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

Published online by Cambridge University Press:  12 May 2005

ROY CAIN ,
MICHAEL MACLEAN  and
SCOTT SELLICK
ROY CAIN
Affiliation:
School of Social Work, McMaster University, Hamilton, Ontario, Canada
MICHAEL MACLEAN
Affiliation:
Faculty of Social Work, University of Regina, Regina, Saskatchewan, Canada
SCOTT SELLICK
Affiliation:
Northwestern Ontario Regional Cancer Centre, Thunder Bay, Ontario, Canada
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Abstract

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.

Keywords

CaregiversSupportPalliative care
Type
Research Article
Information
Palliative & Supportive Care , Volume 2 , Issue 3 , September 2004 , pp. 265 - 272
Copyright
© 2004 Cambridge University Press

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References

REFERENCES

Atkins, R. & Amenta, M.O. (1991). Family adaptation to AIDS: A comparative study. Hospice Journal, 7 (1–2), 71–83.Google Scholar
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, 189–194.Google Scholar
Boykin, A. & Winland-Brown, J. (1995). The dark side of caring: Challenges of caregiving. Journal of Gerontological Nursing, 21, 13–18.Google Scholar
Bramwell, L., MacKenzie, J., Laschinger, & H., et al. (1995). Need for overnight respite for primary caregivers of hospice clients. Cancer Nursing, 18, 337–343.Google Scholar
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, 45–65.Google Scholar
Ferris, S.H. & Mittelman, M.S. (1996). Behavioral treatment of Alzheimer's disease. International Psychogeriatrics, 8, 87–90.Google Scholar
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, 336–348.Google Scholar
Grunfeld, E., Glossop, R., McDowell, & I., et al. (1997). Caring for elderly people at home: The consequences to caregivers. Canadian Medical Association Journal, 157, 1101–1105.Google Scholar
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, 1621–1625.Google Scholar
Hull, M.M. (1990). Sources of stress for hospice caregiving families. The Hospice Journal, 6, 29–54.Google Scholar
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, 117–140.Google Scholar
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, 39–47.Google Scholar
Kramer, D. (1996). How women relate to terminally ill husbands and their subsequent adjustment to bereavement. Omega, 34, 93–106.Google Scholar
Lobb, D. (1995). Palliative care for women with AIDS. Journal of Palliative Care, 11, 45–50.Google Scholar
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, 138–147.Google Scholar
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, 792–802.Google Scholar
Moore, I. (1997). Living with Alzheimer's: Understanding the family's and patient's perspective. Geriatrics, 52, S33–S36.Google Scholar
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, 46–53.Google Scholar
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, 35–59.Google Scholar
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, 49–57.Google Scholar