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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

  • Christopher J. Mackinnon (a1)

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.


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.


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.

Corresponding author
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:
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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, 525542.
Allen S.M., Goldscheider F. & Ciambrone D.A. (1999). Gender roles, marital intimacy, and nomination of spouse as primary caregiver. The Gerontologist, 39, 150.
Arber S. & Ginn J. (1995). Gender differences in informal caring. Health and Social Care in the Community, 3, 1931.
Axelsson B. & Sjödén P. (1998). Quality of life of cancer patients and their spouses in palliative home care. Palliative Medicine, 12, 2939.
Baines C, Evans P. & Neysmith S. (eds.). (1991). Women's Caring: Feminist Perspectives on Social Welfare. Toronto: McClelland and Stewart.
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. 5368. New York: National League for Nursing.
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. 358380. New York: Wiley.
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, 1524.
Calasanti T. & King N. (2007). Taking ‘women's work’ ‘like a man’: Husband's experiences of care work. The Gerontologist, 47, 516527.
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, 3339.
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, 841852.
Cohen S.R., Leis A.M., Kuhl D., et al. (2006). QOLLTI-F: Measuring family carer quality of life. Palliative Medicine, 20, 755767.
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, 323331.
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, 150157.
Elioff C. (2003). Accepting hospice care: Issues for the African American community. Smith College Studies in Social Work, 73, 377384.
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, 451459.
Enns C.Z. (2004). Feminist Theories and Feminist Psychotherapies: Origins, Themes and Diversity (2nd ed.). New York: The Haworth Press.
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. 323. Washington, DC: American Psychological Association Press.
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.
Ferrario S.R., Cardillo V., Vicario F., et al. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18, 129136.
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, 407420.
Gibson C.H. (1995). The process of empowerment in mothers of chronically ill children. Journal of Advanced Nursing, 21, 12011210.
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, 445451.
Gilligan C. (1993). In a Different Voice: Psychological Theory and Women's Development. Cambridge, MA: Harvard University Press.
Gordon S. (1996). Feminism and caring. In Caregiving: Readings in Knowledge, Practice, Ethics, and Politics, Gordon S., Benner P., & Noddings N. (eds.), pp. 256277. Philadelphia: University of Pennsylvania Press.
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, 565579.
Grinyer A. (2006). Caring for a young adult with cancer: The impact on mothers' health. Health and Social Care in the Community, 14, 311318.
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, 232242.
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.
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, 6374.
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, 105112.
Higginson I.J., Wade A. & McCarthy M. (1990). Palliative care: Views of patients and their families. British Medical Journal, 301, 277281.
Hudson P. (2004). Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing, 10, 5865.
Ingersoll-Dayton B., Starrels M.E. & Dowler D. (1996). Caregiving for parents and parents-in-law: Is gender important? The Gerontologist, 36, 483491.
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.
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, 1117.
Karlsen S. & Addington-Hall J. (1998). How do cancer patients who die at home differ from those who die elsewhere? Palliative Medicine, 12, 279286.
Kaufman M.S. (1994). Men, feminism, and men's contradictory experiences of power. In Theorizing Masculinities, Brod H. & Kaufman M. (eds.), pp. 142164. Thousand Oaks, CA: Sage Publications.
Kramer B.J. & Thompson E.H. (2002). Men as Caregivers: Theory, Research and Service Implications. New York: Springer.
Kwak J. & Haley W.E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist, 45, 634641.
Lerner H. (2005). The Dance of Anger: A Woman's Guide to Changing the Patterns of Intimate Relationships. New York: Perennial Currents.
Major B. & Konar E. (1984). An investigation of sex differences in pay expectations and their possible causes. Academy of Management Journal, 27, 777792.
McGraw L.A. & Walker A.J. (2004). Negotiating care: Ties between aging mothers and their caregiving daughters. Journal of Gerontology, 59B, S324S332.
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, 259273.
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, 137145.
Morof-Lubkin I. & Larsen P.D. (2002) Chronic Illness: Impact and Interventions. Mississauga, ON: Jones & Bartlett.
Mount B.M., Scott J. & Cohen S.R. (1993). Canada: Status of cancer pain and palliative care. Journal of Pain and Symptom Management, 8, 395398.
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, 251266.
Payne R., Payne T.R. & Heller K.S. (2002). The Harlem palliative care network. Journal of Palliative Medicine, 5, 781792.
Payne S., Chapman A., Holloway M., et al. (2005). Chinese community views: Promoting cultural competence in palliative care. Journal of Palliative Care, 21, 111116.
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, 173184.
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, 113121.
Rosenthal C.J. (1985). Kinkeeping in the family division of labor. Journal of Marriage and Family Therapy, 47, 965974.
Rosenwax L.K. & McNamara B.A. (2006). Who receives specialist palliative care in western Australia—and who misses out. Palliative Medicine, 20, 439445.
Scharlach A.E. (1994). Caregiving and employment: Competing or complementary roles? The Gerontologist, 29, 382387.
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, 404411.
Schwartz F.E. (1993). The older woman as caregiver: A feminist perspective. Perspectives, 17, 610.
Shawler C. (2007). Empowerment of aging mothers and daughters in transition during a health crisis. Qualitative Health Research, 17, 838849.
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. 109124. Washington, DC: American Psychological Association Press.
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. & 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. 149168. London, England: Oxford University Press.
Stajduhar K.I. & Davies B. (1998). Death at home: Challenges for families and directions for the future. Journal of Palliative Care, 14, 814.
Stajduhar K.I. & Davies B. (2005). Variations in and factors influencing family members' decisions for palliative home care. Palliative Medicine, 19, 2132.
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, 163173.
Sue D.W. & Sue D. (2008). Counseling the Culturally Diverse: Theory and practice (5th ed.). Hoboken, NJ: John Wiley & Sons.
Szapocznik J., Scopetta M.A., Ceballos A., et al. (1994). Understanding supporting and empowering families: From microanalysis to macrointerventions [Special Section]. Family Psychologist, 10, 2327.
Taylor J.S. (2003). Confronting “culture” in medicine's “culture of no culture.” Academic Medicine, 78, 555559.
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. 2047. New York: Springer.
Turner L. (2005). Is cultural sensitivity sometimes insensitive? Canadian Family Physician, 51, 478480.
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, 468477.
Ward-Griffin C., Oudshoorn A., Clark K., et al. (2007). Mother-adult daughter relationships within dementia care. Journal of Family Nursing, 13, 1332.
West C. & Zimmerman D. (1987). Doing gender. Gender & Society, 1, 125151.
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.
Wuest J. (2001). Precarious ordering: Toward a formal theory of women's caring. Health Care for Women International, 22, 167193.
Yalom I.D. (2008). Staring at the Sun: Overcoming the Terror of Death. San Francisco, CA: Jossey-Bass.
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