Bereavement and Grief

Key Messages

  • Most people who experience normal grief do not require specialist counselling, but would benefit from reassurance, acknowledgement of their losses, and access to information.
  • A proportion of people who grieve may experience intense distress over a prolonged period.
  • Tools which measure grief responses have reported good reliability and validity but have not been assessed for use in the Australian palliative care setting.
  • Cognitive behavioural therapy-based interventions are being studied in bereavement, and appear to show evidence of benefit. [1]
  • Provision of bereavement support by volunteers may be effective. [2]
  • Cost effectiveness of bereavement services has not been well studied. [3]
  • There is no evidence that grief counselling improves outcomes for people who experience normal grief. [4,5]
  • Risk factors for abnormal grief have been identified but there is no high level evidence relating to prevention.
  • Bereavement risk Index is widely used but formal validation studies are lacking.

  

  

  

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Evidence Summary

Definition and Prevalence

Bereavement refers to the event of death of a person with whom there has been an enduring relationship. Grief is how bereavement affects us personally, with effects across several domains – emotional, cognitive, social, physical, financial and spiritual. Grief often causes disruption and disturbance of everyday life. However, grief can be expressed in very different ways: some people do not experience an intense reaction. Most people experience fluctuating reactions for a period of time while others can develop an intense and prolonged grief response. [6-8] Culture plays a major role in the expression of grief. [4,8,9]

Bereavement in childhood is common. About 5% of children will lose a parent or sibling, and up to 75% will experience the loss of a relative or friend before the age of 16. [10]

Common expressions of grief are varied and can include: [11]

Emotional

  • Depression
  • Anxiety
  • Guilt
  • Anger
  • Loneliness
  • Loss of pleasure
  • Shock and numbness.

Cognitive

  • Thinking all the time about the person who has died
  • A sense that the dead person is still about
  • Denial
  • Hopelessness.

Behavioural

  • Over or under activity
  • Social withdrawal
  • Agitation.

Physiological

  • Loss of appetite
  • Sleep disturbances
  • Tiredness
  • Susceptibility to illness.

For most people, grief is supported over time by a person’s family and friends. [5] Identifying the fact that there may also be positive outcomes of bereavement, including the potential for post-traumatic growth, is a recent development within the field; [12,13] 'resilience' is one of the key concepts that is being used to understand and acknowledge the way that people deal with their grief and bereavement. [14]

Abnormal grief (extreme or prolonged) is addressed in greater detail in the subsection Abnormal Grief. 

Assessment

There is no clear consensus about how screening and assessment for the development of prolonged bereavement should be performed by palliative care services. [15]

Common patterns of response to spousal bereavement have been identified. Spousal loss occurs most frequently in later life, more often affects women, and for many bereaved spouses, it interacts with and compounds other health concerns. Maintaining independence is a common challenge in this situation for older people. [5]

Bereavement is a period of increased mortality for spouses. A meta-analysis has confirmed that men who are widowed are particularly at risk of mortality, and the first six months is the highest risk period. [16] The risk is associated with both expected and unexpected deaths, but social support may reduce the risk. Patient end-of-life interventions may positively influence bereavement outcomes for spouses. [17] The increased risk is unrelated to the age of the bereaved person. Cardiovascular risk for the spouse who survives is increased, particularly in the first few weeks. [18] There may also be a higher risk of stroke in bereaved people, however more research is needed [19] The vulnerability may be due to both the physiological impacts of grief, and also to altered health behaviours. There is evidence that in late-life spousal loss health behaviour changes can affect sleep, alcohol use, and nutritional intake causing involuntary weight loss. [15]

Specific grief considerations for different groups such as parents, [20-22] fathers, [23] children, [24] parents of children with chronic illness, [25] spouses, [26] those from different cultural backgrounds, [3] with intellectual disabilities, [25] in the setting of perinatal loss, [27] and in indigenous populations are areas with limited evidence to support clear recommendations for assessment.

