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

Section 2 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 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. Snaman, J.M., et al., Empowering bereaved parents through the development of a comprehensive bereavement program. Journal of Pain and Symptom Management, 2017. 53(4): p. 767–775 doi: 10.1016/j.jpainsymman.2016.10.359.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. Bereavement Care Standards Review Group. National standards for bereavement care following pregnancy loss and perinatal death. Version 2. 2022; Available from: https://www.hse.ie/eng/services/list/3/maternity/bereavement-care/.
  12. 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.
  13. 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.
  14. 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/.
  15. 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.
  16. Hutti, M.H. and R. Limbo, Using theory to inform and guide perinatal bereavement care. MCN: The American Journal of Maternal Child Nursing, 2019. 44(1): p. 20–26 doi: 10.1097/NMC.0000000000000495.
  17. 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/.
  18. Jackson, P., et al., Fatal fetal anomaly: Experiences of women and their partners. Prenatal Diagnosis, 2023. 43(4): p. 553–562 doi: 10.1002/pd.6311.
  19. 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.
  20. 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.
  21. Goldblatt Hyatt, E.D. and J.L.M. McCoyd, Counseling pregnant people after previous termination of pregnancy for fetal anomaly (TOPFA): The double RAINBOW approach. Anxiety, Stress & Coping, 2022. 36(2): p. 1–15 doi: 10.1080/10615806.2022.2047179.
  22. Armour, S. The lived experience of midwives caring for women facing termination of pregnancy in the late second and third trimester. School of Midwifery, Faculty of Health and Environmental Sciences, Auckland University of Technology 2018. Available from: https://openrepository.aut.ac.nz/handle/10292/12397.
  23. Westby, C.L., et al., Depression, anxiety, PTSD, and OCD after stillbirth: A systematic review. BMC Pregnancy & Childbirth, 2021. 21(1): p. 1–17 doi: 10.1186/s12884-021-04254-x.
  24. Roberts, L., et al., Stillbirth and infant death: Mental health among low-income mothers in Mumbai. BMC Pregnancy & Childbirth, 2021. 21(1): p. 1-11 doi: 10.1186/s12884-021-03754-0.
  25. Brierley-Jones, L., et al., Stillbirth and stigma: The spoiling and repair of multiple social identities. Omega (Westport), 2014. 70(2): p. 143–168 doi: 10.2190/OM.70.2.a.
  26. Gold, K.J., A. Sen, and I. Leon, Whose fault is it anyway? Guilt, blame, and death attribution by mothers after stillbirth or infant death. Illness, Crisis & Loss, 2018. 26(1): p. 40-57 doi: 10.1177/1054137317740800.
  27. Doka, K.J., Disenfranchised grief. Bereavement Care, 1999. 18(3): p. 37–39 doi: 10.1080/02682629908657467.
  28. Pollock, D., et al., Breaking the silence: Determining prevalence and understanding stillbirth stigma. Midwifery, 2021. 93 doi: 10.1016/j.midw.2020.102884.
  29. Lizcano Pabón, L.D.M., M.E. Moreno Fergusson, and A.M. Palacios, Experience of perinatal death from the father’s perspective. Nursing Research, 2019. 68(5): p. E1–E9 doi: 10.1097/nnr.0000000000000369.
  30. McNeil, M.J., et al., Grief and bereavement in fathers after the death of a child: A systematic review. Pediatrics, 2021. 147(4) doi: 10.1542/peds.2020-040386.
  31. Obst, K.L., et al., Factors contributing to men’s grief following pregnancy loss and neonatal death: Further development of an emerging model in an Australian sample. BMC Pregnancy Childbirth, 2021. 21(1): p. 29 doi: 10.1186/s12884-020-03514-6.
  32. 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.
  33. Capitulo, K.L., Evidence for healing interventions with perinatal bereavement. MCN: The American Journal of Maternal/Child Nursing, 2005. 30(6): p. 389–396.
