Support for mothers, fathers and families after perinatal death

Cochrane Database of Systematic Reviews

Volumn 2013, Issue 6, 2013, Pages

  Koopmans, Laura ^a   Wilson, Trish ^b   Cacciatore, Joanne ^c   Flenady, Vicki ^a  

^a MATER MEDICAL RESEARCH INSTITUTE   (Australia)

^b MATER MOTHERS HOSPITAL   (Australia)

^c ARIZONA STATE UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

BEREAVEMENT COUNSELING; BEREAVEMENT SUPPORT; DESCRIPTIVE RESEARCH; FAMILY RELATION; FETUS DEATH; GENETIC SCREENING; HUMAN; PALLIATIVE THERAPY; PERINATAL DEATH; POSTTRAUMATIC STRESS DISORDER; PRACTICE GUIDELINE; PRIORITY JOURNAL; PSYCHOTHERAPY; REVIEW; SAMPLE SIZE; SOCIAL SUPPORT; SYSTEMATIC REVIEW; BEREAVEMENT; COUNSELING; DEATH; LIFE EVENT; NEWBORN; NUCLEAR FAMILY;

BEREAVEMENT; COUNSELING; DEATH; HUMANS; INFANT, NEWBORN; LIFE CHANGE EVENTS; NUCLEAR FAMILY; SOCIAL SUPPORT;

EID: 84891723281     PISSN: 14651858     EISSN: None     Source Type: Journal    
DOI: 10.1002/14651858.CD000452.pub3     Document Type: Review

References (120)

