Skip to main content Accessibility help

What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients

  • Kelli I. Stajduhar (a1), Wanda Martin (a1) and Moira Cairns (a1)



Family members who take on the role of caregiving for someone who is dying begin bereavement after being emotionally and physically taxed by the caregiving experience. The course of bereavement is influenced by a number of factors, including health problems, financial concerns, social support, and family relationships. This paper reports on findings from a secondary analysis of qualitative data from a study examining family caregiver coping in end-of-life cancer care, to describe, from the perspectives of bereaved family caregivers, their perspectives on what made their grief difficult.


Qualitative data from three focus groups with family caregivers (n = 19) and two focus groups with health professionals (n = 14) were subjected to interpretive thematic analysis.


Our finding suggest three broad areas that make family caregivers' grief difficult: (1) dealing with occurrences in everyday life; (2) dealing with challenges specific to the caregiving situation; and (3) dealing with the healthcare system.

Significance of results:

The findings provide an important beginning point in understanding the types of issues that seem to make grief difficult for family caregivers of cancer patients at the end of life and can help professional groups to understand what is needed by family caregivers in terms of support and delivery of services.


Corresponding author

Address correspondence and reprint requests to: Kelli Stajduhar, School of Nursing and Centre on Aging, University of Victoria, Sedgewick Building, Room A104, 3800 Finnerty Road, Victoria, British Columbia, V8P 5C2, Canada. E-mail:


