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

Section 3 references

Care around loss - parent resources
  1. 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.
  2. Heazell, A.E.P., et al., Stillbirths: Economic and psychosocial consequences. Lancet, 2016. 387(10018): p. 604–616 doi: 10.1016/S0140-6736(15)00836-3.
  3. Helps, Ä., et al., Impact of bereavement care and pregnancy loss services on families: Findings and recommendations from Irish inquiry reports. Midwifery, 2020. 91(2020): p.102841 doi: 10.1016/j.midw.2020.102841.
  4. Berry, S.N., T. Marko, and G. Oneal, Qualitative interpretive metasynthesis of parents’ experiences of perinatal loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 2021. 50(1): p. 20–29 doi: 10.1016/j.jogn.2020.10.004.
  5. Nuzum, D., S. Meaney, and K. O’Donoghue, The impact of stillbirth on bereaved parents: A qualitative study. PLoS One, 2018. 13(1): p. e0191635 doi: 10.1371/journal.pone.0191635.
  6. O’Connell, O., S. Meaney, and K. O’Donoghue, Anencephaly; the maternal experience of continuing with the pregnancy. Incompatible with life but not with love. Midwifery, 2019. 71: p. 12–18 doi: 10.1016/j.midw.2018.12.016.
  7. COAG Health Council Australian Government Department of Health. Woman-centred care: Strategic directions for Australian maternity services. 2019; Available from: https://www.health.gov.au/resources/publications/woman-centred-care-strategic-directions-for-australian-maternity-services?language=en.
  8. 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/
  9. 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.
  10. Lou, S., et al., Parental response to severe or lethal prenatal diagnosis: A systematic review of qualitative studies. Prenatal Diagnosis, 2017. 37(8): p. 731–743 doi: 10.1002/pd.5093.
  11. Gold, K.J., et al., Who tells a mother her baby has died? Communication and staff presence during stillbirth delivery and early infant death. Journal of Perinatology, 2017. 37(12): p. 1330-1334 doi: 10.1038/jp.2017.125.
  12. Nuzum, D., S. Meaney, and K. O’Donoghue, Communication skills in obstetrics: What can we learn from bereaved parents? Irish Medical Journal, 2017. 110(2): p. 512
  13. Bakhbakhi, D., et al., Care following stillbirth in high-resource settings: Latest evidence, guidelines, and best practice points. Seminars in Fetal & Neonatal Medicine, 2017. 22(3): p. 161–166 doi: 10.1016/j.siny.2017.02.008.
  14. Christou, A., et al., ‘I should have seen her face at least once’: Parent’s and healthcare providers’ experiences and practices of care after stillbirth in Kabul province, Afghanistan. Journal of Perinatology, 2021. 41(9): p. 2182-2195 doi: 10.1038/s41372-020-00907-5.
  15. Luz, R., et al., Breaking bad news in prenatal medicine: A literature review. Journal of Reproductive and Infant Psychology, 2017. 35(1): p. 14–31 doi: 10.1080/02646838.2016.1253052.
  16. Kratovil, A.L. and W.A. Julion, Health-care provider communication with expectant parents during a prenatal diagnosis: An integrative review. Journal of Perinatology, 2017. 37(1): p. 2-12 doi: 10.1038/jp.2016.123.
  17. Dubenetzky, S.Y., Stillbirth: Psychosocial implications of an unrecognized issue. Journal of Prenatal & Perinatal Psychology & Health, 2017. 31(3): p. 196–214
  18. Atienza-Carrasco, J., et al., Breaking bad news to antenatal patients with strategies to lessen the pain: A qualitative study. Reproductive Health, 2018. 15(1): p. 11 doi: 10.1186/s12978-018-0454-2.
  19. Moore, B., et al., Walk with me: A bridge program for assisting families expecting babies with fetal anomalies and/or a terminal diagnosis. Neonatal Network, 2020. 39(1): p. 24–28 doi: 10.1891/0730-0832.39.1.24.
  20. Thomas, S., K. O’Loughlin, and J. Clarke, The 21st century sonographer: Role ambiguity in communicating an adverse outcome in obstetric ultrasound. Cogent Medicine, 2017. 4(1): p. 1373903 doi: 10.1080/2331205X.2017.1373903.
