Advertisement

Family Bereavement Care in Pediatric Oncology

  • Malin LövgrenEmail author
  • Josefin Sveen
Chapter
  • 944 Downloads
Part of the Pediatric Oncology book series (PEDIATRICO)

Abstract

Studies have shown that grief after losing a child is more intense and prolonged than after the loss of a spouse or a parent. Children are expected to outlive their parents, and losing one’s child has been described as one of the most traumatic experiences possible. While a majority of bereaved parents adjust to the loss of a child without professional help, a significant minority will experience persistent and intensive grief reactions and may need treatment. Siblings are often called “the forgotten grievers” based on the idea that they are not the focus of family, friends, and health-care professionals, who often primarily focus on the ill child and the parents. Unfortunately, research has shown that a majority of siblings still grieve many years after the loss. As research shows that long-term psychological morbidity, including grief, among parents and siblings is affected by modifiable and/or avoidable factors during illness, end of life, and after the loss, family bereavement care should start early and beyond the child’s death. This chapter describes factors that can contribute to the psychological outcomes for parents and siblings after bereavement. Symptom management in the end of life has shown important as well as a good relationship between the health-care professionals and the parents/siblings during the illness trajectory. Parents and siblings need open and honest communication relating to diagnosis, prognosis, and impending death as it allows them to better prepare for the loss—something that are important for their psychological well-being years after bereavement. Bereavement support for the family after the loss is also described in this chapter. For example, it is important for families to have access to the care team after the loss of the child as they have expressed a need for, e.g., remembrance ceremonies and for obtaining more knowledge about the end-of-life care. Parent support groups are much appreciated by the parents but lack evaluation of their effect. This is also the case for sibling camps. As much of bereavement care is not evidence based, or not even theoretically based, more research is needed in order to better facilitate the grieving process and long-term psychological well-being for parents and siblings.