1. Forrest GC, Standish E, Baum JD. Support after perinatal death: a study of support and counselling after perinatal bereavement. British Medical Journal 1982;285(6353):1475-9.
2. Lake MF, Johnson TM, Murphy J, Knuppel RA. Evaluation of a perinatal grief support team. American Journal of Obstetrics and Gynecology 1987;157(5):1203-6.
3. Lilford RJ, Stratton P, Godsil S, Prasad A. A randomised trial of routine versus selective counselling in perinatal bereavement from congenital disease. British Journal of Obstetrics and Gynaecology 1994;101(4):291-6.
4. Kersting A, Kroker K, Schlicht S, Baust K, Wagner B. Efficacy of cognitive behavioral internet-based therapy in parents after the loss of a child during pregnancy: pilot data from a randomized controlled trial. Archives of Women's Mental Health 2011;14(6):465-77.
5. Ambuehl E. Psychosocial care of mothers after stillbirth. Lancet 2002;360(9345):1601; author reply 1601-2.
6. Armentrout D. Living with grief following removal of infant life support: parents' perspectives. Critical Care Nursing Clinics of North America 2009;21(2):253-65.
7. Badenhorst W, Riches S, Turton P, Hughes P. The psychological effects of stillbirth and neonatal death on fathers: systematic review. Journal of Psychosomatic Obstetrics and Gynaecology 2006;27(4):245-56.
8. Badenhorst W, Hughes P. Psychological aspects of perinatal loss. Best Practice and Research. Clinical Obstetrics and Gynaecology 2007;21(2):249-59.
9. Baker AM, Crandall L. To hold or not to hold. Forensic Science, Medicine and Pathology 2009;5(4):321-3.
10. Balaguer A, Martin-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatric 2012;12:25.
11. Bonanno GA, Kaltman S. The varieties of grief experience. Clinical Psychology Review 2001;21(5):705-34.
12. Bonanno GA. Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events?. American Psychologist 2004;59(1):20-8.
13. Breeze ACG, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM. Palliative care for prenatally diagnosed lethal fetal abnormality. Archives of Disease in Childhood. Fetal and Neonatal Edition 2007;92(1):F56-F58.
14. Brooks D. Psychosocial care of mothers after stillbirth. Lancet 2002;360(9345):1601; author reply 1601-2.
15. Buchi S, Morgeli H, Schnyder U, Jenewein J, Hepp U, Jina E, et al.Grief and post-traumatic growth in parents 2-6 years after the death of their extremely premature baby. Psychotherapy and Psychosomatics 2007;76(2):106-14.
16. Buchi S, Morgeli H, Schnyder U, Jenewein J, Glaser A, Fauchere JC, et al.Shared or discordant grief in couples 2-6 years after the death of their premature baby: effects on suffering and posttraumatic growth. Psychosomatics 2009;50(2):123-30.
17. Burnett P, Middleton W, Raphael B, Martinek N. Measuring core bereavement phenomena. Psychological Medicine 1997;27(1):49-57.
18. Butler RJ, Neimeyer RA. Constructions of death and loss: a personal and professional evolution. Reflections in Personal Construct Theory. Chichester, West Sussex, UK: John Wiley & Sons Ltd, 2012.
19. Cacciatore J. Effects of support groups on post traumatic stress responses in women experiencing stillbirth. Omega (Westport) 2007;55(1):71-90.
20. Cacciatore J, DeFrain J, Jones KLC, Jones H. Stillbirth and the couple: a gender-based exploration. Journal of Family Social Work 2008;11(4):351-70.
21. Cacciatore J, Radestad I, Froen F. Effects of contact with stillborn babies on maternal anxiety and depression. Birth 2008;35(4):313-20.
22. Chichester M. Multicultural issues in perinatal loss. AWHONN Lifelines/Association of Women's Health, Obstetric and Neonatal Nurses 2005;9(4):312-20.
23. DeFrain J, Martens L, Stork J, Stork W. The psychological effects of a stillbirth on surviving family members. Omega: Journal of Death and Dying 1990;22(2):81-108.
24. Doka KJ. Disenfranchised grief. Bereavement Care 1999;18(3):37-9.
25. Evans N. Reorientation of care in the NICU: an Australian perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):311-2.
