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Applying feminist, multicultural, and social justice theory to diverse women who function as caregivers in end-of-life and palliative home care

Published online by Cambridge University Press:  26 November 2009

Christopher J. Mackinnon
Christopher J. Mackinnon*
Affiliation:
Department of Educational and Counselling Psychology, McGill University, Montreal, Québec, Canada; Palliative Care Research, S.M.B.D. Jewish General Hospital, Montreal, Quebéc, Canada; Palliative Care Unite, Montreal General Hospital, Montreal, Quebéc, Canada
*
Address correspondence and reprint requests to: Christopher J. MacKinnon, Department of Educational and Counselling Psychology, Faculty of Education, McGill University, 3700 McTavish Street, Montreal, Québec, H3A 1Y2, Canada. E-mail: [email protected]
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Abstract

Objective:

Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives.

Methods:

Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship.

Results:

The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex.

Significance of results:

The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

Keywords

WomenCaregivingFeminismMulticulturalismPalliative home care
Type
Review Article
Information
Palliative & Supportive Care , Volume 7 , Issue 4 , December 2009 , pp. 501 - 512
Copyright
Copyright © Cambridge University Press 2009

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References

REFERENCES

Ahmed, N., Bestall, J.C., Ahmedzai, S.H., et al. (2004). Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health social care professionals. Palliative Medicine, 18, 525–542.CrossRefGoogle ScholarPubMed
Allen, S.M., Goldscheider, F. & Ciambrone, D.A. (1999). Gender roles, marital intimacy, and nomination of spouse as primary caregiver. The Gerontologist, 39, 150.CrossRefGoogle ScholarPubMed
Arber, S. & Ginn, J. (1995). Gender differences in informal caring. Health and Social Care in the Community, 3, 19–31.CrossRefGoogle Scholar
Axelsson, B. & Sjödén, P. (1998). Quality of life of cancer patients and their spouses in palliative home care. Palliative Medicine, 12, 29–39.CrossRefGoogle ScholarPubMed
Baines, C, Evans, P. & Neysmith, S. (eds.). (1991). Women's Caring: Feminist Perspectives on Social Welfare. Toronto: McClelland and Stewart.Google Scholar
Bunting, S.M. (1992). Eve's legacy: An analysis of family caregiving from a feminist perspective. In Critique, Resistance, and Action: Working Papers in the Politics of Nursing, Allen, D.G., Thompson, J.L., & Rodrigues-Fisher, L. (eds.), pp. 53–68. New York: National League for Nursing.Google Scholar
Brown, L.S. (2000). Feminist therapy. In Handbook of Psychological Change: Psychotherapy Process and Practice for the 21st Century, Snyder, C.R. & Ingram, R.E., (eds.), pp. 358–380. New York: Wiley.Google Scholar
Brown, L.S. (2006). Still subversive after all these years: The relevance of feminist therapy in the age of evidence-based practice. Psychology of Women Quarterly, 30, 15–24.CrossRefGoogle Scholar
Calasanti, T. & King, N. (2007). Taking ‘women's work’ ‘like a man’: Husband's experiences of care work. The Gerontologist, 47, 516–527.CrossRefGoogle Scholar
Carlsson, M.E. & Rollison, B. (2003). A comparison of patients dying at home and patients dying at a hospice: Sociodemographic factors and caregivers' experiences. Palliative & Supportive Care, 1, 33–39.CrossRefGoogle Scholar
Catalán-Fernández, J.G., Pons-Sureda, O., Recober-Martínez, A., et al. (1991). Dying of cancer. The place of death and family circumstances. Medical Care, 29, 841–852.Google ScholarPubMed
Cohen, S.R., Leis, A.M., Kuhl, D., et al. (2006). QOLLTI-F: Measuring family carer quality of life. Palliative Medicine, 20, 755–767.CrossRefGoogle ScholarPubMed
