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

Section 4 references

Care around loss - parent resources

  1. Department of Health Western Australia. Perinatal Palliative Care Model of Care. 2015; Available from: https://www.health.wa.gov.au/~/media/Files/Corporate/general%20documents/Health%20Networks/WA%20Cancer%20and%20Palliative%20Care/Palliative%20care/Perinatal-Palliative-Care-Model-of-Care.pdf.
  2. Neonatal Nurses College Aotearoa and New Zealand Nurses Organisation. Comfort as a Model of Care. 2015 October; Available from: https://www.nzno.org.nz/Portals/0/Files/Documents/Groups/Neonatal%20Nurses/Resources/2016-03%20Final%20Neonatal%20Palliative%20Care%20Nov%202015.pdf.
  3. Benini, F., et al., International standards for pediatric palliative care: From IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management, 2022. 63(5): p. e529–e543 doi: 10.1016/j.jpainsymman.2021.12.031.
  4. National Association of Neonatal Nurses. Palliative and End-of-Life Care for Newborns and Infants: Position Statement #3063 2015; Available from: https://nann.org/uploads/About/PositionPDFS/1.4.5_Palliative%20and%20End%20of%20Life%20Care%20for%20Newborns%20and%20Infants.pdf.
  5. Beckstrand, R.L., et al., NICU nurses’ suggestions for improving end-of-life care obstacles. Journal of Neonatal Nursing, 2019. 25(1): p. 32–36 doi: 10.1016/j.jnn.2018.08.004.
  6. Donovan, L.A., et al., Perspectives of health professionals and educators on the outcomes of a national education project in pediatric palliative care: The quality of Care Collaborative Australia. Advances in Medical Education and Practice, 2019. 10: p. 949–958 doi: 10.2147/AMEP.S219721.
  7. Kenner, C., J. Press, and D. Ryan, Recommendations for palliative and bereavement care in the NICU: A family-centered integrative approach. Journal of Perinatology, 2015. 35(1): p. S19–S23 doi: 10.1038/jp.2015.145.
  8. 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.
  9. Wool, C., Systematic review of the literature: Parental outcomes after diagnosis of fetal anomaly. Advances in Neonatal Care, 2011. 11(3): p. 182-1927
  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. Cote-Arsenault, D., E. Denney-Koelsch, and G. Elliott, ‘Creating a safe space’: How perinatal palliative care coordinators navigate care and support for families. International Journal of Palliative Nursing, 2021. 27(8): p. 386–400 doi: 10.12968/ijpn.2021.27.8.386.
  12. 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.
  13. Cole, J.C.M., et al., A proposed model for perinatal palliative care. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 2017. 46(6): p. 904–911 doi: 10.1016/j.jogn.2017.01.014.
  14. Lago, P., et al., Summary of the key concepts on how to develop a perinatal palliative care program. Frontiers in Pediatrics, 2020. 8(596744) doi: 10.3389/fped.2020.596744.
  15. American College of Obstetricians and Gynecologists, Perinatal palliative care: ACOG Committee Opinion, Number 786. Obstetrics & Gynecology, 2019. 134(3): p. e84-e89 doi: 10.1097/aog.0000000000003425.
  16. Falke, M. and L.B. Rubarth, Implementation of a perinatal hospice program. Advances in Neonatal Care, 2021. 203: p. 223-228 doi: 10.1097/ANC.0000000000000755.
  17. Catlin, A. and B. Carter, Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology, 2002. 22(3): p. 184–195 doi: 10.1038/sj.jp.7210687.
  18. Together for Short Lives. A guide to children’s palliative care (4th edition). 2018; Available from: https://www.togetherforshortlives.org.uk/resource/a-guide-to-childrens-palliative-care/.
  19. Cortezzo, D.E., K. Ellis, and A. Schlegel, Perinatal palliative care birth planning as advance care planning. Frontiers in Pediatrics, 2020. 8: p. 556 doi: 10.3389/fped.2020.00556.
  20. Lappeman, M. and L. Swartz, Stillbirth in Khayelitsha Hospital, South Africa: Women’s experiences of care. British Journal of Psychotherapy, 2022. 38(2): p. 353–370 doi: 10.1111/bjp.12722.
  21. Kilcullen, M. and S. Ireland, Palliative care in the neonatal unit: Neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care, 2017. 16: p. 1-12 doi: 10.1186/s12904-017-0202-3.
  22. Humphrey, L.M. and A.B. Schlegel, Longitudinal perinatal palliative care for severe fetal neurologic diagnoses. Seminars in Pediatric Neurology, 2022. 42: p. 100965 doi: 10.1016/j.spen.2022.100965.
  23. 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.
  24. Tewani, K., et al., Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study. Palliative Medicine, 2023. 37(9): p. 1379–1388 doi: 10.1177/02692163231171182.
  25. 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.
  26. New Zealand Paediatric Palliative Care Clinical Network. Paediatric palliative care clinical guidelines. 2019; Available from: https://starship.org.nz/health-professionals/paediatric-palliative-care-clinical-guidelines/.
  27. Côté-Arsenault, D. and E. Denney-Koelsch, “Have no regrets:” Parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Social Science & Medicine, 2016. 154: p. 100–109 doi: 10.1016/j.socscimed.2016.02.033.
  28. Andrews, E., et al., Legacy building in pediatric end-of-life care through innovative use of a digital stethoscope. Palliative Medicine Reports, 2020. 1(1): p. 149–155 doi: 10.1089/pmr.2020.0028.
  29. 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.
  30. Thornton, R., P. Nicholson, and L. Harms, Being a parent: Findings from a grounded theory of memory-making in neonatal end-of-life care. Journal of Pediatric Nursing, 2021. 61: p. 51–58 doi: 10.1016/j.pedn.2021.03.013.
  31. 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.
  32. 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.

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