Keywords

Bereavement Bereavement care Grief Family Parent Sibling 

References

  1. Andersson G, Titov N (2014) Advantages and limitations of Internet-based interventions for common mental disorders. World Psychiatry 13(1):4–11PubMedPubMedCentralCrossRefGoogle Scholar
  2. Barrera M et al (2013) Parental perceptions of siblings' grieving after a childhood cancer death: a longitudinal study. Death Studies 37(1):25–46PubMedCrossRefGoogle Scholar
  3. Birenbaum LK (2000) Assessing children's and teenagers' bereavement when a sibling dies from cancer: a secondary analysis. Child Care Health Dev 26(5):381–400PubMedCrossRefGoogle Scholar
  4. Boelen PA et al (2007) Treatment of complicated grief: a comparison between cognitive-behavioral therapy and supportive counseling. J Consult Clin Psychol 75(2):277–284PubMedCrossRefGoogle Scholar
  5. Bonanno GA, Kaltman S (2001) The varieties of grief experience. Clin Psychol Rev 21(5):705–734PubMedCrossRefGoogle Scholar
  6. Bowlby J (1970) Attachment and loss: separation, anxiety and anger, vol 1. Hogarth Press, LondonGoogle Scholar
  7. Bradley-Eilertsen M-E et al (2016) Cancer-bereaved siblings’ positive and negative memories and experiences of their brother’s or sister’s illness and death (unpublished manuscript). Karolinska Institutet, StockholmGoogle Scholar
  8. Bryant RA et al (2014) Treating prolonged grief disorder: a randomized clinical trial. JAMA Psychiatry 71(12):1332–1339PubMedCrossRefGoogle Scholar
  9. Buckley T et al (2012) Physiological correlates of bereavement and the impact of bereavement interventions. Dialogues Clin Neurosci 14(2):129–139PubMedPubMedCentralGoogle Scholar
  10. deCinque N et al (2006) Bereavement support for families following the death of a child from cancer: experience of bereaved parents. J Psychosoc Oncol 24(2):65–83PubMedCrossRefGoogle Scholar
  11. Clute MA, Kobayashi R (2013) Are children's grief camps effective? J Soc Work End Life Palliat Care 9(1):43–57PubMedCrossRefGoogle Scholar
  12. Conte TM (2011) Pediatric oncology nurse and grief education: a telephone survey. J Pediatr Oncol Nurs 28(2):93–99PubMedCrossRefGoogle Scholar
  13. Currier JM, Neimeyer RA, Berman JS (2008) The effectiveness of psychotherapeutic interventions for bereaved persons: a comprehensive quantitative review. Psychol Bull 134(5):648–661PubMedCrossRefGoogle Scholar
  14. D'Agostino NM et al (2008) Bereaved parents' perspectives on their needs. Palliat Support Care 6(1):33–41PubMedCrossRefGoogle Scholar
  15. Darbyshire P et al (2013) Supporting bereaved parents: a phenomenological study of a telephone intervention programme in a paediatric oncology unit. J Clin Nurs 22(3–4):540–549PubMedCrossRefGoogle Scholar
  16. Donovan LA et al (2015) Hospital-based bereavement services following the death of a child: a mixed study review. Palliat Med 29(3):193–210PubMedCrossRefGoogle Scholar
  17. Downar J, Barua R, Sinuff T (2014) The desirability of an intensive care unit (ICU) clinician-led bereavement screening and support program for family members of ICU decedents (ICU bereave). J Crit Care 29(2):311e9–31116CrossRefGoogle Scholar
  18. Drew D et al (2005) Parental grieving after a child dies from cancer: is stress from stem cell transplant a factor? Int J Palliat Nurs 11(6):266–273PubMedCrossRefGoogle Scholar
  19. Dussel V et al (2009) Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 37(1):33–43PubMedCrossRefGoogle Scholar
  20. Eilegard A, Kreicbergs U (2010) Risk of parental dissolution of partnership following the loss of a child to cancer: a population-based long-term follow-up. Arch Pediatr Adolesc Med 164(1):100–101PubMedCrossRefGoogle Scholar
  21. Eilegård A et al (2013) Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier. Psycho-oncology 22(3):683–691PubMedCrossRefGoogle Scholar
  22. Eilertsen ME et al (2013) Impact of social support on bereaved siblings' anxiety: a nationwide follow-up. J Pediatr Oncol Nurs 30(6):301–310PubMedCrossRefGoogle Scholar
  23. Endo K, Yonemoto N, Yamada M (2015) Interventions for bereaved parents following a child's death: a systematic review. Palliat Med 29(7):590–604PubMedCrossRefGoogle Scholar
  24. Fletcher J et al (2013) A sibling death in the family: common and consequential. Demography 50(3):803–826PubMedPubMedCentralCrossRefGoogle Scholar
  25. Foster TL et al (2011) Comparison of continuing bonds reported by parents and siblings after a child's death from cancer. Death Stud 35(5):420–440PubMedPubMedCentralCrossRefGoogle Scholar
  26. Foster TL et al (2012) Changes in siblings after the death of a child from cancer. Cancer Nurs 35(5):347–354PubMedPubMedCentralCrossRefGoogle Scholar