Costantini, M., Camoirano, E., Madeddu, L., et al. (1993). Palliative home care and place of death among cancer patients: A population-based study. Palliative Medicine, 7, 323–331.CrossRefGoogle ScholarPubMed
Duffy, S.A., Jackson, F.C., Schim, S.M., et al. (2006). Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Journal of the American Geriatrics Society, 54, 150–157.CrossRefGoogle ScholarPubMed
Elioff, C. (2003). Accepting hospice care: Issues for the African American community. Smith College Studies in Social Work, 73, 377–384.CrossRefGoogle Scholar
Emanuel, E.J., Fairclough, D.L., Slutsman, J., et al. (2000). Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Annals of Internal Medicine, 132, 451–459.CrossRefGoogle ScholarPubMed
Enns, C.Z. (2004). Feminist Theories and Feminist Psychotherapies: Origins, Themes and Diversity (2nd ed.). New York: The Haworth Press.Google Scholar
Enns, C.Z. & Forrest, L.M. (2005). Toward defining and integrating multicultural and feminist pedagogies. In Teaching and Social Justice: Integrating Multicultural and Feminist Theories in the Classroom, Enns, C.Z. & Sinacore, A.L., (eds.), pp. 3–23. Washington, DC: American Psychological Association Press.Google Scholar
Enns, C.Z. & Sinacore, A.L. (eds.). (2005). Teaching and Social Justice: Integrating Multicultural and Feminist Theories in the Classroom. Washington, DC: American Psychological Association Press.Google Scholar
Ferrario, S.R., Cardillo, V., Vicario, F., et al. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18, 129–136.CrossRefGoogle Scholar
Fleming, D.A., Sheppard, V.B., Mangan, P.A., et al. (2006). Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers. Journal of Pain and Symptom Management, 31, 407–420.CrossRefGoogle ScholarPubMed
Gibson, C.H. (1995). The process of empowerment in mothers of chronically ill children. Journal of Advanced Nursing, 21, 1201–1210.CrossRefGoogle ScholarPubMed
Gill, P., Kaur, J.S., Rummans, T., et al. (2003). The hospice patient's primary caregiver: What is their quality of life? Journal of Psychosomatic Research, 55, 445–451.CrossRefGoogle ScholarPubMed
Gilligan, C. (1993). In a Different Voice: Psychological Theory and Women's Development. Cambridge, MA: Harvard University Press.CrossRefGoogle Scholar
Gordon, S. (1996). Feminism and caring. In Caregiving: Readings in Knowledge, Practice, Ethics, and Politics, Gordon, S., Benner, P., & Noddings, N. (eds.), pp. 256–277. Philadelphia: University of Pennsylvania Press.Google Scholar
Grande, G.E., Addington-Hall, J.M. & Todd, C.J. (1998). Place of death and access to home care services: Are certain patient groups at a disadvantage? Social Science and Medicine, 47, 565–579.CrossRefGoogle ScholarPubMed
Grinyer, A. (2006). Caring for a young adult with cancer: The impact on mothers' health. Health and Social Care in the Community, 14, 311–318.CrossRefGoogle Scholar
Hagedoorn, M., Buunk, B.P., Kuijer, R.G., et al. (2000). Couples dealing with cancer: Gender differences regarding psychological distress and quality of life. Psycho-Oncology, 9, 232–242.3.0.CO;2-J>CrossRefGoogle ScholarPubMed
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, 215–224.CrossRefGoogle ScholarPubMed
Harding, R. & Higginson, I.J. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17, 63–74.CrossRefGoogle ScholarPubMed
Hauser, J.M., Chang, C.-H., Alpert, H., et al. (2006). Who's caring for whom? Differing perspectives between seriously ill patients and their family caregivers. American Journal of Hospice & Palliative Medicine, 23, 105–112.CrossRefGoogle ScholarPubMed
Higginson, I.J., Wade, A. & McCarthy, M. (1990). Palliative care: Views of patients and their families. British Medical Journal, 301, 277–281.CrossRefGoogle ScholarPubMed