  34. Lockton, J., C. Due, and M. Oxlad, Love, listen and learn: Grandmothers’ experiences of grief following their child’s pregnancy loss. Women & Birth, 2020. 33(4): p. 401–407 doi: 10.1016/j.wombi.2019.07.007.
  35. Lockton, J., M. Oxlad, and C. Due, Grandfathers’ experiences of grief and support following pregnancy loss or neonatal death of a grandchild. Qualitative Health Research, 2021. 31(14): p. 2715–2729 doi: 10.1177/10497323211041331.
  36. Aoun, S.M., et al., Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One, 2015. 10(3): p. e0121101 doi: 10.1371/journal.pone.0121101.
  37. 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/.
  38. 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.
  39. de Andrade Alvarenga, W., et al., Experience of hope: An exploratory research with bereaved mothers following perinatal death. Women and Birth, 2021. 34(4): p. e426-e434 doi: 10.1016/j.wombi.2020.08.011.
  40. Schoonover, K.L., L. Prokop, and M.I. Lapid, Valuable informal bereavement support strategies for bereaved parents of stillborn, young children, and adult children: A scoping review. Journal of Palliative Care, 2022. 37(3): p. 381–400 doi: 10.1177/08258597211062762.
  41. Pachalla, S., et al., Interventions for siblings, extended family, and community members after pediatric death. Journal of Loss & Trauma, 2021. 26(6): p. 519–526 doi: 10.1080/15325024.2020.1838778.
  42. Boyle, F. and J. Dean. Red Nose Hospital to Home Program evaluation final report. 2022; Available from: https://espace.library.uq.edu.au/view/UQ:39f89f6.
  43. Gold, K.J., M.E. Boggs, and K.L. Kavanaugh, MOMSonLINE: Lessons learned from a feasibility RCT of online support for mothers bereaved by perinatal loss. Omega: Journal of Death & Dying, 2021. 83(4): p. 656–672 doi: 10.1177/0030222819861558.
  44. Loughnan, S.A., et al., Living with Loss: Study protocol for a randomized controlled trial evaluating an internet-based perinatal bereavement program for parents following stillbirth and neonatal death. Trials, 2022. 23(1): p. 464 doi: 10.1186/s13063-022-06363-0.
  45. Loughnan, S.A., et al., Findings from a randomised controlled trial evaluating ‘Living with Loss’: An online program to support parents following perinatal loss. Australasian Marcé Society and Helen Mayo House Joint Perinatal Mental Health Conference. 2023: Adelaide Convention Centre, Australia.
  46. Harrop, E., et al., Coping and wellbeing in bereavement: two core outcomes for evaluating bereavement support in palliative care. BMC Palliative Care, 2020. 19(1): p. 29 doi: 10.1186/s12904-020-0532-4.
  47. Burden, C., et al., From grief, guilt pain and stigma to hope and pride – a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth. BMC Pregnancy and Childbirth, 2016. 16(1): p. 9 doi: 10.1186/s12884-016-0800-8.
  48. Kishimoto, M., et al., Factors affecting the grieving process after perinatal loss. BMC Womens Health, 2021. 21(1): p. 313 doi: 10.1186/s12905-021-01457-4.
  49. Cozza, S.J., et al., Optimizing the clinical utility of four proposed criteria for a persistent and impairing grief disorder by emphasizing core, rather than associated symptoms. Psychological Medicine, 2020. 50(3): p. 438-445 doi: 10.1017/s0033291719000254.
  50. Gravensteen, I.K., et al., Anxiety, depression and relationship satisfaction in the pregnancy following stillbirth and after the birth of a live-born baby: A prospective study. BMC Pregnancy and Childbirth, 2018. 18(1): p. 41 doi: 10.1186/s12884-018-1666-8.
