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Care Around Stillbirth and Neonatal Death (CASaND) Clinical Practice Guideline

Section 7 references

Care around loss - parent resources

  1. Sexton, J.K., et al., Prospective cohort study: Causes of stillbirth in Australia 2013–2018. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2021. 61(5): p. 667-674 doi: 10.1111/ajo.13334.
  2. World Health Organization. Making every baby count: Audit and review of stillbirths and neonatal deaths. 2016; Available from: https://www.who.int/publications/i/item/9789241511223.
  3. Gondwe, M.J., et al., Approaches, enablers, barriers and outcomes of implementing facility-based stillbirth and neonatal death audit in LMICs: A systematic review. BMJ Open Quality, 2021. 10(1): p. e001266 doi: 10.1136/bmjoq-2020-001266.
  4. Gutman, A., et al., Perinatal mortality audits and reporting of perinatal deaths: Systematic review of outcomes and barriers. Journal of Perinatal Medicine, 2022. 50(6): p. 684–712 doi: 10.1515/jpm-2021-0363.
  5. Sauvegrain, P., et al., Understanding high rates of stillbirth and neonatal death in a disadvantaged, high-migrant district in France: A perinatal audit. Acta Obstetricia et Gynecologica Scandinavica, 2020. 99(9): p. 1163-1173 doi: 10.1111/aogs.13838.
  6. D’Aloja, P., et al., A nationwide surveillance system to reduce perinatal death cases in Italy: Implementing a population-based pilot project. Epidemiologia & Prevenzione, 2021. 45(5): p. 343–352 doi: 10.19191/ep21.5.A002.097.
  7. Po, G., et al., A regional audit system for stillbirth: A way to better understand the phenomenon. BMC Pregnancy & Childbirth, 2019. 19(1) doi: 10.1186/s12884-019-2432-2.
  8. Flenady, V., et al., Making every birth count: Outcomes of a perinatal mortality audit program. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2021. 61(4): p. 540–547 doi: 10.1111/ajo.13325.
  9. Helps, Ä., et al., National perinatal mortality audits and resultant initiatives in four countries. European Journal of Obstetrics & Gynecology & Reproductive Biology, 2021. 267: p. 111-119 doi: 10.1016/j.ejogrb.2021.10.012.
  10. Tomlinson, A.J., et al., Improved management of stillbirth using a care pathway. International Journal of Health Governance, 2018. 23(1): p. 18-37 doi: 10.1108/IJHG-09-2017-0045.
  11. Lehner, C., et al., The feasibility of a clinical audit tool to investigate stillbirth in Australia – a single centre experience. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2019. 59(1): p. 59-65 doi: 10.1111/ajo.12799.
  12. Vallely, L.M., et al., Perinatal death audit and classification of stillbirths in two provinces in Papua New Guinea: A retrospective analysis. International Journal of Gynecology and Obstetrics, 2021. 153(1): p. 160–168 doi: 10.1002/ijgo.13431.
  13. Vallely, L.M., et al., Early neonatal death review from two provinces in Papua New Guinea: A retrospective analysis. Journal of Paediatrics and Child Health, 2021. 57(6): p. 841–846 doi: 10.1111/jpc.15333.
  14. Perinatal and Maternal Mortality Review Committee. Fifteenth annual report of the Perinatal and Maternal Mortality review Committee. Te Pūrongo ā-Tau Tekau mā mā Rima o te Komiti Arotake Mate Pēpi, Mate Whaea Hoki: Reporting Mortality and Morbidity 2020. Te Tuku Pūrongo mō te Mate me te Whakamate 2020. 2022; Available from: https://www.hqsc.govt.nz/assets/Our-work/Mortality-review-committee/PMMRC/Publications-resources/15thPMMRC-report-final.pdf
  15. Draper ES, et al. MBRRACE-UK perinatal mortality surveillance report, UK perinatal deaths for births from January to December 2020. 2020; Available from: https://www.npeu.ox.ac.uk/assets/downloads/mbrrace-uk/reports/perinatal-surveillance-report-2020/MBRRACE-UK_Perinatal_Surveillance_Report_2020.pdf
  16. Eskes, M., et al., Term perinatal mortality audit in the Netherlands 2010–2012: A population-based cohort study. BMJ Open, 2014. 4(10): p. e005652 doi: 10.1136/bmjopen-2014-005652.