26. Fish W. Differences in grief intensity in bereaved parents. Champaigne, IL: Research Press Company, 1986.
27. Flenady V, King J, Charles A, Gardener G, Ellwood D, Day K, et al.PSANZ Clinical practice guideline for perinatal mortality. Perinatal Mortality Grouphttp://www.psanzpnmsig.org.au. Perinatal Society of Australia and New Zealand, April 2009; Vol. Version 2.2.
28. Flenady V, Middleton P, Smith GC, Duke W, Erwich JJ, Khong TY, et al.Stillbirths: the way forward in high-income countries. Lancet 2011;377(9778):1703-17.
29. Flenady V, Koopmans L, Middleton P, Frøen JF, Smith GC, Gibbons K, et al.Major risk factors for stillbirth in high-income countries: a systematic review and meta-analysis. Lancet 2011;377(9774):1331-40.
30. Forrest G. Care of the bereaved after perinatal death. In: Chalmers I, Enkin MW, Keirse MJNC editor(s). Effective Care in Pregnancy and Childbirth. Oxford: Oxford University Press, 1989:1423-30.
31. Froen JF, Cacciatore J, McClure EM, Kuti O, Jokhio AH, Islam M, et al.Stillbirths: why they matter. Lancet 2011;377(9774):1353-66.
32. Gatrad AR, Muhammad BJ, Sheikh A. Reorientation of care in the NICU: a Muslim perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):312-4.
33. Giles P. Reactions of women to perinatal death. Australian and New Zealand Journal of Obstetrics and Gynaecology 1970;10(4):207-10.
34. Glanz K, Rimer BK, Viswanath K. Health Behavior and Health Education: Theory, Research, and Practice. San Francisco CA, US: Jossey-Bass, 2008.
35. Gold KJ, Dalton VK, Schwenk TL. Hospital care for parents after perinatal death. Obstetrics and Gynecology 2007;109(5):1156-66.
36. Gold KJ, Schwenk TL, Johnson TRB. Brief report: sedatives for mothers of stillborn infants: views from a national survey of obstetricians. Journal of Women's Health 2008;17(10):1605-7.
37. Gold, KJ, Sen A, Hayward RA. Marriage and cohabitation outcomes after pregnancy loss. Pediatrics 2010;125(5):e1202-e1207.
38. Gravensteen IK, Helgadottir LB, Jacobsen EM, Sandset PM, Ekeberg Ø. Long-term impact of intrauterine fetal death on quality of life and depression: a case-control study. BMC Pregnancy and Childbirth 2012;12:43.
39. Gündel H, O'Connor MF, Littrel L, Fort C, Lane RD. Functional neuroanatomy of grief: an fMRI study. American Journal of Psychiatry 2003;160(11):1946-53.
40. Harper MB, Wisian NB. Care of bereaved parents: a study of patient satisfaction. Journal of Reproductive Medicine 1994;39(2):80-6.
41. Henley A, Schott J. The death of a baby before, during or shortly after birth: good practice from the parents' perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):325-8.
42. Higgins JPT, Green S (Eds). Cochrane Handbook for Systematic Reviews of Interventions. Version 5.1.0 [updated March 2011]. The Cochrane Collaboration. Available from www.cochrane-handbook.org 2011.
43. Hughes P, Turton P, Hopper E, Evans CDH. Assessment of guidelines for good practice in psychosocial care of mothers after stillbirth: a cohort study. Lancet 2002;360(9327):114-8.
44. Hughes P, Riches S. Psychological aspects of perinatal loss. Current Opinion in Obstetrics and Gynecology 2003;15(2):107-11.
45. Husain F. Ethical dimensions of non-aggressive fetal management: a Muslim perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):323-4.
46. Hutti MH. Social and professional support needs of families after perinatal loss. Journal of Obstetric, Gynecologic and Neonatal Nursing 2005;34(5):630-8.
47. Janzen L, Cadell S, Westhues A. From death notification through the funeral: bereaved parents' experience and their advice to professionals. Omega: Journal of Death and Dying 2003-2004;48(2):149-64.
48. Kaempf JW, Tomlinson MW, Campbell B, Ferguson L, Stewart VT. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics 2009;123(6):1509-15.
49. Kain VJ. Palliative care delivery in the NICU: what barriers do neonatal nurses face?. Neonatal Network 2006;25(6):387-92.
