Hostname: page-component-848d4c4894-p2v8j Total loading time: 0.001 Render date: 2024-06-03T05:49:44.224Z Has data issue: false hasContentIssue false
  • English
  • Français

The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers

Published online by Cambridge University Press:  21 June 2017

Emma Kirby ,
Katherine Kenny ,
Alex Broom ,
John MacArtney  and
Phillip Good
Emma Kirby
Affiliation:
School of Social Sciences, University of New South Wales, Sydney, New South Wales, Australia
Katherine Kenny*
Affiliation:
School of Social Sciences, University of New South Wales, Sydney, New South Wales, Australia
Alex Broom
Affiliation:
School of Social Sciences, University of New South Wales, Sydney, New South Wales, Australia
John MacArtney
Affiliation:
Health Experiences Research Group, Oxford University, Oxford, United Kingdom
Phillip Good
Affiliation:
Director of Palliative Care, St Vincent's Private Hospital, and Mater Research Institute, University of Queensland, Brisbane, Queensland, Australia
*
Address correspondence and reprint requests to: Katherine Kenny, Practice Justice Initiative, Level 3, Goodsell Building–F20, University of New South Wales, Sydney, New South Wales 2052, Australia. E-mail: katherine.kenny@unsw.edu.au.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some—though not all—caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support.

Method:

This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3–9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed.

Results:

The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the “personal” character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support.

Significance of results:

Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.