Hide All
Addington-Hall, J. & Karlsen, S. (2000). Do home deaths increase distress in bereavement? Palliative Medicine, 14, 161162.
Bodnar, J.C. & Kiecolt-Glaser, J.K. (1994). Caregiver depression after bereavement: Chronic stress isn't over when it's over. Psychology and Aging, 9, 372380.
Bonanno, G.A., Moskowitz, J.T., Papa, A., et al. (2005). Resilience to loss in bereaved spouses, bereaved parents, and bereaved gay men. Journal of Personality and Social Psychology, 88, 827843.
Bonnano, G.A., Wortman, C.B., Lehman, D.R., et al. (2002). Resilience to loss and chronic grief: A prospective study from preloss to 18 months postloss. Journal of Personality and Social Psychology, 83, 11501164.
Brazil, K., Bedard, M. & Willison, K. (2003). Bereavement adjustment and support among caregivers. Journal of Mental Health and Aging, 9, 193204.
Cairns, M., Thompson, M. & Wainwright, W. (2003). Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care. Winnipeg: Health Professions Press.
Chentsova-Dutton, Y. & Zisook, S. (2005). Adaptation to bereavement. Death Studies, 29, 877903.
Chentsova-Dutton, Y., Shucter, S., Hutchin, S., et al. (2002). Depression and grief reactions in hospice caregivers: From pre-death to 1 year afterwards. Journal of Affective Disorders, 69, 5360.
Chochinov, H.M., Holland, J.C. & Katz, L.Y. (1998). Bereavement: A special issue in oncology. In Psycho-oncology, Holland, J.C. (ed.), pp. 10161032. New York: Oxford University Press.
Dumont, S., Turgeon, J., Allard, P., et al. (2006). Caring for a loved one with advanced cancer: Determinants of psychological distress in family caregivers. Journal of Palliative Medicine, 9, 912921.
Ellifritt, J., Nelson, K.A. & Walsh, D. (2003). Complicated bereavement: A national survey of potential risk factors. American Journal of Hospice and Palliative Care, 20, 114120.
Ellison, N.M. & Ptacek, J.T. (2002). Physician interactions with families and caregivers after a patient's death: Current practices and proposed changes. Journal of Palliative Medicine, 5, 4955.
Ferrario, S.R., Cardillo, V., Vicario, F., et al. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18, 129136.
Goodridge, D., Bond, J.B., Camerson, C., et al. (2005). End-of-life care in a nursing home: A study of family, nurse and healthcare aide perspectives. International Journal of Palliative Nursing, 11, 226232.
Grbich, C.F., Parker, D. & Maddocks, I. (2001). The emotions and coping strategies of caregivers of family members with terminal cancer. Journal of Palliative Care, 17, 3036.
Grinyer, A. (2006). Caring for a young adult with cancer: The impact on mothers' health. Health and Social Care in the Community, 14, 311318.
Haley, W.E., LaMonde, L.A., Han, B., et al. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine, 6, 215224.
Herbert, R.S., Prigerson, H.G., Schultz, R., et al. (2006). Preparing caregivers for the death of a loved one: A theoretical framework and suggestions for future research. Journal of Palliative Medicine, 9, 11641171.
Hodde, N.M., Engelberg, R.A., Treece, P.D., et al. (2004). Factors associated with nurse assessment of the quality of dying and death in the intensive care unit. Critical Care Medicine, 32, 16481653.
Jo, S., Brazil, K., Lohfeld, L., et al. (2007). Caregiving at end of life: Perspectives from Spousal caregivers and care recipients. Palliative and Supportive Care, 5, 1117.
Jutras, S. & Veilleux, F. (1991). Informal caregiving: Correlates of perceived burden. Canadian Journal on Aging, 10, 4055.
Kim, Y., Baker, F., Spillers, R.L., et al. (2006). Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology, 15, 795804.
Kissane, D.W. & McKenzie, D.P. (1997). Family coping and bereavement outcome. Palliative Medicine, 11, 191201.
Koop, P.M. & Strang, V.R. (2003). The bereavement experience following home-based family caregiving for persons with advanced cancer. Clinical Nursing Research, 12, 127144.
Koop, P.M. & Strang, V.R. (1997) Predictors of bereavement outcomes in families of patients with cancer: A literature review. Canadian Journal of Nursing Research, 29, 3350.
Kramer, B.J., Boelk, A.Z. & Auer, C. (2006). Family conflict at the end of life: Lessons learned in a model program for vulnerable older adults. Journal of Palliative Medicine, 9, 791801.
Lehman, D.R., Ellard, J.H. & Wortman, C.B. (1986). Social support for the bereaved: Recipients' and providers' perspectives on what is helpful. Journal of Consulting and Clinical Psychology, 54, 438446.
McLaughlin, D., Sullivan, K. & Hasson, F. (2007). Hospice at home service: The carer's perspective. Support Care Cancer, 15, 163170.
Moen, P., Robison, J. & Dempster-McClain, D. (1995). Caregiving and women's well-being: A life course approach. Journal of Health and Social Behaviour, 36, 259273.
Ong, A.D., Bergeman, C.S. & Bisconti, T.L. (2004). The role of daily positive emotions during conjugal bereavement. Journal of Gerontology, 59B, 168176.
Osse, B.H.P., Vernooij-Dassen, M.J.F.J., Schade, E., et al. (2006). Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nursing, 29, 378388.
Park, C.L. & Folkman, S. (1997). Stability and change in psychosocial resources during caregiving and bereavement in partners of men with AIDS. Journal of Personality, 65, 421447.
Parkes, C.M. (1993). Bereavement. In Oxford Textbook of Palliative Medicine, Doyle, D., Hanks, G.C.W. & MacDonald, N. (eds.), pp. 663678. Oxford: Oxford University Press.
Penning, M.J. (1998). In the middle: Parental caregiving in the context of other roles. Journal of Gerontology, 53B, S188S197.
Pierson, C.M., Curtis, J.R. & Patrick, D.L. (2002). A good death: A qualitative study of patients with advanced AIDS. AIDS Care, 14, 587598.
Prigerson, H.G., Frank, E., Kasl, S.V., et al. (1995). Complicated grief and bereavement-related depression as distinct disorders: Preliminary empirical validation in elderly bereaved spouses. American Journal of Psychiatry, 152, 2230.
Rando, T. (1993). Treatment of Complicated Mourning. Champaign: Research Press.
Sawatzky, J.E. & Fowler-Kerry, S. (2003). Journal of Psychiatric and Mental Health Nursing, 10, 277286.
Scharlach, A.E. (1994). Caregiving and employment: Competing or complementary roles? The Gerontologist, 29, 382387.
Schulz, R., Newsom, J.T., Fleissner, K., et al. (1997). The effects of bereavement after family caregiving. Aging & Mental Health, 1, 269282.
Stajduhar, K.I. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 2735.
Stajduhar, K.I. & Davies, B. (2005). Variations in and factors influencing family members' decisions for palliative home care. Palliative Medicine, 19, 2132.
Stajduhar, K.I. (1997). Loss and bereavement: HIV/AIDS family caregiving experiences. Canadian Journal of Nursing Research, 29, 7386.
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association, 284, 24762482.
Stroebe, M.S., Hansson, R.O., Stroebe, W., et al. (2001). Introduction: Concepts and issues in contemporary research on bereavement. In Handbook of Bereavement Research: Consequences, Coping and Care, Stroebe, M.S., Hansson, R.O., Stroebe, W. et al. (eds.), pp. 322. Washington, DC: American Psychological Association.
Stroebe, M.S., Folkman, S., Hansson, R.O., et al. (2006). The prediction of bereavement outcome: Development of an integrative risk factor framework. Social Science & Medicine, 63, 24402451.
Teschendorf, B., Schwartz, C., Estwing Ferrans, C., et al. (2007). Caregiver role stress: When families become providers. Cancer Control, 14, 183189.
Ungar, L. & Florian, V. (2004). What helps middle-aged widows with their psychological and social adaptation several years after their loss? Death Studies, 28, 621642.
van Baarsen, B. (2002). Theories on coping with loss: The impact of social support and self-esteem on adjustment to emotional and social loneliness following a partner's death in later life. Journal of Gerontology, 57B, S33S42.
Vigano, A., Dorgan, M., Bruera, E., et al. (1999). The relative accuracy of the clinical estimation of the duration of life for patients with end of life cancer. Cancer, 86, 170176.
von Gunten, C.F., Ferris, F.D. & Emanuel, L.L. (2000). Ensuring competency in end-of-life care: Communication and relational skills. Journal of the American Medical Association, 284, 30513057.
Williams, A., Crooks, V., Stajduhar, K.I., et al. (2006). Canada's Compassionate Care Benefit: Views of family caregivers in chronic illness. International Journal of Palliative Nursing, 12, 438445.
Wyatt, G.K., Friedman, L., Given, C.W., et al. (1999). A profile of bereaved caregivers following provision of terminal care. Journal of Palliative Care, 15, 1325.
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? *



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