Skip to main content Accessibility help

Giving support and getting help: Informal caregivers' experiences with palliative care services



Objective: Palliative care services have made significant contributions to those needing end-of-life care, but the effect of these services on informal caregivers is less clear. This article reviews the literature and examines the influences of palliative care services on caregivers of people who are dying of cancer, HIV-related illnesses, and illnesses of later life.

Methods: Based on questions that we developed from the literature review, we conducted six focus groups in Toronto, Thunder Bay, and Ottawa, Canada, with informal caregivers about their experiences with caregiving and with palliative care services.

Results: We outline the major themes relating to the 42 focus group participants' experiences of giving support and getting help.

Significance of results: Our findings help us better understand the common concerns of caregivers of terminally ill seniors, people with HIV/AIDS, and people with cancer. The article discusses the implications of participants' experiences for palliative care service providers.


Corresponding author

Corresponding author: Roy Cain, Ph.D., School of Social Work (KTH-221), McMaster University, Hamilton, ON, L8S 4M4, Canada. E-mail:


Hide All


Atkins, R. & Amenta, M.O. (1991). Family adaptation to AIDS: A comparative study. Hospice Journal, 7 (1–2), 7183.
Attias-Donfut, C. (Ed.). (1995). Les Solidarités Entre Générations: Vieillese, Familles, état. Paris: Nathan, coll. Essais et Recherche.
Baines, C., Evans, P., & Neysmith, S. (1991). Women's Caring: Feminist Perspectives on Social Welfare. Toronto: McClelland & Stewart, Inc.
Baltes, M.M. (1996). The Many Faces of Dependency in Old Age. New York: Cambridge University Press.
Blanchard, C.G., Albrecht, T.L., & Ruckdeschel, J.C. (1997). The crisis of cancer: Psychological impact on family caregivers. Oncology, 11, 189194.
Boykin, A. & Winland-Brown, J. (1995). The dark side of caring: Challenges of caregiving. Journal of Gerontological Nursing, 21, 1318.
Bramwell, L., MacKenzie, J., Laschinger, & H., et al. (1995). Need for overnight respite for primary caregivers of hospice clients. Cancer Nursing, 18, 337343.
Davis-Ali, S.H., Chesler, M.A., & Chesney, B.K. (1993). Recognizing cancer as a family disease: Worries and support reported by patients and spouses. Social Work in Health Care, 19, 4565.
Ferris, S.H. & Mittelman, M.S. (1996). Behavioral treatment of Alzheimer's disease. International Psychogeriatrics, 8, 8790.
Fisher, A., Vohr, F., & Wacker, M. (1994). Role of in-hospital palliative care service. In Kitamura, T. & Shiokawa, Y. (eds.). Global Challenge of AIDS: Proceedings from the 10th International Conference on AIDS. New York: Karger.
Folkman, S., Chesney, M., Collette, L., Boccellari, A., & Cooke, M. (1996). Postbereavement depressive mood and its prebereavement predictors in HIV+ and HIV− gay men. Personality & Social Psychology, 70, 336348.
Grunfeld, E., Glossop, R., McDowell, & I., et al. (1997). Caring for elderly people at home: The consequences to caregivers. Canadian Medical Association Journal, 157, 11011105.
Hicks, C. (1988). Who Cares? Looking after People at Home. London: Virago Press Ltd.
Higginson, I. & Priest, P. (1996). Predictors of family anxiety in the weeks before bereavement. Social Science & Medicine, 43, 16211625.
Hull, M.M. (1990). Sources of stress for hospice caregiving families. The Hospice Journal, 6, 2954.
Kirschling, J.M., Stewart, B.J., & Archbold, P.G. (1994). Family caregivers of post-hospitalized older persons and persons receiving hospice: Similarities and differences. Home Health Care Services Quarterly, 14, 117140.
Knapp, E.R. & DelCampo, R.L. (1995). Developing family care plans: A systems perspective for helping hospice families. American Journal of Hospice & Palliative Care, 12, 3947.
Kramer, D. (1996). How women relate to terminally ill husbands and their subsequent adjustment to bereavement. Omega, 34, 93106.
Lobb, D. (1995). Palliative care for women with AIDS. Journal of Palliative Care, 11, 4550.
Miaskowski, C., Kragness, L., Dibble, & S., et al. (1997). Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. Journal of Pain & Symptom Management, 13, 138147.
Mittelman, M.S., Ferris, S.H., Shulman, & E., et al. (1995). Comprehensive support program: Effect on depression in spouse-caregivers of AIDS patients. Gerontologist, 35, 792802.
Moore, I. (1997). Living with Alzheimer's: Understanding the family's and patient's perspective. Geriatrics, 52, S33S36.
Perreault, M., Reidy, M., Taggart, & M.E., et al. (1994). Needs assessment of natural caregivers of people with HIV or AIDS. In Kitamura, T. & Shiokawa, Y. (eds.). Global Challenge of AIDS: Proceedings from the 10th International Conference on AIDS. New York: Karger.
Smith, G. (1994). Palliative care in Toronto for people living with AIDS: The impact of class on poor PWAs. Journal of Palliative Care, 10, 4653.
Turner, H.A. & Catania, J.A. (1997). Informal caregiving to persons with AIDS in the United States: Caregiver burden among central cities residents eighteen to forty-nine years old. American Journal of Community Psychology, 25, 3559.
Walker, R.J., Pomeroy, E.C., McNeil, & J.S., et al. (1996). Anticipatory grief and AIDS: Strategies for intervening with caregivers. Health & Social Work, 21, 4957.


Giving support and getting help: Informal caregivers' experiences with palliative care services



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