Keywords

BereavementSupportFamily caregiversQualitativePalliative
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Special Issue 4: Topics in Bereavement , August 2018 , pp. 396 - 405
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Abbott, J., O'Connor, M. & Payne, S. (2008). An Australian survey of palliative care and hospice bereavement services. Australian Journal of Cancer Nursing, 9(2), 12–17.Google Scholar
Agnew, A., Manktelow, R., Taylor, B., et al. (2010). Bereavement needs assessment in specialist palliative care: A review of the literature. Palliative Medicine, 24(1), 46–59.Google Scholar
Agnew, A., Manktelow, R., Haynes, T., et al. (2011). Bereavement assessment practice in hospice settings: Challenges for palliative care social workers. British Journal of Social Work, 41(1), 111–130.Google Scholar
Aoun, S.M., Kristjanson, L.J., Currow, D.C., et al. (2005). Caregiving for the terminally ill: At what cost? Palliative Medicine, 19(7), 551–555.Google Scholar
Aoun, S.M., Breen, L.J., Howting, D.A., et al. (2015). Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One, 10(3), e0121101.Google Scholar
Bandini, J. (2015). The medicalization of bereavement: (Ab)normal grief in the DSM–5. Death Studies, 39(6), 347–352.Google Scholar
Bowling, A. (1994). Mortality after bereavement: An analysis of mortality rates and associations with mortality 13 years after bereavement. International Journal of Geriatric Psychiatry, 9(6), 445–459.Google Scholar
Breen, L.J. (2012). The effect of caring on post-bereavement outcome: Research gaps and practice priorities. Progress in Palliative Care, 20(1), 27–30.Google Scholar
Breen, L.J., Aoun, S.M., O'Connor, M., et al. (2014). Bridging the gaps in palliative care bereavement support: An international perspective. Death Studies, 38(1–5), 54–61.Google Scholar
Breen, L.J., Aoun, S.M., Rumbold, B., et al. (2017). Building community capacity in bereavement support: Lessons learnt from bereaved caregivers. The American Journal of Hospice and Palliative Medicine, 34(3), 275–281.Google Scholar
Broom, A. & Kirby, E. (2013). The end of life and the family: Hospice patients' views on dying as relational. Sociology of Health & Illness, 35(4), 499–513.Google Scholar
Broom, A., Kirby, E., Kenny, K., et al. (2016). Moral ambivalence and informal care for the dying. The Sociological Review, 64(4), 987–1004.Google Scholar
Buckley, T., Sunari, D., Marshall, A., et al. (2012). Physiological correlates of bereavement and the impact of bereavement interventions. Dialogues in Clinical Neuroscience, 14(2), 129–139.Google Scholar
Cherlin, E.J., Barry, C.L., Prigerson, H.G., et al. (2007). Bereavement services for family caregivers: How often used, why, and why not. Journal of Palliative Medicine, 10(1), 148–158.Google Scholar
Colombo, F., Llena-Nozal, A., Mercier, J., et al. (2011). Help Wanted? Providing and Paying for Long-Term Care. Paris: OECD Publishing.Google Scholar
Currier, J.M., Neimeyer, R.A. & Berman, J.S. (2008). The effectiveness of psychotherapeutic interventions for bereaved persons: A comprehensive quantitative review. Psychological Bulletin, 134(5), 648–661.Google Scholar
Diamond, H., Llewelyn, S., Relf, M., et al. (2012). Helpful aspects of bereavement support for adults following an expected death: Volunteers' and bereaved people's perspectives. Death studies, 36(6), 541–564.Google Scholar
Ezzy, D. (2002). Qualitative Analysis: Practice and Innovation. London: Routledge.Google Scholar
Field, D., Payne, S., Relf, M., et al. (2007). Some issues in the provision of adult bereavement support by UK hospices. Social Science & Medicine, 64(2), 428–438.Google Scholar
Fitzpatrick, R. & Boulton, M. (1996). Qualitative research in health care, I: The scope and validity of methods. Journal of Evaluation in Clinical Practice, 2(2), 123–130.Google Scholar
Forte, A.L., Hill, M., Pazder, R., et al. (2004). Bereavement care interventions: A systematic review. BMC Palliative Care, 3(1), 3.Google Scholar
Friedman, R.A. (2012). Grief, depression, and the DSM–5. The New England Journal of Medicine, 366(20), 1855–1857.Google Scholar
Girgis, A., Johnson, C., Currow, D., et al. (2006). Palliative Care Needs Assessment Guidelines. Newcastle, Australia: The Centre for Health Research & Psycho-Oncology.Google Scholar
Grande, G.E., Farquhar, M.C., Barclay, S.I., et al. (2004). Caregiver bereavement outcome: Relationship with hospice at home, satisfaction with care, and home death. Journal of Palliative Care, 20(2), 69–77.Google Scholar
Grov, E.K., Dahl, A.A., Moum, T., et al. (2005). Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Annals of Oncology, 16(7), 1185–1191.Google Scholar
Hall, C., Hudson, P. & Boughey, A. (2012). Bereavement Support Standards for Specialist Palliative Care Services. Melbourne: Department of Health, State Government of Victoria. Available from http://dr892t1ezw8d7.cloudfront.net/wp-content/uploads/2015/12/Bereavement-support-standards-for-specialist-palliative-care.pdf.Google Scholar
Hardison, H.G., Neimeyer, R.A. & Lichstein, K.L. (2005). Insomnia and complicated grief symptoms in bereaved college students. Behavioral Sleep Medicine, 3(2), 99–111.Google Scholar
Hart, C.L., Hole, D.J., Lawlor, D.A., et al. (2007). Effect of conjugal bereavement on mortality of the bereaved spouse in participants of the Renfrew/Paisley study. Journal of Epidemiology and Community Health, 61(5), 455–460.Google Scholar
Holmes, T.H. & Rahe, R.H. (1967). The social readjustment rating scale. Journal of Psychosomatic Research, 11(2), 213–218.Google Scholar