  27. Gaab EM, Owens GR, MacLeod RD (2014) Siblings caring for and about pediatric palliative care patients. J Palliat Med 17(1):62–67PubMedCrossRefGoogle Scholar
  28. van der Geest IM et al (2014) Parents' experiences of pediatric palliative care and the impact on long-term parental grief. J Pain Symptom Manage 47(6):1043–1053PubMedCrossRefGoogle Scholar
  29. Gerhardt CA et al (2012) Peer relationships of bereaved siblings and comparison classmates after a child's death from cancer. J Pediatr Psychol 37(2):209–219PubMedCrossRefGoogle Scholar
  30. Gerrish NJ, Steed LG, Neimeyer RA (2010) Meaning reconstruction in bereaved mothers: a pilot study using the biographical grid method. J Constr Psychol 23(2):118.142Google Scholar
  31. Gillies J, Neimeyer RA, Milman E (2014) The meaning of loss codebook: construction of a system for analyzing meanings made in bereavement. Death Stud 38(1–5):207–216PubMedCrossRefGoogle Scholar
  32. Giovanola J (2005) Sibling involvement at the end of life. J Pediatr Oncol Nurs 22(4):222–226PubMedCrossRefGoogle Scholar
  33. Goodenough B et al (2004) Bereavement outcomes for parents who lose a child to cancer: are place of death and sex of parent associated with differences in psychological functioning? Psychooncology 13(11):779–791PubMedCrossRefGoogle Scholar
  34. Gustafsson K, Nolbris M (2006) See-hear-do pictures. Teaching about children’s cancer with cartoon tools. MediaCuben AB, The Swedish Childhood Foundation (Barncancerfonden), StockholmGoogle Scholar
  35. Institute of Medicine (2003) When children die: improving palliative and end-of-life care for children and their families. The National Academies Press, Washington, DCGoogle Scholar
  36. Jalmsell L et al (2010) Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents. Pediatr Blood Cancer 54(5):751–757PubMedGoogle Scholar
  37. Jalmsell L et al (2011) Hematopoietic stem cell transplantation in children with cancer and the risk of long-term psychological morbidity in the bereaved parents. Bone Marrow Transplant 46(8):1063–1070PubMedCrossRefGoogle Scholar
  38. Jalmsell L et al (2015) On the child's own initiative: parents communicate with their dying child about death. Death Stud 39(2):111–117PubMedCrossRefGoogle Scholar
  39. Jenholt Nolbris M, Enskär K, Hellström AL (2014) Grief related to the experience of being the sibling of a child with cancer. Cancer Nurs 37(5):E1–E7PubMedGoogle Scholar
  40. Johnston DL et al (2008) Availability and use of palliative care and end-of-life services for pediatric oncology patients. J Clin Oncol 26(28):4646–4650PubMedCrossRefGoogle Scholar
  41. Jordan JR, Neimeyer RA (2003) Does grief counseling work? Death Stud 27(9):765–786PubMedCrossRefGoogle Scholar
  42. Kato PM, Mann T (1999) A synthesis of psychological interventions for the bereaved. Clin Psychol Rev 19(3):275–296PubMedCrossRefGoogle Scholar
  43. Keene EA et al (2010) Bereavement debriefing sessions: an intervention to support health care professionals in managing their grief after the death of a patient. Pediatr Nurs 36(4):185–189. quiz 190PubMedGoogle Scholar
  44. Kersting A et al (2011) Prevalence of complicated grief in a representative population-based sample. J Affect Disord 131(1–3):339–343PubMedCrossRefGoogle Scholar
  45. Kersting A et al (2013) Brief internet-based intervention reduces posttraumatic stress and prolonged grief in parents after the loss of a child during pregnancy: a randomized controlled trial. Psychother Psychosom 82(6):372–381PubMedCrossRefGoogle Scholar
  46. Knapp CA, Contro N (2009) Family support services in pediatric palliative care. Am J Hosp Palliat Care 26(6):476–482PubMedCrossRefGoogle Scholar
  47. Kreicbergs U et al (2004) Anxiety and depression in parents 4–9 years after the loss of a child owing to a malignancy: a population-based follow-up. Psychol Med 34(8):1431–1441PubMedCrossRefGoogle Scholar
  48. Kreicbergs UC et al (2007) Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol 25(22):3307–3312PubMedCrossRefGoogle Scholar
  49. Lannen PK et al (2008) Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later. J Clin Oncol 26(36):5870–5876PubMedPubMedCentralCrossRefGoogle Scholar
  50. Larcher V et al (2015) Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child 100(Suppl 2):s3–23PubMedCrossRefGoogle Scholar
  51. Li J et al (2003) Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Lancet 361(9355):363–367PubMedCrossRefGoogle Scholar
  52. Lichtenthal WG, Cruess DG, Prigerson HG (2004) A case for establishing complicated grief as a distinct mental disorder in DSM-V. Clin Psychol Rev 24(6):637–662PubMedCrossRefGoogle Scholar
  53. Lichtenthal WG et al (2015a) Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatr Blood Cancer 62(Suppl 5):S834–S869PubMedPubMedCentralCrossRefGoogle Scholar
