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

Section 8 references

Care around loss - parent resources

  1. Helps, Ä., et al., Governance of maternity services: Effects on the management of perinatal deaths and bereavement services. Midwifery, 2021. 101 doi: 10.1016/j.midw.2021.103049.
  2. Gandino, G., et al., Healthcare professionals’ experiences of perinatal loss: A systematic review. Journal of Health Psychology, 2019. 24(1) doi: 10.1177/1359105317705981.
  3. André B, et al., Culture of silence: Midwives’, obstetricians’ and nurses’ experiences with perinatal death. Clinical Nursing Studies, 2016. 4(4)
  4. Shorey, S., B. André, and V. Lopez, The experiences and needs of healthcare professionals facing perinatal death: A scoping review. International Journal of Nursing Studies, 2017. 68: p. 25–39 doi: 10.1016/j.ijnurstu.2016.12.007.
  5. Ellis, A., et al., Systematic review to understand and improve care after stillbirth: A review of parents’ and healthcare professionals’ experiences. BMC Pregnancy and Childbirth, 2016. 16(1): p. 1–19 doi: 10.1186/s12884-016-0806-2.
  6. Lisy, K., et al., Provision of meaningful care at diagnosis, birth, and after stillbirth: A qualitative synthesis of parents’ experiences. Birth, 2016. 43(1): p. 6–19 doi: 10.1111/birt.12217.
  7. Kingdon, C., et al., The role of healthcare professionals in encouraging parents to see and hold their stillborn baby: A meta-synthesis of qualitative studies. PLoS One, 2015. 10(7): p. e0130059 doi: 10.1371/journal.pone.0130059.
  8. Flenady, V., et al., Clinical practice guideline for care around stillbirth and neonatal death. Vol. 3.4. 2020, Brisbane: NHMRC Centre of Research Excellence.
  9. Australian Commission on Safety and Quality in Health Care. Stillbirth clinical care standard. 2022; Available from: https://www.safetyandquality.gov.au/publications-and-resources/resource-library/stillbirth-clinical-care-standard-2022.
  10. Sands. Sands Australian principles of bereavement care: Miscarriage, stillbirth and newborn death. 2018; Available from: https://www.sands.org.au/bereavement-care
  11. American College of Obstetricians and Gynecologists, Management of stillbirth: Obstetric Care Consensus No 10 Obstetrics & Gynecology, 2020. 135(3): p. e110–e132
  12. Royal College of Obstetricians and Gynaecologists. Late intrauterine fetal death and stillbirth (Green-top guideline No. 55). 2010; Available from: https://www.rcog.org.uk/guidance/browse-all-guidance/green-top-guidelines/late-intrauterine-fetal-death-and-stillbirth-green-top-guideline-no-55/.
  13. Leduc, L., No. 394. Stillbirth investigation. Journal of Obstetrics and Gynaecology Canada, 2020. 42(1): p. 92–99 doi: 10.1016/j.jogc.2019.04.001.
  14. 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/
  15. 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.
  16. 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.
  17. Aggarwal, N. and Z. Moatti, “Getting it right when it goes wrong – Effective bereavement care requires training of the whole maternity team”. Best Practice and Research: Clinical Obstetrics and Gynaecology, 2022. 80: p. 92–104 doi: 10.1016/j.bpobgyn.2021.10.008.
  18. Laing, R.E., C.M. Fetherston, and P. Morrison, Responding to catastrophe: A case study of learning from perinatal death in midwifery practice. Women & Birth, 2020. 33(6) doi: 10.1016/j.wombi.2020.02.016.
  19. Due, C., et al., Australian heterosexual women’s experiences of healthcare provision following a pregnancy loss. Women and Birth, 2018. 31(4) doi: 10.1016/j.wombi.2017.11.002.
  20. Cassidy, P.R., Care quality following intrauterine death in Spanish hospitals: results from an online survey. BMC Pregnancy & Childbirth, 2018. 18 doi: 10.1186/s12884-017-1630-z.