Hudson, P.L. (2006). How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support? Journal of Palliative Medicine, 9(3), 694–703.Google Scholar
Hudson, P.L. (2013). Improving support for family carers: Key implications for research, policy and practice. Palliative Medicine, 27(7), 581–582.Google Scholar
Hudson, P.L. & Payne, S. (2009). The future of family caregiving: Research, social policy and clinical practice. In Family Carers in Palliative Care: A Guide for Health and Social Care Professionals, Hudson, P. & Payne, S. (eds.), pp. 277–303. Oxford: Oxford University Press.Google Scholar
Hudson, P., Remedios, C., Zordan, R., et al. (2010 a). Clinical Practice Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients. Centre for Palliative Care, St Vincent's Hospital Melbourne: Melbourne, Australia.Google Scholar
Hudson, P.L., Trauer, T., Graham, S., et al. (2010 b). A systematic review of instruments related to family caregivers of palliative care patients. Palliative Medicine, 24(7), 656–668.Google Scholar
Hudson, P.L., Thomas, K., Trauer, T., et al. (2011). Psychological and social profile of family caregivers on commencement of palliative care. Journal of Pain and Symptom Management, 41(3), 522–534.Google Scholar
Hudson, P., Remedios, C., Zordan, R., et al. (2012). Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. Journal of Palliative Medicine, 15(6), 696–702.Google Scholar
Jordan, J.R. & Neimeyer, R.A. (2003). Does grief counseling work? Death Studies, 27(9), 765–786.Google Scholar
Kerslake, D., Chaplin, D., Hartley, J., et al. (2014). New bereavement care service standards. Bereavement Care, 33(1), 28–32.Google Scholar
Lichtenthal, W.G., Nilsson, M., Kissane, D.W., et al. (2011). Underutilization of mental health services among bereaved caregivers with prolonged grief disorder. Psychiatric Services, 62(10), 1225–1229.Google Scholar
Lobb, E.A., Kristjanson, L.J., Aoun, S.M., et al. (2010). Predictors of complicated grief: A systematic review of empirical studies. Death Studies, 34(8), 673–698.Google Scholar
MacArtney, J.I., Broom, A., Kirby, E., et al. (2015 a). On resilience and acceptance in the transition to palliative care at the end of life. Health, 19(3), 263–279.Google Scholar
MacArtney, J.I., Broom, A., Kirby, E., et al. (2015 b). The liminal and the parallax: Living and dying at the end of life. Qualitative Health Research, 27(5), 623–633.Google Scholar
MacArtney, J.I., Broom, A., Kirby, E., et al. (2016). Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying. Sociology of Health and Illness, 38(3), 479–492.Google Scholar
Mather, M.A., Good, P.D., Cavenagh, J.D., et al. (2008). Survey of bereavement support provided by Australian palliative care services. The Medical Journal of Australia, 188(4), 228–230.Google Scholar
Milberg, A., Olsson, E.C., Jakobsson, M., et al. (2008). Family members' perceived needs for bereavement follow-up. Journal of Pain and Symptom Management, 35(1), 58–69.Google Scholar
Payne, S. (2001). Bereavement support: Something for everyone? International Journal of Palliative Nursing, 7(3), 108.Google Scholar
Payne, S. & Field, D. (2004). Undertaking bereavement research: Sensitivities and sensibilities. Grief Matters, 7(3), 52–56.Google Scholar
Pope, C., Ziebland, S., Mays, N. (2006). Analysing qualitative data. In Qualitative Research in Health Care, 3rd ed. Pope, C. & Mays, N. (eds.), pp. 63–81. Oxford: Blackwell Publishing.Google Scholar
Prigerson, H.G., Maciejewski, P.K., Reynolds, C.F. 3rd, et al. (1995). Inventory of complicated grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research, 59(1–2), 65–79.Google Scholar
Rebollo, P., Alonso, J., Ramon, I., et al. (2005). Health-related quality of life during the bereavement period of caregivers of a deceased elderly person. Quality of Life Research, 14(2), 501–509.Google Scholar
Roulston, A., Campbell, A., Cairnduff, V., et al. (2016). Bereavement outcomes: A quantitative survey identifying risk factors in informal carers bereaved through cancer. Palliative Medicine, 31(2), 1–9.Google Scholar
Sealey, M., Breen, L.J., O'Connor, M., et al. (2015). A scoping review of bereavement risk assessment measures: Implications for palliative care. Palliative Medicine, 29(7), 577–589.Google Scholar
Steinhauser, K.E. & Barroso, J. (2009). Using qualitative methods to explore key questions in palliative care. Journal of Palliative Medicine, 12(8), 725–730.Google Scholar
Steinhauser, K.E., Clipp, E.C., McNeilly, M., et al. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10), 825–832.Google Scholar
Stoltz, P., Uden, G. & Willman, A. (2004). Support for family carers who care for an elderly person at home: A systematic literature review. Scandinavian Journal of Caring Sciences, 18(2), 111–119.Google Scholar
Stroebe, M.S. & Stroebe, W. (1990). Who participates in bereavement research? A review and empirical study. Omega, 20(1), 1–29.Google Scholar
Stroebe, M.S. & Stroebe, W. (1993). The mortality of bereavement: A review. In Handbook of Bereavement: Theory, Research, and Intervention. Stroebe, M.S. et al. (eds.), pp. 175–195. New York: Cambridge University Press.Google Scholar
Stroebe, M.S., Schut, H. & Stroebe, W. (2007). Health outcomes of bereavement. Lancet 370(9603), 1960–1973.Google Scholar
Tol, W.A., Barbui, C., Bisson, J., et al. (2014). World Health Organization guidelines for management of acute stress, PTSD, and bereavement: Key challenges on the road ahead. PLoS Medicine, 11(12), e1001769.Google Scholar
World Health Organization (2002). National Cancer Control Programmes: Policies and Managerial Guidelines, 2nd ed. Geneva: World Health Organization. Available from http://www.who.int/cancer/media/en/408.pdf.Google Scholar