50. Kamm S, van den Berg B. Grief communication, grief reactions, and marital satisfaction in bereaved parents. Death Studies 2001;25(7):569-82.
51. Keane TM, Marx BP, Sloan DM. Post-traumatic stress disorder: definition, prevalence, and risk factors. In: Shiromani PJ, Keane TM, LeDoux JE editor(s). Post-traumatic Stress Disorder: Basic Science and Clinical Practice. New York: Humana Press, 2009:1-19.
52. Kennell JH, Slyter J, Klaus MH. The mourning responses of parents to the death of a newborn infant. New England Journal of Medicine 1970;283(7):344-9.
53. Kersting A, Fisch S, Baez E. Psychosocial care of mothers after stillbirth. Lancet 2002;360(9345):1600; author reply 1601-2.
54. Kersting A, Reutemann M, Ohrmann P, Baez E, Klockenbusch W, Lanczik M, et al.Grief after termination of pregnancy due to fetal malformation. Journal of Psychosomatic Obstetrics and Gynaecology 2004;25(2):163-9.
55. Kersting A, Kroker K, Steinhard J. Does abortion technique influence the course of perinatal grief in second trimester termination for fetal anomalies?. American Journal of Obstetrics and Gynecology 2006;194(6):1743.
56. Kersting A, Kroker K, Steinhard J, Ludorff K, Wesselmannn U, Ohrmann P, et al.Complicated grief after traumatic loss: a 14-month follow up study. European Archives of Psychiatry and Clinical Neuroscience 2007;257(8):437-43.
57. Kersting A, Schlicht S, Kroker K. [Internet therapy. Opportunities and boundaries]. Nervenarzt 2009;80(7):797-804.
58. Kersting A, Kroker K, Schlicht S, Wagner B. Internet-based treatment after pregnancy loss: concept and case study. Journal of Psychosomatic Obstetrics & Gynecology 2011;32(2):72-8.
59. Kirkley-Best E, Kellner KR. The forgotten grief: a review of the psychology of stillbirth. American Journal of Orthopsychiatry 1982;52(3):420-9.
60. Klass D, Silverman PR, Nickman SL. Continuing Bonds: New Understandings of Grief. Philadelphia PA, US: Taylor & Francis, 1996.
61. Klass D. The Spiritual Lives of Bereaved Parents. Philadelphia, US: Brunner/Mazel, 1999.
62. Knaevelsrud C, Maercker A. Internet-based treatment for PTSD reduces distress and facilitates the development of a strong therapeutic alliance: a randomized controlled clinical trial. BMC Psychiatry 2007;7:13.
63. Korenromp MJ, Page-Christiaens GC, van den Bout J, Mulder EJ, Hunfeld JA, Bilardo CM, et al.Psychological consequences of termination of pregnancy for fetal anomaly: similarities and differences between partners. Prenatal Diagnosis 2005;25(13):1226-33.
64. Korenromp MJ, Page-Christiaens GC, van den Bout J, Mulder EJ, Hunfeld JA, Potters CM, et al.A prospective study on parental coping 4 months after termination of pregnancy for fetal anomalies. Prenatal Diagnosis 2007;27(8):709-16.
65. Laing IA, Freer Y. Reorientation of care in the NICU. Seminars in Fetal and Neonatal Medicine 2008;13(5):305-9.
66. Stillbirth series. Lancet. Available from www.thelancet.com/series/stillbirth 2011.
67. Lange A, Rietdijk D, Hudcovicova M, van de Ven JP, Schrieken B, Emmelkamp PM. Interapy: a controlled randomized trial of the standardized treatment of posttraumatic stress through the internet. Journal of Consulting and Clinical Psychology 2003;71(5):901-9.
68. Lichtenthal WG, Cruess DG, Prigerson HG. A case for establishing complicated grief as a distinct mental disorder in DSM-V. Clinical Psychology Review 2004;24(6):637-62.
69. Lydon-Rochelle M, Holt VL, Easterling TR, Martin DP. Risk of uterine rupture during labor among women with a prior cesarean delivery. New England Journal of Medicine 2001;345(1):3-8.
70. Mashegoane S, Mabasa L, Mashego T. Stillbirth grief in hospital settings: assessing the intervention practices of professional helpers. In: Madu S, Baguma P, Pritz A editor(s). Cross-cultural Dialogue on Psychotherapy in Africa. Sovenga, South Africa: UNIN Pres, 1999:374.
71. Matthews M, Kohner N. Psychosocial care of mothers after stillbirth. Lancet 2002;360(9345):1600; author reply 1601-2.