  17. San Lazaro Campillo I, et al. Perinatal mortality national clinical audit in Ireland annual report 2020. 2022; Available from: https://www.ucc.ie/en/media/research/nationalperinatalepidemiologycentre/NPECPerinatalMortalityinIrelandannualreport2020.pdf.
  18. Perinatal and Maternal Mortality Review Committee. Fourteenth annual report of the Perinatal and Maternal Mortality Review Committee. 2021; Available from: www.hqsc.govt.nz/our-programmes/mrc/pmmrc.
  19. Queensland Maternal and Perinatal Quality Council. Queensland mothers and babies 2018–2019. 2021; Available from: https://clinicalexcellence.qld.gov.au/priority-areas/safety-and-quality/queensland-maternal-and-perinatal-quality-council.
  20. Centre for Epidemiology and Evidence. New South Wales mothers and babies 2020. 2021; Available from: https://www.health.nsw.gov.au/hsnsw/Publications/mothers-and-babies-2020.pdf
  21. Consultative Council on Obstetric and Paediatric Mortality and Morbidity. Victoria’s mothers, babies and children 2020. 2022; Available from: https://www.safercare.vic.gov.au/publications/victorias-mothers-babies-and-children-2020-report-and-presentations
  22. Fathima P, et al. The 16th report of the Perinatal and Infant Mortality Committee of Western Australia, 2014–2018. 2022; Available from: https://www.health.wa.gov.au/~/media/Corp/Documents/Reports-and-publications/Perinatal-infant-and-maternal/16-Report-of-the-Perinatal-and-Infant-Mortality-Committee.pdf.
  23. Maternal and Perinatal Mortality Committee. Maternal and perinatal mortality in South Australia 2020. 2023; Available from: https://www.wellbeingsa.sa.gov.au/assets/downloads/maternal-perinatal-mortality/Maternal-and-Perinatal-Mortality-in-South-Australia-2020.pdf.
  24. Council of Obstetric and Paediatric Mortality and Morbidity. Annual report 2020. 2021; Available from: https://www.health.tas.gov.au/publications/council-obstetric-and-paediatric-mortality-and-morbidity-copmm-2020-annual-report.
  25. Li, L. and L. O’Neil. Northern Territory midwives’ collection mothers and babies 2020 2023; Available from: https://digitallibrary.health.nt.gov.au/prodjspui/bitstream/10137/12467/1/Northern%20Territory%20Midwives%20Collection%20Mothers%20and%20Babies%20Report%202020.pdf
  26. ACT Health. Perinatal mortality in the Australian Capital Territory, 2011–2015. 2017; Available from: https://www.health.act.gov.au/sites/default/files/2019-09/Number%2065%20-%20Perinatal%20Mortality%20in%20the%20ACT%202011-2015%20version%205.pdf.
  27. Australian Institute of Health and Welfare. Stillbirths and neonatal deaths in Australia 2017 and 2018. Perinatal statistics series no. 38. Cat. no. PER 115. 2021; Available from: https://www.aihw.gov.au/reports/mothers-babies/stillbirths-and-neonatal-deaths-in-australia-2017/summary.
  28. COAG Health Council Australian Government Department of Health. Woman-centred care: Strategic directions for Australian maternity services. 2019 August; Available from: https://www.health.gov.au/resources/publications/woman-centred-care-strategic-directions-for-australian-maternity-services?language=en.
  29. Sands UK. National Bereavement Care Pathway for Pregnancy and Baby Loss. Stillbirth: Full guidance document. 2022; Available from: https://www.nbcpathway.org.uk/pathways/stillbirth-bereavement-care-pathway/
  30. Smith, L.K., et al., Parents’ experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: A UK qualitative study. BJOG: An International Journal of Obstetrics and Gynaecology, 2020. 127(7): p. 868–874 doi: 10.1111/1471-0528.16113.
  31. Helps, Ä., et al., Perinatal mortality audits and reviews: Past, present and the way forward. European Journal of Obstetrics & Gynecology & Reproductive Biology, 2020. 250: p. 24–30 doi: 10.1016/j.ejogrb.2020.04.054.
  32. Bakhbakhi, D., et al., Learning from deaths: Parents’ Active Role and ENgagement in The review of their Stillbirth/perinatal death (the PARENTS 1 study). BMC Pregnancy & Childbirth, 2017. 17: p. 1-6 doi: 10.1186/s12884-017-1509-z.