  54. Lichtenthal WG et al (2015b) Mental health services for parents who lost a child to cancer: if we build them, will they come? J Clin Oncol 33(20):2246–2253PubMedPubMedCentralCrossRefGoogle Scholar
  55. Lindahl Norberg A, Poder U, von Essen L (2011) Early avoidance of disease- and treatment-related distress predicts post-traumatic stress in parents of children with cancer. Eur J Oncol Nurs 15(1):80–84PubMedCrossRefGoogle Scholar
  56. Lövgren M et al (2015) Siblings' experiences of their brother's or sister's cancer death: a nationwide follow-up 2–9 years later. Psycho-oncology 25(4):435–440PubMedCrossRefGoogle Scholar
  57. Lövgren M et al (2016) Bereaved siblings’ advice to health care professionals working with children with cancer and their families. J Pediatr Oncol Nurs 33(4):297–305PubMedCrossRefGoogle Scholar
  58. Lövgren M, Sveen J, Steineck G, Eilegård Wallin A, Eilertsen ME, Kreicbergs U (in press) Spirituality and religious coping are related to cancer-bereaved siblings’ long-term grief. Palliat Support CareGoogle Scholar
  59. Lövgren M, Sveen J, Nyberg T, Eilegård Wallin A, Prigerson Holly G, Steineck G, Kreicbergs U (2017) Care at End of Life Influences Grief: A nationwide long-term follow-up among young adults who lost a brother or sister to childhood cancer. J Palliat Med. Ahead of print. https://doi.org/10.1089/jpm.2017.0029
  60. Mack JW et al (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23(36):9155–9161PubMedCrossRefGoogle Scholar
  61. Mack JW et al (2006) Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol 24(33):5265–5270PubMedCrossRefGoogle Scholar
  62. Macpherson CF (2008) Peer-supported storytelling for grieving pediatric oncology nurses. J Pediatr Oncol Nurs 25(3):148–163PubMedCrossRefGoogle Scholar
  63. Maercker A et al (2013) Proposals for mental disorders specifically associated with stress in the International Classification of Diseases-11. Lancet 381(9878):1683–1685PubMedCrossRefGoogle Scholar
  64. McCarthy MC et al (2010) Prevalence and predictors of parental grief and depression after the death of a child from cancer. J Palliat Med 13(11):1321–1326PubMedCrossRefGoogle Scholar
  65. Middleton W et al (1998) A longitudinal study comparing bereavement phenomena in recently bereaved spouses, adult children and parents. Aust N Z J Psychiatry 32(2):235–241PubMedCrossRefGoogle Scholar
  66. Morris AT et al (2016) The indirect effect of positive parenting on the relationship between parent and sibling bereavement outcomes after the death of a child. J Pain Symptom Manage 51(1):60–70PubMedCrossRefGoogle Scholar
  67. Neimeyer RA et al (2010) Grief therapy and the reconstruction of meaning: from principles to practice. J Contemp Psychother 40(2):73–83CrossRefGoogle Scholar
  68. Nolbris M (2009) Att vara syskon till ett barn eller ungdom med cancersjukdom- Tankar, behov, problem och stöd (To be a sibling to a child or adolescence with cancer: thoughts, needs, problems and support). University of Gothenburg, Gothenburg, Sweden, p 53Google Scholar
  69. Nolbris M, Hellström AL (2005) Siblings' needs and issues when a brother or sister dies of cancer. J Pediatr Oncol Nurs 22(4):227–233PubMedCrossRefGoogle Scholar
  70. Nolbris M et al (2010) The experience of therapeutic support groups by siblings of children with cancer. Pediatr Nurs 36(6):298–304. quiz 305PubMedGoogle Scholar
  71. Prchal A, Landolt MA (2009) Psychological interventions with siblings of pediatric cancer patients: a systematic review. Psychooncology 18(12):1241–1251PubMedCrossRefGoogle Scholar
  72. Prigerson HG, Jacobs SC (2001) Perspectives on care at the close of life. Caring for bereaved patients: "all the doctors just suddenly go". JAMA 286(11):1369–1376PubMedCrossRefGoogle Scholar
  73. Prigerson HG, Vanderwerker LC, Maciejewski PK (2008) A case for the inclusion of prolonged grief disorder in DSM-V. In: Stroebe M et al (eds) Handbook of bereavement research and practice: 21st century perspectives. APA, Washington DC, pp 165–186Google Scholar
  74. Prigerson HG et al (2009) Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med 6(8):e1000121PubMedPubMedCentralCrossRefGoogle Scholar
  75. Rando TA (1983) An investigation of grief and adaptation in parents whose children have died from cancer. J Pediatr Psychol 8(1):3–20PubMedCrossRefGoogle Scholar
  76. Rogers CH et al (2008) Long-term effects of the death of a child on parents' adjustment in midlife. J Fam Psychol 22(2):203–211PubMedPubMedCentralCrossRefGoogle Scholar
  77. Rosenberg AR et al (2012) Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer 58(4):503–512PubMedCrossRefGoogle Scholar