72. McCabe A. Psychosocial care of mothers after stillbirth. Lancet 2002;360(9345):1600-1; author reply 1601-2.
73. McGraw M, Perlman J. Reorientation of care in the NICU: a United States perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):310-1.
74. Munson D. Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units. Pediatric Clinics of North America 2007;54(5):773-85, xii.
75. Murray JA, Terry DJ. Parental reactions to infant death:the effects of resources and coping. Journal of Social and Clinical Psychology 1999;18(3):341-69.
76. Murray JA, Terry DJ, Vance JC, Battistutta D, Connolly Y. Effects of a program of intervention on parental distress following infant death. Death Studies 2000;24(4):275-305.
77. Najman JM, Vance JC, Boyle F, Embleton G, Foster B, Thearle J. The impact of a child death on marital adjustment. Social Science and Medicine 1993;37(8):1005-10.
78. Neimeyer RA. Grief counselling and therapy: the case for humility. Bereavement Care 2010;29(1):4-7.
79. Nelson LJ. United States law and managing the terminally ill fetus and newborn. Seminars In Fetal and Neonatal Medicine 2008;13(5):301-4.
80. Anonymous. NICE set to change its advice on holding stillborn babies. Paediatric Nursing 2010;22(2):5.
81. O'Neill SM, Kearney PM, Kenny LC, Khashan AS, Henriksen TB, Lutomski JE, et al.Caesarean delivery and subsequent stillbirth or miscarriage: systematic review and meta-analysis. PLoS One 2013;8(1):e54588.
82. Parkes CM. Bereavement: Studies of Grief in Adult Life. London: Tavistock, 1972.
83. Radestad I, Steineck G, Nordin C, Sjogren B. Psychological complications after stillbirth: influence of memories and immediate management: population based study. British Medical Journal 1996;312(7045):1505-8.
84. Radestad I, Surkan PJ, Steineck G, Cnattingius S, Onelov E, Dickman PW. Long-term outcomes for mothers who have or have not held their stillborn baby. Midwifery 2009;25(4):422-9.
85. Ransohoff-Adler M, Berger CS. When newborns die: do we practice what we preach?. Journal of Perinatology 1989;9(3):311-7.
86. Raphael, B. The Anatomy of Bereavement: A Handbook for the Caring Professions. London: Hutchinson, 1984.
87. Rennie JM, Leigh B. The legal framework for end-of-life decisions in the UK. Seminars in Fetal and Neonatal Medicine 2008;13(5):296-300.
88. The Nordic Cochrane Centre, The Cochrane Collaboration. Review Manager (RevMan). 5.2. Copenhagen: The Nordic Cochrane Centre, The Cochrane Collaboration, 2012.
89. Robinson M, Baker L, Nackerud L. The relationship of attachment theory and perinatal loss. Death Studies 1999;23(3):257-70.
90. Samuelsson M, Radestad I, Segesten K. A waste of life: fathers' experience of losing a child before birth. Birth 2001;28(2):124-30.
91. Stillbirth, Neonatal Death Support (SANDS). Seeing and holding your baby - Campaign update. http://www.uk-sands.org/improving-care/information-for-health-professionals/seeing-and-holding-a-stillborn-baby-update.html 2010 June 25.
92. Schulze A, Wermuth I. Compassionate care for terminally ill term and preterm infants. Zeitschrift fur Geburtshilfe und Neonatologie 2007;211(2):54-9.
93. Scully JL, Porz R, Rehmann-Sutter C. 'You don't make genetic test decisions from one day to the next': using time to preserve moral space. Bioethics 2007;21(4):201-17.
94. Shear, K, Frank E, Houck PR, Reynolds CF. Treatment of complicated grief: a randomized controlled trial. JAMA 2005;293(21):2601-8.
95. Shear, MK, Simon N, Wall M, Zisook S, Neimeyer R, Duan N, et al.Complicated grief and related bereavement issues for DSM-5. Depression and Anxiety 2011;28(2):103-17.
96. Shinwell ES, Shinwell AR. Reorientation of care in the NICU: a Jewish perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):314-5.
97. Shreffler K, Hill T, Cacciatore J. The impact of infertility, miscarriage, stillbirth, and child death on marital dissolution. Journal of Divorce and Remarriage 2012;53(2):91-107.