  21. Denney-Koelsch, E.M., D. Côté-Arsenault, and W.J. Hall, Feeling cared for versus experiencing added burden: Parents’ interactions with health-care providers in pregnancy with a lethal fetal diagnosis. Illness Crisis and Loss, 2018. 26(4): p. 293-315 doi: 10.1177/1054137316665817.
  22. Catlin, A., Interdisciplinary guidelines for care of women presenting to the emergency department with pregnancy loss. MCN: The American Journal of Maternal Child Nursing, 2018. 43(1): p. 13–18 doi: 10.1097/NMC.0000000000000399.
  23. Agwu Kalu, F., B. Coughlan, and P. Larkin, A mixed methods sequential explanatory study of the psychosocial factors that impact on midwives’ confidence to provide bereavement support to parents who have experienced a perinatal loss. Midwifery, 2018. 64 doi: 10.1016/j.midw.2018.06.011.
  24. Qian, J., et al., Influencing factors of perinatal bereavement care confidence in nurses and midwives: A cross-sectional study. Nurse Education Today, 2022. 117 doi: 10.1016/j.nedt.2022.105479.
  25. Doherty, J., et al., Student midwives’ education needs and their experience of attending a bereavement education workshop. British Journal of Midwifery, 2018. 26(8) doi: 10.12968/bjom.2018.26.8.523.
  26. Fernández-Basanta, S., et al., Involuntary pregnancy loss and nursing care: A meta-ethnography. International Journal of Environmental Research and Public Health, 2020. 17(5) doi: 10.3390/ijerph17051486.
  27. Ravaldi, C., et al., Stillbirth and perinatal care: Are professionals trained to address parents’ needs? Midwifery, 2018. 64 doi: 10.1016/j.midw.2018.05.008.
  28. Spierson, H., et al., Professionals’ practices and views regarding neonatal postmortem: Can we improve consent rates by improving training? Neonatology, 2019. 115(4): p. 341–345 doi: 10.1159/000496704.
  29. Verdon, C. and F. deMontigny, Experiences of nurses who support parents during perinatal death. JOGNN: Journal of Obstetric, Gynecologic & Neonatal Nursing, 2021. 50(5) doi: 10.1016/j.jogn.2021.04.008.
  30. Aggarwal, N. and Z. Moatti, “Getting it right when it goes wrong – Effective bereavement care requires training of the whole maternity team”. Best Practice and Research: Clinical Obstetrics and Gynaecology, 2022. 80 doi: 10.1016/j.bpobgyn.2021.10.008.
  31. Kim, E. and H.W. Kim, Nurses’ attitudes and stress related to perinatal bereavement care in Korea: A cross-sectional survey. Korean Journal of Women Health Nursing, 2022. 28(2): p. 134–144 doi: 10.4069/kjwhn.2022.05.24.1.
  32. Sharma, B., et al., Bereavement care practices following stillbirths: Health-care provider’s perspective. Indian Journal of Community Medicine, 2022. 47(1) doi: 10.4103/ijcm.ijcm_676_21.
  33. Ferreira Paris, G., F. de Montigny, and S.M. Pelloso, Professional practice in caring for maternal grief in the face of stillbirth in two countries. Revista brasileira de enfermagem, 2021. 74(3) doi: 10.1590/0034-7167-2020-0253.
  34. Zwerling, B., et al., “It’s a horrible assignment”: A qualitative study of labor and delivery nurses’ experience caring for patients undergoing labor induction for fetal anomalies or fetal demise. Contraception, 2021. 104(3) doi: 10.1016/j.contraception.2021.04.014.
  35. Asim, M., et al., The unspoken grief of multiple stillbirths in rural Pakistan: an interpretative phenomenological study. BMC Women’s Health, 2022. 22(1): p. 1–11 doi: 10.1186/s12905-022-01622-3.
  36. Boyle, F.M., et al., Clinical practice guidelines for perinatal bereavement care—An overview. Women and Birth, 2020. 33(2): p. 107–110 doi: 10.1016/j.wombi.2019.01.008.
  37. Leitao, S., et al., Development and evaluation of TEARDROP—a perinatal bereavement care training programme for healthcare professionals. Midwifery, 2021. 98 doi: 10.1016/j.midw.2021.102978.
  38. 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.