Treatment

There is no evidence that sharing and disclosure of feelings will lead to ‘healthy’ or less intense grieving for those people who experience normal grief reactions. [11] There is also no evidence that grief counselling improves outcomes for people who experience normal grief. [4,28] Most people grieve within their family and friends network and often do not seek out professional support. [28] Therefore, interventions targeted at community awareness around grief and bereavement may be beneficial. [28]

Protective factors in the health outcomes of bereavement may include: [29,30]

  • Responsive health care for the dying patient and reduction of patient distress before death
  • Optimistic and resilient personality characteristics of bereaved individuals
  • Secure relationships with family and community
  • Supportive, positive communication

Bereavement in childhood is not uncommon, as many children will have personal experience with death of family members, or other people they know such as neighbours. [31] Most often this is associated with short term negative impact, but few long-term difficulties. There is some evidence that interventions targeting the parents to support their bereaved children may have improved outcomes and group therapy interventions have also showed some positive effects in children. [29] Children’s books talking about death and dying have also shown positive outcomes, although there is limited content covering a child’s own death. [32]

The death of a child can be particularly traumatic and there is increasing research into bereavement and grief of parents and surviving siblings. [13,33-35] There remains a lack of research into bereavement associated with losing a child from chronic illness. [25] For parents who are grieving the loss of a baby their ability to bond with the deceased child, and create memories of that child have been shown to promote a positive experience. [36,37] 

The impact of caregiving on grief and bereavement is being studied. High levels of social and emotional support can modify bereavement distress, and there is some evidence that receiving support from palliative care services, and home deaths, may improve bereavement outcomes for caregivers. [1,30] The impact a patient’s death has on the health care professionals caring for them has also been studied. [38,39] Issues such as poor role definition, lack of resources and limited training can have a negative impact on nurse’s bereavement. [39]

Abnormal grief is discussed in more detail in a separate section.

Practice Implications

  • Most people who experience normal grief do not require specialist counselling
  • People who experience intense distress over a prolonged period can be referred to -
    • Specialist bereavement counsellors
    • Palliative care services
    • Other mental health professionals with appropriate skills and expertise.