  78. Rosenberg AR et al (2015) Long-term psychosocial outcomes among bereaved siblings of children with cancer. J Pain Symptom Manage 49(1):55–65PubMedCrossRefGoogle Scholar
  79. Rosner R et al (2014) Efficacy of an outpatient treatment for prolonged grief disorder: a randomized controlled clinical trial. J Affect Disord 167:56–63PubMedCrossRefGoogle Scholar
  80. Rostila M, Saarela J, Kawachi I (2012a) Mortality in parents following the death of a child: a nationwide follow-up study from Sweden. J Epidemiol Community Health 66(10):927–933PubMedCrossRefGoogle Scholar
  81. Rostila M, Saarela J, Kawachi I (2012b) The forgotten griever: a nationwide follow-up study of mortality subsequent to the death of a sibling. Am J Epidemiol 176(4):338–346PubMedCrossRefGoogle Scholar
  82. Russo C, Wong AF (2005) The bereaved parent. J Clin Oncol 23(31):8109–8111PubMedCrossRefGoogle Scholar
  83. Salavati B et al (2014) Which siblings of children with cancer benefit most from support groups? Children's Health Care 43:221–233CrossRefGoogle Scholar
  84. Shear MK (2015) Clinical practice. Complicated grief. N Engl J Med 372(2):153–160PubMedCrossRefGoogle Scholar
  85. Shear K et al (2005) Treatment of complicated grief: a randomized controlled trial. JAMA 293(21):2601–2608PubMedCrossRefGoogle Scholar
  86. Sirki K, Saarinen-Pihkala U, Hovi L (2000) Coping of parents and siblings with the death of a child with cancer: death after terminal care compared with death during active anticancer therapy. Acta Paediatrica 89(6):717–721PubMedCrossRefGoogle Scholar
  87. Steele AC et al (2013) Bereaved parents and siblings offer advice to health care providers and researchers. J Pediatr Hematol/Oncol 35(4):253–259CrossRefGoogle Scholar
  88. Stroebe M, Schut H, Stroebe W (2007) Health outcomes of bereavement. Lancet 370(9603):1960–1973PubMedCrossRefGoogle Scholar
  89. Stroebe M et al (2008) Handbook of bereavement research and practice: advances in theory and intervention. American Psychological Association, Washington DCCrossRefGoogle Scholar
  90. Sveen J et al (2014) They still grieve-a nationwide follow-up of young adults 2–9 years after losing a sibling to cancer. Psycho-oncology 23(6):658–664PubMedCrossRefGoogle Scholar
  91. Syse A, Loge JH, Lyngstad TH (2010) Does childhood cancer affect parental divorce rates? A population-based study. J Clin Oncol 28(5):872–877PubMedCrossRefGoogle Scholar
  92. Tedeschi RG, Calhoun LG (1995) Trauma & transformation: growing in the aftermath of suffering. Sage Publications, Thousand Oaks, CACrossRefGoogle Scholar
  93. Thompson AL et al (2011) A qualitative study of advice from bereaved parents and siblings. J Soc Work End Life Palliat Care 7(2–3):153–172PubMedPubMedCentralCrossRefGoogle Scholar
  94. Ullrich CK et al (2010) End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care. Blood 115(19):3879–3885PubMedCrossRefGoogle Scholar
  95. Valdimarsdottir U et al (2007) Parents' intellectual and emotional awareness of their child's impending death to cancer: a population-based long-term follow-up study. Lancet Oncol 8(8):706–714PubMedCrossRefGoogle Scholar
  96. Wagner B, Knaevelsrud C, Maercker A (2006) Internet-based cognitive-behavioral therapy for complicated grief: a randomized controlled trial. Death Studies 30(5):429–453PubMedCrossRefGoogle Scholar
  97. Wallin AE et al (2015) Insufficient communication and anxiety in cancer-bereaved siblings: a nationwide long-term follow-up. Palliat Support Care:1–7Google Scholar
  98. Warnick AL (2015) Supporting youth grieving the dying or death of a sibling or parent: considerations for parents, professionals, and communities. Curr Opin Support Palliat Care 9(1):58–63PubMedCrossRefGoogle Scholar
  99. Wender E, Committee on Psychosocial Aspects of Child and Family Health (2012) Supporting the family after the death of a child. Pediatrics 130(6):1164–1169PubMedCrossRefGoogle Scholar
  100. Wenzel J et al (2011) Working through grief and loss: oncology nurses' perspectives on professional bereavement. Oncol Nurs Forum 38(4):E272–E282PubMedPubMedCentralCrossRefGoogle Scholar
  101. Wiener L et al (2013) Cultural and religious considerations in pediatric palliative care. Palliat Support Care 11(1):47–67PubMedCrossRefGoogle Scholar
  102. Wittouck C et al (2011) The prevention and treatment of complicated grief: a meta-analysis. Clin Psychol Rev 31(1):69–78PubMedCrossRefGoogle Scholar
  103. Zetumer S et al (2015) The impact of losing a child on the clinical presentation of complicated grief. J Affect Disord 170:15–21PubMedCrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations

  1. 1.Department of Caring SciencesPalliative Research Centre, Ersta Sköndal Bräcke University CollegeStockholmSweden

Personalised recommendations