  21. Australasian Society for Ultrasound in Medicine. Parent-centred communication guidelines—media release. New guidelines urge improved communication for mums. 2022; Available from: https://www.asum.com.au/media-releases/.
  22. 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.
  23. Steen, S.E., Raising the bar: Development of a perinatal bereavement programme. International Journal of Palliative Nursing, 2019. 25(12): p. 578–586 doi: 10.12968/ijpn.2019.25.12.578.
  24. Bolognani, M., et al., Development of a perinatal palliative care model at a level II perinatal center supported by a pediatric palliative care network. Frontiers in Pediatrics, 2021. 8 doi: 10.3389/fped.2020.574397.
  25. 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.
  26. Jones, E.L. and S.R. Leuthner, Interdisciplinary perinatal palliative care coordination, birth planning, and support of the team, in Perinatal palliative care: A clinical guide, E.M. Denney-Koelsch and D. Côté-Arsenault, Editors. 2020, Springer. p. 333–355.
  27. Kamrath, H.J., et al., Lasting legacy: Maternal perspectives of perinatal palliative care. Journal of Palliative Medicine, 2019. 22(3): p. 310–315 doi: 10.1089/jpm.2018.0303.
  28. Brierley-Jones, L., et al., Supporting parents through stillbirth: A qualitative study exploring the views of health professionals and health care staff in three hospitals in England. European Journal of Obstetrics & Gynecology & Reproductive Biology, 2018. 222: p. 45-51 doi: 10.1016/j.ejogrb.2018.01.007.
  29. Warland, J., Pollock, D., Collier, A., Horey, D., Boyle, F.M., Parents descriptions of labouring with an antepartum fetal death: Findings from the Birthing in Grief study. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2023. doi: 10.1111/ajo.13759.
  30. Warland, J., et al., Parents descriptions of “effective support” when labouring and birthing a stillborn baby: Findings from the Birthing in Grief study [Poster abstract]. Journal of Paediatrics and Child Health, 2022. 58: p. 130–131 doi: 10.1111/jpc.15946
  31. Koopmans, L., et al., Support for mothers, fathers and families after perinatal death. Cochrane Database of Systematic Reviews, 2013(6) doi: 10.1002/14651858.CD000452.pub3.
  32. 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.
  33. Peters, M.D.J., et al., Caring for families experiencing stillbirth: Evidence-based guidance for maternity care providers. Women and Birth, 2015. 28(4): p. 272–278 doi: 10.1016/j.wombi.2015.07.003.
  34. 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/.
  35. American College of Obstetricians and Gynecologists, Management of stillbirth: Obstetric Care Consensus No 10 Obstetrics & Gynecology, 2020. 135(3): p. e110–e132
  36. Boyle, A., et al., Route of delivery in women with stillbirth: Results from the stillbirth collaborative research network. Obstetrics and Gynecology, 2017. 129(4): p. 693-698 doi: 10.1097/AOG.0000000000001935.
  37. Cassidy, P.R., et al., Sedative administration in Spanish hospitals in the context of perinatal loss: findings from a mixed-methods study. Health Sociology Review, 2023. 32(2): p. 228-244 doi: 10.1080/14461242.2022.2131456.
  38. Gold, K.J., et al., Maternal complications associated with stillbirth delivery: A cross-sectional analysis. Journal of Obstetrics and Gynaecology, 2016. 36(2): p. 208–212 doi: 10.3109/01443615.2015.1050646.
  39. Wall-Wieler, E., et al., Severe maternal morbidity among stillbirth and live birth deliveries in California. Obstetrics and Gynecology, 2019. 134(2): p. 310–317 doi: 10.1097/aog.0000000000003370.
  40. Jones, E.E., et al., Continuing bonds following stillbirth: Protective and risk factors associated with parental bereavement adaptation. Journal of Reproductive and Infant Psychology, 2023. 41 (1): p. 93–109 doi: 10.1080/02646838.2021.1972951.