Evidence Gaps

  • Tools which measure grief responses have not been assessed for use in the Australian palliative care setting. [18]
  • There is no clear consensus about how screening and assessment of bereavement risk should be performed by palliative care services. [15]
  • There is a trend in research which is critical of stage-based models of grief that suggest bereaved people ‘move on’ from their grief and relinquish the bond or connection to the dead person. [2,11]
  • Research suggests that normal grief differs from abnormal grief in a variety of ways, and that abnormal grief is distinct from other psychiatric diagnoses such as depression, anxiety and PTSD. Associated assessment tools and new treatment strategies are evolving based on improved understandings of these phenomena. [2,40]
  • Research is needed into the personal profile of those at risk of abnormal grief, including psychological characteristics and interpersonal factors, such as their perception of social and community supports. [9,41] Issues of screening, referral and how to match intervention to the individual require further research.
  • Specific grief considerations for different groups such as parents, [20-22] fathers, [23] children, [24,31] parents of children with chronic illness, [25] spouses, [26] those from different cultural backgrounds, [9] with intellectual disabilities, [25] in the setting of perinatal loss, [27] and in indigenous populations, need further investigation.
  • There is little evidence about the specific experience of people bereaved by suicide. [42]
  • There is limited research into how older people manage bereavement but there is promising evidence to support peer mentorship. [5]
  • Research into the efficacy of bereavement interventions needs attention. While specific bereavement interventions appear to assist those people experiencing abnormal grief, more detail is needed. Cost effectiveness of bereavement services has not been well studied. [3]
  • The grief experiences of health care providers have not been well-studied, but these may have significant impact on health service delivery, and result in both emotional and economic costs to the system. [38,39]
  1. Remedios C, Thomas K, Hudson P. Psychosocial and bereavement support for family caregivers of palliative care patients: A review of the empirical literature (986kb pdf). Melbourne: Centre for Palliative Care; 2011 Jan. 71p.
  2. Neimeyer RA. The changing face of grief: Contemporary directions in theory, research, and practice. Progr Palliat Care. 2014;22(3):125-30.
  3. Arthur A, Wilson E, James M, Stanton W, Seymour J, University of Nottingham. Bereavement care services: a synthesis of the literature. London: Department of Health; 2011 Jan. 73p.
  4. Wilson DM, Dhanji N, Playfair R, Nayak SS, Puplampu GL, Macleod R. A scoping review of bereavement service outcomes. Palliat Support Care. 2017 Apr;15(2):242-259. doi: 10.1017/S147895151600047X. Epub 2016 Jun 29.
  5. Vrkljan B, Montpetit A, Naglie G, Rapoport M, Mazer B. Interventions that support major life transitions in older adulthood: a systematic review. Int Psychogeriatr. 2019 Mar;31(3):393-415. doi: 10.1017/S1041610218000972. Epub 2018 Jul 11.
  6. Christ GH, Bonanno G, Malkinson R, Rubin S. Bereavement experiences after the death of a child. In: Field MJ, Behrman RE, editors. When children die: improving palliative care and end-of-life care for children and their families. Washington, DC: The National Academy Press; 2003.
  7. Wortman CB, Cohen Silver R. The myths of coping with loss revisited. In: Stroebe MS, Hansson RO, Stroebe W. Schut H. Handbook of bereavement research: consequences, coping and care. Washington, DC: American Psychological Association; 2001.
  8. Lundorff M, Holmgren H, Zachariae R, Farver-Vestergaard I, O'Connor M. Prevalence of prolonged grief disorder in adult bereavement: A systematic review and meta-analysis. J Affect Disord. 2017 Apr 1;212:138-149. doi: 10.1016/j.jad.2017.01.030. Epub 2017 Jan 23.
  9. Wimpenny P, Unwin R, Dempster P, Grundy MA, Work F, Brown A. Literature review on bereavement and bereavement care. Joanna Briggs Collaborating Centre for Evidence-based Multi-professional Practice. Aberdeen: Robert Gordon University; 2006.
  10. Akerman R, Statham J. Childhood bereavement: a rapid literature review. Loughborough (UK); Childhood Wellbeing Research Centre: 2011 Sep.
  11. Stroebe M. Schut H, Stroebe W. Health outcomes of bereavement. Lancet. 2007 Dec 8;370(9603):1960-73.
  12. Michael C, Cooper M. Post-traumatic growth following bereavement: A systematic review of the literature. Counsell Psychol Rev. 2013 Dec;28(4):18-33. (No abstract available)
  13. Waugh A, Kiemle G, Slade P. What aspects of post-traumatic growth are experienced by bereaved parents? A systematic review. Eur J Psychotraumatol. 2018 Aug 16;9(1):1506230. doi: 10.1080/20008198.2018.1506230. eCollection 2018.
  14. Holm AL, Severinsson E. Systematic review of the emotional state and self-management of widows. Nurs Health Sci. 2012 Mar;14(1):109-20. Epub 2012 Jan 30. 
  15. Stahl ST, Schulz R. Changes in routine health behaviors following late-life bereavement: a systematic review. J Behav Med. 2014;37(4):736-55. Epub 2013 Jul 24.
  16. Moon JR, Kondo N, Glymour MM, Subramanian SV. Widowhood and mortality: a meta-analysis. PLoS One. 2011;6(8):e23465. Epub 2011 Aug 17.