  51. Davoudian, T., K. Gibbins, and N.H. Cirino, Perinatal loss: The impact on maternal mental health. Obstetrical & Gynecological Survey, 2021. 76(4): p. 223–233 doi: 10.1097/OGX.0000000000000874.
  52. Tseng, Y.F., et al., Grief reactions of couples to perinatal loss: A one-year prospective follow-up. Journal of Clinical Nursing, 2017. 26(23-24): p. 5133-5142 doi: 10.1111/jocn.14059.
  53. Setubal, M.S., et al., A systematic review of instruments measuring grief after perinatal loss and factors associated with grief reactions. Palliative & Supportive Care, 2021. 19(2): p. 246-256 doi: 10.1017/S1478951520000826.
  54. Güçlü, O., et al., Perinatal grief and related factors after termination of pregnancy for fetal anomaly: One-year follow-up study. Archives of Neuropsychiatry/Noropsikiatri Arsivi, 2021. 58(3): p. 221–227 doi: 10.29399/npa.25110.
  55. Cassidy, P.R., The disenfranchisement of perinatal grief: How silence, silencing and self-censorship complicate bereavement (a mixed methods study). Omega (Westport), 2021 doi: 10.1177/00302228211050500.
  56. Actis Danna, V., et al., Exploring the impact of healthcare workers communication with women who have experienced stillbirth in Malawi, Tanzania and Zambia. A grounded theory study. Women and Birth, 2023. 36: p. e25–e35 doi: 10.1016/j.wombi.2022.04.006.
  57. Hanschmidt, F., et al., Stigma in the context of pregnancy termination after diagnosis of fetal anomaly: associations with grief, trauma, and depression. Archives of Women’s Mental Health, 2018. 21(4): p. 391-399 doi: 10.1007/s00737-017-0807-9.
  58. Weng, S.C., et al., Do stillbirth, miscarriage, and termination of pregnancy increase risks of attempted and completed suicide within a year? A population-based nested case-control study. BJOG: An International Journal of Obstetrics and Gynaecology, 2018. 125(8): p. 983–990 doi: 10.1111/1471-0528.15105.
  59. Shaohua, L. and S. Shorey, Psychosocial interventions on psychological outcomes of parents with perinatal loss: A systematic review and meta-analysis. International Journal of Nursing Studies, 2021. 117(103871) doi: 10.1016/j.ijnurstu.2021.103871.
  60. Durrmeyer, X., et al., Delivery room deaths of extremely preterm babies: An observational study. Archives of Disease in Childhood: Fetal and Neonatal Edition, 2017. 102(2): p. F98-F103 doi: 10.1136/archdischild-2016-310718.
  61. Inati, V., et al., A survey of the experiences of families with bereavement support services following a perinatal loss. Australian & New Zealand Journal of Obstetrics & Gynaecology, 2018. 58(1): p. 54–63 doi: 10.1111/ajo.12661.
  62. Kersting, A., et al., Brief internet-based intervention reduces posttraumatic stress and prolonged grief in parents after the loss of a child during pregnancy: a randomized controlled trial. Psychotherapy and psychosomatics, 2013. 82(6): p. 372–381.
  63. Cacciatore, J., S. Schnebly, and J.F. Froen, The effects of social support on maternal anxiety and depression after stillbirth. Health and Social Care in the Community, 2009. 17(2): p. 167–176 doi: 10.1111/j.1365-2524.2008.00814.x.
  64. Christiansen, D.M., A. Elklit, and M. Olff, Parents bereaved by infant death: PTSD symptoms up to 18 years after the loss. General Hospital Psychiatry, 2013. 35(6): p. 605–611 doi: 10.1016/j.genhosppsych.2013.06.006.
  65. Horsch, A., I. Jacobs, and K. McKenzie-McHarg, Cognitive predictors and risk factors of PTSD following stillbirth: A short-term longitudinal study. Journal of Traumatic Stress, 2015. 28(2): p. 110–117 doi: 10.1002/jts.21997.
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