  41. Thornton, R., P. Nicholson, and L. Harms, Scoping review of memory making in bereavement care for parents after the death of a newborn. JOGNN: Journal of Obstetric, Gynecologic & Neonatal Nursing, 2019. 48(3): p. 351–360 doi: 10.1016/j.jogn.2019.02.001.
  42. Akard, T.F., et al., Bereaved mothers’ and fathers’ perceptions of a legacy intervention for parents of infants in the NICU. Journal of Neonatal-Perinatal Medicine, 2018. 11(1): p. 21–28 doi: 10.3233/npm-181732.
  43. Abraham, A. and M.J. Hendriks, “You can only give warmth to your baby when it’s too late”: Parents’ bonding with their extremely preterm and dying child. Qualitative Health Research, 2017. 27(14): p. 2100–2115 doi: 10.1177/1049732317721476.
  44. Ramirez, F.D., et al., Professional bereavement photography in the setting of perinatal loss: A qualitative analysis. Global Pediatric Health, 2019. 6 doi: 10.1177/2333794X19854941.
  45. Rocha Catania, T., et al., When one knows a fetus is expected to die: Palliative care in the context of prenatal diagnosis of fetal malformations. Journal of Palliative Medicine, 2017. 20(9): p. 1020–1031 doi: 10.1089/jpm.2016.0430.
  46. LeDuff, L.D., W.T. Bradshaw, and S.M. Blake, Transitional objects to faciliate grieving following perinatal loss. Advances in Neonatal Care 2017. 17(5): p. 347–353 doi: 10.1097/ANC.0000000000000429.
  47. Fenstermacher, K.H. and J.E. Hupcey, Support for young black urban women after perinatal loss. MCN: The American Journal of Maternal Child Nursing, 2019. 44(1): p. 13–19 doi: 10.1097/NMC.0000000000000485.
  48. Jones, E., Continuing bonds: Parents’ experience of an ongoing relationship with their stillborn baby. Journal of Reproductive and Infant Psychology, 2023. 40(2): p. viii doi: 10.1080/02646838.2022.2037828.
  49. Hendriks, M.J. and A. Abraham, Perinatal loss and parental loneliness: Narratives of late termination of pregnancy. Death Studies, 2021. 46(6): p. 1–11 doi: 10.1080/07481187.2021.1894511.
  50. Kalanlar, B., Hospital practices for parents following perinatal loss. Omega (Westport), 2020. 82(1): p. 92–104 doi: 10.1177/0030222818803809.
  51. Thornton, R., P. Nicholson, and L. Harms, Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia. Journal of Pediatric Nursing, 2020. 53: p. 29–35 doi: 10.1016/j.pedn.2020.04.006.
  52. Jesus, R.C.d.A., et al., Pictures as mementos after perinatal death: a case study. International Journal of Palliative Nursing, 2022. 28(5): p. 208–213 doi: 10.12968/ijpn.2022.28.5.208.
  53. Tovey, R. and S. Turner, Stillbirth memento photography. Journal of Visual Communication in Medicine, 2020. 43(1): p. 2–16 doi: 10.1080/17453054.2019.1691439.
  54. Al Mutair, A., et al., Supporting Muslim families before and after a death in neonatal and paediatric intensive care units. Nursing in Critical Care, 2019. 24(4): p. 192-200 doi: 10.1111/nicc.12434.
  55. Indigenous Research Management Team Stillbirth CRE. Report on the perception and prevention of stillbirth in Aboriginal and Torres Strait Islander communities in Australia, and resultant proposed approach for co-design of prevention resources. 2022.
  56. Sun, J.C., et al., Care and management of stillborn babies from the parents’ perspective: A phenomenological study. Journal of Clinical Nursing (John Wiley & Sons, Inc.), 2022. 31(7/8): p. 860-868 doi: 10.1111/jocn.15936.
  57. Lewis, C., et al., Minimally invasive autopsy for fetuses and children based on a combination of post-mortem MRI and endoscopic examination: A feasibility study. Health Technology Assessment, 2019. 23(46) doi: 10.3310/hta23460.
