BJOG An International Journal of Obstetrics & Gynaecology · doi:10.1111/1471-0528.70043 · Cited by 4 · see citing works
“However, the role of GPs in delivering care after pregnancy loss is largely unexplored [62].”
Support for parents and families after stillbirth and neonatal death
Loughnan, S., Bakhbakhi, D., Ellwood, D. A., Boyle, F., Middleton, P., Burden, C., Ludski, K., Saunders, R., & Flenady, V. (2024) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd015798 · Cited by 3 · see citing works
Postle, V., Adams, J., & Hor, S.-Y. (2024) · Women and Birth · doi:10.1016/j.wombi.2024.101627 · Cited by 3 · see citing works
Jenkinson, B., McKenzie, M., Limmer, A., Charlton, V., Hardiman, L., Payne, S., Ura, A. L., Bonner, C., Lawler, S., Middleton, P., et al. (2025) · Women and Birth · doi:10.1016/j.wombi.2025.101915 · Cited by 3 · see citing works
Kilcullen, M., Kandasamy, Y., Watson, D., & Cadet‐James, Y. (2025) · OMEGA - Journal of Death and Dying · doi:10.1177/00302228251344364 · Cited by 1 · see citing works
Forsythe, D., & Davis, K. (2025) · Journal of Palliative Care · doi:10.1177/08258597251392312 · Cited by 1 · see citing works
Fogarty, S., Heazell, A., Munk, N., & Hay, P. (2026) · BMC Complementary Medicine and Therapies · doi:10.1186/s12906-026-05244-2 · Cited by 2 · see citing works
“Therefore, increased collaboration between massage therapists and perinatal HCP’s is a crucial aspect of shared decision making and person-centred care in a pregnancy following a loss and “is increasingly recognised as an essential attribute of high quality health care” [68].”
Bowman, A., Sullivan, T., Makrides, M., Flenady, V., Shepherd, E. S., Hawke, K., Stuart‐Butler, D., Leane, C., & Middleton, P. (2024) · Research Square · doi:10.21203/rs.3.rs-4096693/v1
MacGregor, B., Leach, H., Court, R. A., Grove, A., Heazell, A. E. P., Hillman, S., & Staniszewska, S. H. (2025) · BMJ Open · doi:10.1136/bmjopen-2024-093581
Robinson, K., Due, C., Briley, A. L., & Loughnan, S. A. (2025) · BJOG An International Journal of Obstetrics & Gynaecology · doi:10.1111/1471-0528.70112
Bowman, A., Sullivan, T., Makrides, M., Flenady, V., Shepherd, E. S., Hawke, K., Stuart‐Butler, D., Leane, C., & Middleton, P. (2024) · Figshare · doi:10.6084/m9.figshare.25834142
Loughnan, S. A., Boyle, F. M., Ellwood, D., Crocker, S., Lancaster, A., Astell, C., Dean, J., Horey, D., Callander, E., Jackson, C. L., et al. (2022) · Figshare · doi:10.6084/m9.figshare.20012349
Loughnan, S., Wojcieszek, A., Diget, I. S., Wilson, J. L., Andrews, C., Boyle, F. M., Gordon, A., Heazell, A., Cooper, A., Postle, V., et al. (2026) · Women and Birth · doi:10.1016/j.wombi.2026.102162
Stage-based bereavement support for parents after stillbirth: an umbrella review
Chen, L.-L., Tsai, C.-H., & Yang, C. (2026) · Journal of Reproductive and Infant Psychology · doi:10.1080/02646838.2026.2675706
Jans, D., Stuart‐Butler, D., Cadet‐James, Y., Neville, J., Stewart, S., Wojcieszek, A. M., Chee, V. A., Flenady, V., Boyle, F. M., & Vlack, S. A. (2026) · Women and Birth · doi:10.1016/j.wombi.2026.102242
- Authors
- Boyle, F. M., Horey, D., Dean, J. H., Loughnan, S., Ludski, K., Mead, J., Homer, C. S., de Wilde, D., Morris, J., & Flenady, V. J.
- Affiliations
- The University of Queensland (AU)
- Burnet Institute (AU)
- The University of Sydney (AU)
- Corresponding author
- Boyle, Frances M.
- ORCID
- Venue
- Women and Birth
- Publisher
- Elsevier BV
- Published
- 2020-11
- Volume
- 33
- Issue
- 6
- Pages
- 531-536
- ISSN
- 1871-5192 (ISSN-L)
- OpenAlex
- W3092663681
- Cited by
- 25
- References
- 24
- Citations by year
- 2026: 4 · 2025: 7 · 2024: 6 · 2023: 2 · 2022: 3 · 2021: 2 · 2020: 1
- FWCI
- 0.80
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Women and Birth (publishedVersion)
- PubMed (publishedVersion)
- UTS ePRESS (University of Technology Sydney) (submittedVersion)
- The Sydney eScholarship Repository (The University of Sydney) (submittedVersion)
- Funders
- Mater Foundation
- National Health and Medical Research Council
- Topics
- Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Global Maternal and Child Health
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- stillbirth, perinatal bereavement, respectful care, bereaved parents, psychosocial impact, shared decision-making, implementation barriers, health care system
- MeSH terms
- Psychosocial Support Systems, Australia, Bereavement, Child, Female, Grief, Health Personnel, Humans, Infant, Newborn, Parents, Pregnancy, Professional-Patient Relations, Perinatal Care, Patient-Centered Care, Stillbirth
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