  17. Gauthier LR, Gagliese L. Bereavement interventions, end-of-life cancer care, and spousal well-being: A systematic review. Clin Psychol Sci Pract. 2012 Mar;19(1):72-92.
  18. Buckley T, McKinley S, Tofler G, Bartrop R. Cardiovascular risk in early bereavement: a literature review and proposed mechanisms. Int J Nurs Stud. 2010 Feb;47(2):229-38. Epub 2009 Aug 8.
  19. Aalbaek FS, Graff S, Vestergaard M. Risk of stroke after bereavement-a systematic literature review. Acta Neurol Scand. 2017 Oct;136(4):293-297. doi: 10.1111/ane.12736. Epub 2017 Feb 20.
  20. Currier JM, Neimeyer RA, Berman JS. Effectiveness of psychotherapeutic interventions for bereaved persons: a comprehensive qualitative review. Psychol Bull. 2008 Sep;134(5):648-61.
  21. Rosenberg AR, Baker KS, Syrjala K, Wolfe J. Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer. 2012 Apr;58(4):503-12.
  22. Ungureanu I, Sandberg JG. “Broken Together”: spirituality and religion as coping strategies for couples dealing with the death of a child: A literature review with clinical implications. Contemp Fam Ther. 2010 Sep;32(3):302-19. First online: 
  23. Aho AL, Astedt-Kurki P, Tarkka MT, Kaunonen M. Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research. J Clin Nurs. 2011 Feb;20(3-4):408-19. Epub 2010 Oct 14.
  24. Currier JM, Holland JM, Neimeyer RA. The Effectiveness of Bereavement Interventions with children: a meta-analytic review of controlled outcome research. J Clin Child Adolesc Psychol. 2007 Apr-Jun;36(2):253-9.
  25. Fernández-Ávalos MI, Fernández-Alcántara M, Cruz-Quintana F, Pérez-Marfil MN. Assessment of the grieving processes in people with intellectual disabilities: a systematic review / Evaluación de los procesos de duelo en personas con discapacidad intelectual: revisión sistemática. Estudios de Psicología. 2017;38(3):553-560.
  26. Fasse L, Sultan S, Flahault C, Mackinnon CJ, Dolbeault S, Bredart A. How do researchers conceive of spousal grief after cancer? A systematic review of models used by researchers to study spousal grief in the cancer context. Psychooncology. 2014 Feb;23(2):131-42. Epub 2013 Sep 30.
  27. Fenstermacher K, Hupcey JE. Perinatal bereavement: a principle-based concept analysis. J Adv Nurs. 2013 Nov;69(11):2389-400. Epub 2013 Mar 4.
  28. Logan EL, Thornton JA, Breen LJ. What determines supportive behaviors following bereavement? A systematic review and call to action. Death Stud. 2018 Feb;42(2):104-114. doi: 10.1080/07481187.2017.1329760. Epub 2017 Jun 8.
  29. Bergman AS, Axberg U, Hanson E. When a parent dies - a systematic review of the effects of support programs for parentally bereaved children and their caregivers. BMC Palliat Care. 2017 Aug 10;16(1):39. doi: 10.1186/s12904-017-0223-y.
  30. Holtslander L, Baxter S, Mills K, Bocking S, Dadgostari T, Duggleby W. Honoring the voices of bereaved caregivers: a Metasummary of qualitative research. BMC Palliat Care. 2017 Sep 6;16(1):48. doi: 10.1186/s12904-017-0231-y.
  31. Paul S. Is Death Taboo for Children? Developing Death Ambivalence as a Theoretical Framework to Understand Children’s Relationship with Death, Dying and Bereavement. Child Soc. 2019 Nov;33(6):556-571. doi: 10.1111/chso.12352. Epub 2019 Jul 17.
  32. Arruda-Colli MNF, Weaver MS, Wiener L. Communication About Dying, Death, and Bereavement: A Systematic Review of Children's Literature. J Palliat Med. 2017 May;20(5):548-559. doi: 10.1089/jpm.2016.0494. Epub 2017 Mar 27.
  33. Haylett WJ, Tilley DS. The Phenomenon of Bereaved Parenting: An Integrative Review of Literature. Omega (Westport). 2018 Dec 18:30222818819350. doi: 10.1177/0030222818819350. [Epub ahead of print]
  34. Dutta O, Tan-Ho G, Choo PY, Ho AHY. Lived experience of a child's chronic illness and death: A qualitative systematic review of the parental bereavement trajectory. Death Stud. 2019;43(9):547-561. doi: 10.1080/07481187.2018.1503621. Epub 2018 Oct 4.
  35. Chen CY, Panebianco A. Interventions for Young Bereaved Children: A Systematic Review and Implications for School Mental Health Providers. Child Youth Care Forum. 2018 Apr;47(2):151-171.
  36. Stiffler D, Birch N, Campbell H, Cullen D. A Synthesis of Coping Experiences After Infant Death. Holist Nurs Pract. 2017 Mar/Apr;31(2):118-125. doi: 10.1097/HNP.0000000000000199.
  37. Denny E. Metasummary is a useful way of synthesising quantitative and qualitative data. BJOG. 2019 Jan;126(1):22. doi: 10.1111/1471-0528.15461. Epub 2018 Oct 24.
  38. Meller N, Parker D, Hatcher D, Sheehan, A. Grief experiences of nurses after the death of an adult patient in an acute hospital setting: An integrative review of literature. Collegian. 2018. doi: 10.1016/j.colegn.2018.07.011.
  39. Raymond A, Lee SF, Bloomer MJ. Understanding the bereavement care roles of nurses within acute care: a systematic review. J Clin Nurs. 2017 Jul;26(13-14):1787-1800. doi: 10.1111/jocn.13503. Epub 2017 Mar 27.
  40. Shear MK, Simon N, Wall M, Zisook S, Neimeyer R, Duan N, et al. Complicated grief and related bereavement issues for DSM-5. Depress Anxiety. 2011 Feb;28(2):103-17.
  41. Agnew A, Manktelow R, Taylor B, Jones L. Bereavement needs assessment in specialist palliative care: a review of the literature. Palliat Med. 2010 Jan;24(1):46-59. Epub 2009 Sep17.
  42. Shields C, Kavanagh M, Russo K. A Qualitative Systematic Review of the Bereavement Process Following Suicide. Omega (Westport). 2017 Mar;74(4):426-454. doi: 10.1177/0030222815612281. Epub 2016 Aug 3.

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Last updated 08 November 2019