Hudson, P. (2004). Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing, 10, 58–65.CrossRefGoogle ScholarPubMed
Ingersoll-Dayton, B., Starrels, M.E. & Dowler, D. (1996). Caregiving for parents and parents-in-law: Is gender important? The Gerontologist, 36, 483–491.CrossRefGoogle ScholarPubMed
Ivey, A.E., D'Andrea, M., Bradford-Ivey, M., et al. (2007). Theories of Counseling and Psychotherapy: A Multicultural Perspective (6th ed.). Toronto, ON: Allyn & Bacon.Google Scholar
Jo, S., Brazil, K., Lohfeld, L., et al. (2007). Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliative and Supportive Care, 5, 11–17.CrossRefGoogle ScholarPubMed
Karlsen, S. & Addington-Hall, J. (1998). How do cancer patients who die at home differ from those who die elsewhere? Palliative Medicine, 12, 279–286.CrossRefGoogle ScholarPubMed
Kaufman, M.S. (1994). Men, feminism, and men's contradictory experiences of power. In Theorizing Masculinities, Brod, H. & Kaufman, M. (eds.), pp. 142–164. Thousand Oaks, CA: Sage Publications.CrossRefGoogle Scholar
Kramer, B.J. & Thompson, E.H. (2002). Men as Caregivers: Theory, Research and Service Implications. New York: Springer.Google Scholar
Kwak, J. & Haley, W.E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist, 45, 634–641.CrossRefGoogle ScholarPubMed
Lerner, H. (2005). The Dance of Anger: A Woman's Guide to Changing the Patterns of Intimate Relationships. New York: Perennial Currents.Google Scholar
Major, B. & Konar, E. (1984). An investigation of sex differences in pay expectations and their possible causes. Academy of Management Journal, 27, 777–792.CrossRefGoogle Scholar
McGraw, L.A. & Walker, A.J. (2004). Negotiating care: Ties between aging mothers and their caregiving daughters. Journal of Gerontology, 59B, S324–S332.CrossRefGoogle Scholar
Moen, P., Robison, J. & Dempster-McClain, D. (1995). Caregiving and women's well-being: A life course approach. Journal of Health and Social Behavior, 36, 259–273.CrossRefGoogle ScholarPubMed
Mok, E., Chan, F., Chan, V., et al. (2002). Perception of empowerment by family caregivers of patients with a terminal illness in Hong Kong. International Journal of Palliative Nursing, 8, 137–145.CrossRefGoogle ScholarPubMed
Morof-Lubkin, I. & Larsen, P.D. (2002) Chronic Illness: Impact and Interventions. Mississauga, ON: Jones & Bartlett.Google Scholar
Mount, B.M., Scott, J. & Cohen, S.R. (1993). Canada: Status of cancer pain and palliative care. Journal of Pain and Symptom Management, 8, 395–398.CrossRefGoogle ScholarPubMed
Myers, J.E., Sweeney, T.J. & Witmer, J.M. (2000). Counseling for wellness: A holistic model for treatment planning. Journal of Counseling and Development, 78, 251–266.CrossRefGoogle Scholar
Payne, R., Payne, T.R. & Heller, K.S. (2002). The Harlem palliative care network. Journal of Palliative Medicine, 5, 781–792.CrossRefGoogle ScholarPubMed
Payne, S., Chapman, A., Holloway, M., et al. (2005). Chinese community views: Promoting cultural competence in palliative care. Journal of Palliative Care, 21, 111–116.CrossRefGoogle ScholarPubMed
Perry, J., Lynam, M.J. & Anderson, J.M. (2006). Resisting vulnerability: The experiences of families who have kin in hospital—A feminist ethnography. International Journal of Nursing Studies, 43, 173–184.CrossRefGoogle ScholarPubMed
Proot, I.M., Abu-Saad, H.H., Crebolder, H.F.J.M., et al. (2003). Vulnerability of family caregivers in terminal palliative home care: Balancing between burden and capacity. Scandinavian Journal of Caring Science, 17, 113–121.CrossRefGoogle ScholarPubMed
Rosenthal, C.J. (1985). Kinkeeping in the family division of labor. Journal of Marriage and Family Therapy, 47, 965–974.CrossRefGoogle Scholar