  33. Bakhbakhi, D., et al., PARENTS 2 Study: A qualitative study of the views of healthcare professionals and stakeholders on parental engagement in the perinatal mortality review – From ‘bottom of the pile’ to joint learning. BMJ Open, 2018. 8(11): p. e023792 doi: 10.1136/bmjopen-2018-023792.
  34. Bakhbakhi, D., et al., PARENTS 2 study: Consensus report for parental engagement in the perinatal mortality review process. Ultrasound in Obstetrics & Gynecology, 2019. 54(2): p. 215–224 doi: 10.1002/uog.20139.
  35. Burke, B., et al., Barriers to attendance at a tertiary hospital’s perinatal mortality meeting. Irish Journal of Medical Science, 2023. 192: p. 1265–1270 doi: 10.1007/s11845-022-03137-0.
  36. Mukinda, F.K., et al., Practice of death surveillance and response for maternal, newborn and child health: A framework and application to a South African health district. BMJ Open, 2021. 11(5): p. e043783 doi: 10.1136/bmjopen-2020-043783.
  37. Knight, M., Strengths and weaknesses of national confidential case reviews of maternal and newborn morbidity and mortality. Early Human Development, 2019. 138: p. 104848 doi: 10.1016/j.earlhumdev.2019.104848.
  38. Bartlett, K., et al., Rethinking placental pathology in the PSANZ classification of unexplained stillbirth at term. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2017. 57(3): p. 248–252 doi: 10.1111/ajo.12492.
  39. Higgins, L.E., A.E.P. Heazell, and M.K. Whitworth, Persistent inaccuracies in completion of medical certificates of stillbirth: A cross-sectional study. Paediatric & Perinatal Epidemiology, 2018. 32(5): p. 474–481 doi: 10.1111/ppe.12501.
  40. Heazell, A.E.P., et al., Stillbirths: Economic and psychosocial consequences. The Lancet, 2016. 387(10018): p. 604–616 doi: 10.1016/S0140-6736(15)00836-3.
  41. Flenady, V., et al., Clinical practice guideline for care around stillbirth and neonatal death. Vol. 3.4. 2020, Brisbane: NHMRC Centre of Research Excellence.
  42. Burden, C., et al., Parents’ Active Role and ENgagement in the review of their Stillbirth/perinatal death 2 (PARENTS 2) study: A mixed-methods study of implementation. BMJ Open, 2021. 11(3): p. e044563 doi: 10.1136/bmjopen-2020-044563.
  43. Boyle, F.M., et al., Parent engagement in perinatal mortality reviews: An online survey of clinicians from six high-income countries. BJOG: An International Journal of Obstetrics and Gynaecology, 2021. 128(4): p. 696–703 doi: 10.1111/1471-0528.16529.
  44. Kurinczuk, J.J., et al. Learning from standardised reviews when babies die. National perinatal mortality review tool: Second annual report. 2020; Available from: https://www.npeu.ox.ac.uk/assets/downloads/pmrt/reports/report-2020/PMRT_Report_2020_-_Full_report__10_12_2020_V10_FINAL.pdf.
  45. Australian Commission on Safety and Quality in Health Care. Stillbirth clinical care standard. 2022 November; Available from: https://www.safetyandquality.gov.au/publications-and-resources/resource-library/stillbirth-clinical-care-standard-2022.
  46. Angell, J.N., et al., Determining the cause of stillbirth in Kumasi, Ghana. International Journal of Gynecology & Obstetrics, 2019. 147(2): p. 173–178 doi: 10.1002/ijgo.12930.
  47. Lewkowitz, A.K., et al., Association between stillbirth at 23 weeks of gestation or greater and severe maternal morbidity. Obstetrics & Gynecology, 2019. 134(5): p. 964–973 doi: 10.1097/aog.0000000000003528.
  48. Gulati, N., et al., Cause of intrauterine and neonatal death in twin pregnancies (CoDiT): Development of a novel classification system. BJOG: An International Journal of Obstetrics and Gynaecology, 2020. 127(12): p. 1507–1515 doi: 10.1111/1471-0528.16291.
  49. Aminu, M., et al., Cause of and factors associated with stillbirth: A systematic review of classification systems. Acta Obstetricia et Gynecologica Scandinavica, 2017. 96(5): p. 519–528 doi: 10.1111/aogs.13126.