  58. Kilcullen, M., et al., Decisions to consent for autopsy after stillbirth: Aboriginal and Torres Strait Islander women’s experiences. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2020. 60(3): p. 350-354 doi: 10.1111/ajo.13052.
  59. Alaradi, M., M.H. Hutti, and N. Chaffin, Arab Muslims’ perceptions of perinatal loss care in the United States of America. Health & Social Care in the Community, 2022. 30(5): p. 1838–1846 doi: 10.1111/hsc.13563.
  60. NHMRC Centre for Research Excellence in Stillbirth. Report of how stillbirth is perceived by migrant & refugee communities in Australia and outline of proposed co-design approach. 2022.
  61. 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.
  62. Ayebare, E., et al., The impact of cultural beliefs and practices on parents’ experiences of bereavement following stillbirth: A qualitative study in Uganda and Kenya. BMC Pregnancy & Childbirth, 2021. 21(1): p. 1-10 doi: 10.1186/s12884-021-03912-4.
  63. Farrales, L.L., et al., What bereaved parents want health care providers to know when their babies are stillborn: A community-based participatory study. BMC Psychology, 2020. 8(1): p. 18 doi: 10.1186/s40359-020-0385-x.
  64. Arach, A.A.O., et al., “Your heart keeps bleeding”: Lived experiences of parents with a perinatal death in Northern Uganda. BMC Pregnancy & Childbirth, 2022. 22(1): p. 1-13 doi: 10.1186/s12884-022-04788-8.
  65. Carroll, K., et al., The “Lactation After Infant Death (AID) Framework”: A guide for online health information provision about lactation after stillbirth and infant death. Journal of Human Lactation, 2020. 36(3): p. 480–491 doi: 10.1177/0890334420926946.
  66. Kennedy, J., et al., Lactation following bereavement: How can midwives support women to make informed choices? MIDIRS Midwifery Digest, 2017. 27(4): p. 497-501
  67. 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.
  68. Australian Breastfeeding Association. Lactation after your baby dies. 2023; Available from: https://www.breastfeeding.asn.au/resources/lactation-after-your-baby-dies.
  69. Noble-Carr, D., et al., Providing lactation care following stillbirth, neonatal and infant death: Learning from bereaved parents. Breastfeeding Medicine, 2023. 18(4): p. 254–264 doi: 10.1089/bfm.2022.0242.
  70. Huberty, J., et al., Online yoga to reduce post traumatic stress in women who have experienced stillbirth: A randomized control feasibility trial. BMC Complementary Medicine & Therapies, 2020. 20(1): p. 1–19 doi: 10.1186/s12906-020-02926-3.
  71. Bond, D., C. Raynes‐Greenow, and A. Gordon, Bereaved parents’ experience of care and follow‐up after stillbirth in Sydney hospitals. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2018. 58(2): p. 185–191 doi: 10.1111/ajo.12684.
  72. Flenady, V., et al., Stillbirths: Recall to action in high-income countries. Lancet, 2016. 387(10019): p. 691–702 doi: 10.1016/s0140-6736(15)01020-x.
  73. Camacho Ávila, M., et al., Parents’ experiences about support following stillbirth and neonatal death. Advances in Neonatal Care, 2020. 20(2): p. 151–160 doi: 10.1097/anc.0000000000000703.
  74. Due, C., et al., Australian heterosexual women’s experiences of healthcare provision following a pregnancy loss. Women and Birth, 2018. 31(4): p. 331-338 doi: 10.1016/j.wombi.2017.11.002.
  75. Kothari, A., et al., Dads in distress: Symptoms of depression and traumatic stress in fathers following poor fetal, neonatal, and maternal outcomes. BMC Pregnancy and Childbirth, 2022. 22(1): p. 956 doi: 10.1186/s12884-022-05288-5.
  76. Cole, J.C.M., et al., Developing an infrastructure for bereavement outreach in a maternal-fetal care center. Fetal Diagnosis and Therapy, 2020. 47(12): p. 960–965 doi: 10.1159/000507480.
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  78. Imrie, A.-M. Navigating your return to work can be difficult after your baby dies. n.d. ; Available from: https://stillbirthfoundation.org.au/help-and-support/returning-to-work-after-stillbirth/.
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