Rosenwax, L.K. & McNamara, B.A. (2006). Who receives specialist palliative care in western Australia—and who misses out. Palliative Medicine, 20, 439–445.CrossRefGoogle ScholarPubMed
Scharlach, A.E. (1994). Caregiving and employment: Competing or complementary roles? The Gerontologist, 29, 382–387.CrossRefGoogle Scholar
Schim, S.M., Doorenbos, A.Z. & Borse, N.N. (2006). Enhancing cultural competence among hospice staff. The American Journal of Hospice and Palliative Care, 23, 404–411.CrossRefGoogle ScholarPubMed
Schwartz, F.E. (1993). The older woman as caregiver: A feminist perspective. Perspectives, 17, 6–10.Google ScholarPubMed
Shawler, C. (2007). Empowerment of aging mothers and daughters in transition during a health crisis. Qualitative Health Research, 17, 838–849.CrossRefGoogle ScholarPubMed
Sinacore, A.L. & Boatwright, K.J. (2005). The feminist classroom: Feminist strategies and student responses. In Teaching and Social Justice: Integrating Multicultural and Feminist Theories in the Classroom, Enns, C.Z. & Sinacore, A.L. (eds.), pp. 109–124. Washington, DC: American Psychological Association Press.Google Scholar
Stajduhar, K.I. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 27–35.CrossRefGoogle ScholarPubMed
Stajduhar, K.I. & Cohen, S.R. (2009). Family carers in the home. In Family Carers in Palliative Care: A Guide for Health and Social Care Professionals, Hudson, P. & Payne, S. (eds.), pp. 149–168. London, England: Oxford University Press.Google Scholar
Stajduhar, K.I. & Davies, B. (1998). Death at home: Challenges for families and directions for the future. Journal of Palliative Care, 14, 8–14.CrossRefGoogle ScholarPubMed
Stajduhar, K.I. & Davies, B. (2005). Variations in and factors influencing family members' decisions for palliative home care. Palliative Medicine, 19, 21–32.CrossRefGoogle ScholarPubMed
Stoltz, P., Lindholm, M., Udén, G., et al. (2006). The meaning of being supportive for family caregivers as narrated by registered nurses working in palliative homecare. Nursing Science Quarterly, 19, 163–173.CrossRefGoogle ScholarPubMed
Sue, D.W. & Sue, D. (2008). Counseling the Culturally Diverse: Theory and practice (5th ed.). Hoboken, NJ: John Wiley & Sons.Google Scholar
Szapocznik, J., Scopetta, M.A., Ceballos, A., et al. (1994). Understanding supporting and empowering families: From microanalysis to macrointerventions [Special Section]. Family Psychologist, 10, 23–27.Google Scholar
Taylor, J.S. (2003). Confronting “culture” in medicine's “culture of no culture.” Academic Medicine, 78, 555–559.CrossRefGoogle Scholar
Thompson, E. (2002). What's unique about men's caregiving? In Men as Caregivers: Theory, Research and Service Implications, Kramer, B. & Thompson, E. (eds.), pp. 20–47. New York: Springer.Google Scholar
Turner, L. (2005). Is cultural sensitivity sometimes insensitive? Canadian Family Physician, 51, 478–480.Google ScholarPubMed
Visser, G., Klinkenberg, M., van Groenou, M.I.B., et al. (2004). The end of life: Informal care for dying older people and its relationship to place of death. Palliative Medicine, 18, 468–477.CrossRefGoogle ScholarPubMed
Ward-Griffin, C., Oudshoorn, A., Clark, K., et al. (2007). Mother-adult daughter relationships within dementia care. Journal of Family Nursing, 13, 13–32.CrossRefGoogle ScholarPubMed
West, C. & Zimmerman, D. (1987). Doing gender. Gender & Society, 1, 125–151.CrossRefGoogle Scholar
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, 438–45.CrossRefGoogle ScholarPubMed
Wuest, J. (2001). Precarious ordering: Toward a formal theory of women's caring. Health Care for Women International, 22, 167–193.CrossRefGoogle Scholar
Yalom, I.D. (2008). Staring at the Sun: Overcoming the Terror of Death. San Francisco, CA: Jossey-Bass.Google Scholar