  50. Fabrizio, D., et al., A comparison of three classification systems for stillbirth. Journal of Maternal-Fetal and Neonatal Medicine, 2022. 35(19): p. 3722–3728 doi: 10.1080/14767058.2020.1839749.
  51. Jayaratnam, S., et al., A prospective review of perinatal mortality at Hospital Nacional Guido Valadares (HNGV). Australian & New Zealand Journal of Obstetrics & Gynaecology, 2020. 60(1): p. 70–75 doi: 10.1111/ajo.12991.
  52. Reinebrant, H.E., et al., Making stillbirths visible: A systematic review of globally reported causes of stillbirth. BJOG: An International Journal of Obstetrics and Gynaecology, 2018. 125(2): p. 212–224 doi: 10.1111/1471-0528.14971.
  53. Auger, N., et al., Decreasing use of autopsy for stillbirths and infant deaths: Missed opportunity. Journal of Perinatology, 2018. 38(10): p. 1414–1419 doi: 10.1038/s41372-018-0191-y.
  54. Wijs, L.A., et al., Causes of stillbirth in a socioeconomically disadvantaged urban Australian population – A comprehensive analysis. Journal of Maternal-Fetal & Neonatal Medicine, 2017. 30(23): p. 2851–2857 doi: 10.1080/14767058.2016.1265933.
  55. Goldenberg, R.L., et al., Criteria for assigning cause of death for stillbirths and neonatal deaths in research studies in low-middle income countries. Journal of Maternal-Fetal & Neonatal Medicine, 2019. 32(11): p. 1915-1923 doi: 10.1080/14767058.2017.1419177.
  56. Breiman, R.F., et al., Postmortem investigations and identification of multiple causes of child deaths: An analysis of findings from the Child Health and Mortality Prevention Surveillance (CHAMPS) network. PLoS Medicine, 2021. 18(9): p. 1-19 doi: 10.1371/journal.pmed.1003814.
  57. Jones, F., et al., Practice of pathological examinations in stillbirths: A 10-year retrospective study. Journal of Gynecology Obstetrics and Human Reproduction, 2017. 46(1): p. 61–67 doi: 10.1016/j.jgyn.2016.06.004.
  58. Taweevisit, M. and P.S. Thorner, Placental findings contributing to perinatal death: A 15-year retrospective review from a teaching hospital in Thailand. Fetal and Pediatric Pathology, 2022. 41(1): p. 18-28 doi: 10.1080/15513815.2020.1747121.
  59. Page, J.M. and R.M. Silver, Stillbirth: Evaluation and follow-up. Obstetrics and Gynecology Clinics of North America, 2020. 47(3): p. 439-451 doi: 10.1016/j.ogc.2020.04.008.
  60. Man, J., et al., Stillbirth and intrauterine fetal death: Role of routine histopathological placental findings to determine cause of death. Ultrasound in Obstetrics & Gynecology, 2016. 48(5): p. 579–584 doi: 10.1002/uog.16019.
  61. Wojcik, M.H., et al., Mortality in the neonatal intensive care unit: improving the accuracy of death reporting. Journal of Perinatology, 2022. 42(5): p. 671-676 doi: 10.1038/s41372-021-01214-3.
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  63. Bezhenar, V.F., L.A. Ivanova, and D.O. Ivanov, Legal aspects of perinatal loss. Journal of Obstetrics and Women’s Diseases, 2021. 70(3): p. 143–150 doi: 10.17816/JOWD64324.
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  65. Knight, M., Strengths and weaknesses of national confidential case reviews of maternal and newborn morbidity and mortality. Early Human Development, 2019. 138 doi: 10.1016/j.earlhumdev.2019.104848.
  66. Willcox, M.L., et al., Maternal and perinatal death surveillance and response: A systematic review of qualitative studies. Bulletin of the World Health Organization, 2023. 101(1): p. 62–75G doi: 10.2471/blt.22.288703.
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  70. Leisher, S.H., et al., Classification systems for causes of stillbirth and neonatal death, 2009–2014: An assessment of alignment with characteristics for an effective global system. BMC Pregnancy and Childbirth, 2016. 16(1): p. 269 doi: 10.1186/s12884-016-1040-7.
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  80. de Graaff, E.C., et al., Ending preventable stillbirths and improving bereavement care: A scorecard for high- and upper-middle income countries. BMC Pregnancy and Childbirth, 2023. 23(1): p. 480 doi: 10.1186/s12884-023-05765-5.
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