98. Silver RM, Heuser CC. Stillbirth workup and delivery management. Clinical Obstetrics and Gynecology 2010;53(3):681-90.
99. Sloan EP, Kirsh S, Mowbray M. Viewing the fetus following termination of pregnancy for fetal anomaly. Journal of Obstetric Gynecologic and Neonatal Nursing 2008;37(4):395-404.
100. Steer P. Ethical dimensions of non-aggressive fetal management: a UK perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):320-1.
101. Stroebe M, Schut H. Culture and grief. Bereavement Care 1998;17(1):7-11.
102. Stroebe M, Hansson R, Schut H, Stroebe W. Handbook of Bereavement Research and Practice. Washington DC: American Psychological Association, 2008.
103. Stroebe M, van der Houwen K, Schut H. Bereavement support, intervention and research on the internet: a critical review. In: Stroebe M, Hansson R, Schut H, Stroebe W editor(s). Handbook of Bereavement Research and Practice. Advances in Theory and Intervention. Washington DC, US: American Psychological Association, 2008.
104. Trulsson O, Radestad I. The silent child: mothers' experiences before, during, and after stillbirth. Birth 2004;31(3):189-95.
105. Turton P, Hughes P, Evans CD, Fainman D. The incidence and significance of post traumatic stress disorder in the pregnancy after stillbirth. British Journal of Psychiatry 2001;178:556-60.
106. Turton P, Evans C, Hughes P. Long-term psychosocial sequelae of stillbirth: phase II of a nested case-control cohort study. Archives of Women's Mental Health 2009;12(1):35-41.
107. Umphrey LR, Cacciatore J. Coping with the ultimate deprivation: narrative themes in a parental bereavement support group. Omega (Westport) 2011;63(2):141-60.
108. Vance JC, Boyle FM, Najman JM, Thearle MJ. Couple distress after sudden infant or perinatal death: a 30-month follow up. Journal of Paediatrics and Child Health 2002;38(4):368-72.
109. Vaughan J. Ethical dimensions of non-aggressive fetal management: an Australian perspective. Seminars in Fetal and Neonatal Medicine 2008;13(5):321-3.
110. Villar J, Carroli G, Zavaleta N, Donner A, Wojdyla D, Faundes A, et al.Maternal and neonatal individual risks and benefits associated with caesarean delivery: multicentre prospective study. BMJ (Clinical Research Edition) 2007;335(7628):1025.
111. Wagner B, Knaevelsrud C, Maercker A. Internet-based cognitive-behavioral therapy for complicated grief: a randomized controlled trial. Death Studies 2006;30(5):429-53.
112. Walter T. Grief and culture: a checklist. Bereavement Care 2010;29(2):5-9.
113. Warner J, Metcalfe C, King M. Evaluating the use of benzodiazepines following recent bereavement. British Journal of Psychiatry 2001;178(1):36-41.
114. Williams C, Munson D, Zupancic J, Kirpalani H. Supporting bereaved parents: practical steps in providing compassionate perinatal and neonatal end-of-life care: a North American perspective. Seminars In Fetal & Neonatal Medicine 2008;13(5):335-40.
115. Wing D, Clance P, Burge-Callaway K, Armistead L. Understanding gender difference in bereavement following the death of an infant: implications for treatment. Psychotherapy 2001;38(1):60-72.
116. Zeanah CH, Dailey JV, Rosenblatt MJ, Saller DN. Do women grieve after terminating pregnancies because of fetal anomalies? A controlled investigation. Obstetrics and Gynecology 1993;82(2):270-5.
117. Zeanah CH, Harmon RJ. Perinatal loss and infant mental health: an introduction. Infant Mental Health Journal 2006;16(2):76-9.
118. Zhang B, El-Jawahri A, Prigerson H. Update on bereavement research: evidence-based guidelines for the diagnosis and treatment of complicated bereavement. Journal of Palliative Medicine 2006;9(5):1188-203.
119. Chambers HM, Chan FY. Support for women/families after perinatal death. Cochrane Database of Systematic Reviews 1998, Issue 2. [DOI: 10.1002/14651858.CD000452]
120. Flenady V, Wilson T. Support for mothers, fathers and families after perinatal death. Cochrane Database of Systematic Reviews 2008, Issue 1. [DOI: 10.1002/14651858.CD000452.pub2]