  39. Evans, M.J., E.S. Draper, and L.K. Smith, Impact of sociodemographic and clinical factors on offer and parental consent to postmortem following stillbirth or neonatal death: A UK population-based cohort study. Archives of Disease in Childhood: Fetal and Neonatal Edition, 2020. 105(5): p. 532-537 doi: 10.1136/archdischild-2019-318226.
  40. Ibiebele, I., et al., Predictors of autopsy following stillbirth in Queensland, Australia: A population-based study. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2017. 57(1): p. 33-39 doi: 10.1111/ajo.12563.
  41. Lewis, C., et al., “We might get a lot more families who will agree”: Muslim and Jewish perspectives on less invasive perinatal and paediatric autopsy. PLoS One, 2018. 13(8): p. e0202023 doi: 10.1371/journal.pone.0202023.
  42. Australian Government Department of Health. National Stillbirth Action and Implementation Plan. 2020; Available from: https://www.health.gov.au/sites/default/files/documents/2021/03/national-stillbirth-action-and-implementation-plan.pdf.
  43. Boyle, F.M., et al., Stillbirth in Australia 5: Making respectful care after stillbirth a reality: The quest for parent-centred care. Women and Birth, 2020. 33(6): p. 531–536 doi: 10.1016/j.wombi.2020.08.006.
  44. Gardiner, P.A., et al., Evaluation of an international educational programme for health care professionals on best practice in the management of a perinatal death: IMproving Perinatal mortality Review and Outcomes Via Education (IMPROVE). BMC Pregnancy and Childbirth, 2016. 16(1): p. 1-11
  45. Medeiros, P.d.B., et al., Evaluation of an online education program for healthcare professionals on best practice management of perinatal deaths: IMPROVE eLearning. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2024. 64(1): p.63-71 doi: 10.1111/ajo.13743.
  46. Warland, J., et al., ‘InUTERO’: The effectiveness of an educational half day stillbirth awareness workshop for maternity care providers. Nurse Education Today, 2020. 85 doi: 10.1016/j.nedt.2019.104298.
  47. Warland, J. and P. Glover, Talking to pregnant women about stillbirth: Evaluating the effectiveness of an information workshop for midwives using pre and post intervention surveys. Nurse Education Today, 2015. 35(10): p. e21–25 doi: 10.1016/j.nedt.2015.07.031.
  48. Ravaldi, C., et al., The BLOSSoM study: Burnout after perinatal LOSS in Midwifery. Results of a nation-wide investigation in Italy. Women and Birth, 2022. 35(1) doi: 10.1016/j.wombi.2021.01.003.
  49. Grauerholz, K.R., et al., Fostering vicarious resilience for perinatal palliative care professionals. Frontiers in Pediatrics, 2020. 8: p. 572933 doi: 10.3389/fped.2020.572933.
  50. Mills, J., T. Wand, and J.A. Fraser, Exploring the meaning and practice of self-care among palliative care nurses and doctors: A qualitative study. BMC Palliative Care, 2018. 17(1): p. 63 doi: 10.1186/s12904-018-0318-0.
  51. 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.
  52. Kirabira, V.N., et al., Prospective study to explore changes in quality of care and perinatal outcomes after implementation of perinatal death audit in Uganda. BMJ Open, 2020. 10(7): p. e027504 doi: 10.1136/bmjopen-2018-027504.
  53. Australian Commission on Safety and Quality in Health Care. Australian Hospital Patient Experience Question Set. 2023; Available from: https://www.safetyandquality.gov.au/our-work/indicators-measurement-and-reporting/australian-hospital-patient-experience-question-set.
  54. Sands UK. National Bereavement Care Pathway for Pregnancy and Baby Loss. Termination of pregnancy due to fetal anomaly (TOPFA): Full guidance document 2022; Available from: https://www.nbcpathway.org.uk/pathways/termination-of-pregnancy-for-fetal-anomaly-topfa-bereavement-care-pathway/.
  55. Sands UK. National Bereavement Care Pathway for Neonatal Death: Full guidance document. 2022; Available from: https://nbcpathway.org.uk/pathways/neonatal-death-bereavement-care-pathway.

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