Skip to main content Accessibility help

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

  • Emma Kirby (a1), Katherine Kenny (a1), Alex Broom (a1), John MacArtney (a2) and Phillip Good (a3)...



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.


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.


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.


Corresponding author

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:


Hide All
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), 1217.
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), 4659.
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), 111130.
Aoun, S.M., Kristjanson, L.J., Currow, D.C., et al. (2005). Caregiving for the terminally ill: At what cost? Palliative Medicine, 19(7), 551555.
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.
Bandini, J. (2015). The medicalization of bereavement: (Ab)normal grief in the DSM–5. Death Studies, 39(6), 347352.
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), 445459.
Breen, L.J. (2012). The effect of caring on post-bereavement outcome: Research gaps and practice priorities. Progress in Palliative Care, 20(1), 2730.
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), 5461.
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), 275281.
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), 499513.
Broom, A., Kirby, E., Kenny, K., et al. (2016). Moral ambivalence and informal care for the dying. The Sociological Review, 64(4), 9871004.
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), 129139.
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), 148158.
Colombo, F., Llena-Nozal, A., Mercier, J., et al. (2011). Help Wanted? Providing and Paying for Long-Term Care. Paris: OECD Publishing.
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), 648661.
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), 541564.
Ezzy, D. (2002). Qualitative Analysis: Practice and Innovation. London: Routledge.
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), 428438.
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), 123130.
Forte, A.L., Hill, M., Pazder, R., et al. (2004). Bereavement care interventions: A systematic review. BMC Palliative Care, 3(1), 3.
Friedman, R.A. (2012). Grief, depression, and the DSM–5. The New England Journal of Medicine, 366(20), 18551857.
Girgis, A., Johnson, C., Currow, D., et al. (2006). Palliative Care Needs Assessment Guidelines. Newcastle, Australia: The Centre for Health Research & Psycho-Oncology.
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), 6977.
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), 11851191.
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
Hardison, H.G., Neimeyer, R.A. & Lichstein, K.L. (2005). Insomnia and complicated grief symptoms in bereaved college students. Behavioral Sleep Medicine, 3(2), 99111.
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), 455460.
Holmes, T.H. & Rahe, R.H. (1967). The social readjustment rating scale. Journal of Psychosomatic Research, 11(2), 213218.
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), 694703.
Hudson, P.L. (2013). Improving support for family carers: Key implications for research, policy and practice. Palliative Medicine, 27(7), 581582.
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. 277303. Oxford: Oxford University Press.
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.
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), 656668.
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), 522534.
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), 696702.
Jordan, J.R. & Neimeyer, R.A. (2003). Does grief counseling work? Death Studies, 27(9), 765786.
Kerslake, D., Chaplin, D., Hartley, J., et al. (2014). New bereavement care service standards. Bereavement Care, 33(1), 2832.
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), 12251229.
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), 673698.
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), 263279.
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), 623633.
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), 479492.
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), 228230.
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), 5869.
Payne, S. (2001). Bereavement support: Something for everyone? International Journal of Palliative Nursing, 7(3), 108.
Payne, S. & Field, D. (2004). Undertaking bereavement research: Sensitivities and sensibilities. Grief Matters, 7(3), 5256.
Pope, C., Ziebland, S., Mays, N. (2006). Analysing qualitative data. In Qualitative Research in Health Care, 3rd ed. Pope, C. & Mays, N. (eds.), pp. 6381. Oxford: Blackwell Publishing.
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), 6579.
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), 501509.
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), 19.
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), 577589.
Steinhauser, K.E. & Barroso, J. (2009). Using qualitative methods to explore key questions in palliative care. Journal of Palliative Medicine, 12(8), 725730.
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), 825832.
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), 111119.
Stroebe, M.S. & Stroebe, W. (1990). Who participates in bereavement research? A review and empirical study. Omega, 20(1), 129.
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. 175195. New York: Cambridge University Press.
Stroebe, M.S., Schut, H. & Stroebe, W. (2007). Health outcomes of bereavement. Lancet 370(9603), 19601973.
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.
World Health Organization (2002). National Cancer Control Programmes: Policies and Managerial Guidelines, 2nd ed. Geneva: World Health Organization. Available from
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
  • URL: /core/journals/palliative-and-supportive-care
Please enter your name
Please enter a valid email address
Who would you like to send this to? *



Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed