Journal Club

Caring for the Caregiver

Geline Joy Tamayo

Anita Broxson

Mark F. Munsell

Marlene Z. Cohen

caregivers, quality of life, leukemia, chemotherapy
ONF 2009, 37(1), E50-E57. DOI: 10.1188/10.ONF.E50-E57

Purpose/Objectives: To describe the quality of life (QOL) and well-being of caregivers of patients receiving outpatient chemotherapy for leukemia and to identify strategies to promote the best possible QOL and well-being for the caregivers.

Design: Descriptive, cross-sectional study.

Setting: Ambulatory treatment center of a major comprehensive cancer center in the southern United States.

Sample: Convenience sample of 194 caregivers of patients receiving chemotherapy for leukemia.

Methods: Participants completed the Caregiver Quality-of-Life-Cancer Scale, the Caregiver Well-Being Scale, and the Learning Needs Questionnaire developed by the authors. Descriptive statistics were used to summarize the demographic characteristics of the caregivers, and exploratory factor analysis was performed to identify meaningful factors.

Main Research Variables: QOL, well-being, and learning needs.

Findings: Caregivers identified burden as their most important concern for QOL. Key factors identified with caregivers' well-being were expression of feelings and household maintenance. Caregivers identified giving medications and managing the side effects as crucial to learning needs. Communication, positive attitudes, support, and education were important in promoting QOL for the caregivers.

Conclusions: Caregiving for a patient receiving chemotherapy for leukemia influences the QOL and well-being of the caregiver.

Implications for Nursing: This study highlights the need for better nurse-caregiver communication and education, particularly in the areas of symptom management and medication administration. Additional research should focus on factors that affect caregivers' QOL, their educational needs, and improved interventions for delivering new information or reinforcing old information.

Jump to a section


    Andrews, S.C. (2001). Caregiver burden and symptom distress. Oncology Nursing Forum, 28, 1469-1474.
    Baider, L., & Bengel, J. (2001). Cancer and the spouse: Gender-related differences in dealing with healthcare and illness. Critical Reviews in Oncology and Hematology, 40, 115-123. doi: 10.1016/S1040-8428 (01)00137-8
    Berg-Weger, M., Rubio, D.M., & Tebb, S.S. (2000). The Caregiver Well-Being scale revisited. Health and Social Work, 25, 255-263.
    Boyle, D., Blodgett, L., Gnesdiloff, S., White, J., Bamford, A.M., Sheridan, M., & Beveridge, R. (2000). Caregiver quality of life after autologous bone marrow transplantation. Cancer Nursing, 23, 193-203. doi: 10.1097/00002820-200006000-00006
    Cameron, J.I., Franche, R.L., Cheung, A.M., & Stewart, D.E. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94, 521-527. doi: 10.1002/cncr.10212
    Cattell, R.B. (1966). The screen test for the number of factors. Multivariate Behavioral Research, 1, 245-276. doi: 10.1207/s15327906mbr0102_10
    Crowe, H., & Costello, A.J. (2003). Prostate cancer: Perspectives on quality of life and impact of treatment on patients and their partners. Urologic Nursing, 23, 279-285.
    Ferrans, C.E. (2005). Quality of life as an outcome of cancer care. In C.H. Yarbro, M.H. Frogge, M. Goodman, & S.L. Groenwald (Eds.), Cancer nursing: Principles and practice (6th ed., pp. 184-197). Sudbury, MA: Jones and Bartlett.
    Gaston-Johansson, F., Lachica, E.M., Fall-Dickson, J.M., & Kennedy, M.J. (2004). Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncology Nursing Forum, 31, 1161-1169. doi: 10.1188/04.ONF.1161-1169
    Gaugler, J.E., Given, W.C., Linder, J., Kataria, R., Tucker, G., & Regine, W.F. (2008). Work, gender, and stress in family care giving. Supportive Care in Cancer, 16, 347-357. doi: 10.1007/s00520-007-0331-y
    Giarelli, E., Pisano, R., & McCorkle, R. (2000). Stable and able. A standardized nursing intervention protocol for patients with cancer redefines the relationship among patients, caretakers, and nurses. American Journal of Nursing, 100, 26-31. doi: 10.2307/3522186
    Glozman, J.M. (2004). Quality of life of caregivers. Neuropsychology Review, 14, 183-196. doi: 10.1007/s11065-004-8158-5
    Goldstein, H. (1990). Strength or pathology: Ethical and rhetorical contrasts in approaches to practice. Families in Society, 71, 267-275.
    Gozum, S., & Ackay, D. (2005). Response to the needs of Turkish chemotherapy patients and their families. Cancer Nursing, 28, 469-475. doi: 10.1097/00002820-200511000-00010
    Hagedoorn, M., Buunk, B.P., Kuijer, R.G., Wobbes, T., & Sanderman, R. (2000). Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. Psycho-Oncology, 9, 232-242. doi: 10.1002/1099-1611(200005/06)9:3<232::AID-PON458>3.0.CO;2-J
    Iconomou, G., Vagenakis, A.G., & Kalofonos, H.P. (2001). The informational needs, satisfaction with communication, and psychological status of primary caregivers of cancer patients receiving chemotherapy. Supportive Care in Cancer, 9, 591-596. doi: 10.1007/s005200100259
    Kaiser, H.F. (1970). A second generation little jiffy. Psychometrika, 35, 401-415. doi: 10.1007/BF02291817
    Kitrungote, L., & Cohen, M.Z. (2006). Quality of life of family caregivers of patients with cancer: A literature review. Oncology Nursing Forum, 33, 625-632. doi: 10.1188/06.ONF.625-632
    Langer, S., Abrams, J., & Syrjala, K. (2003). Caregiver and patient marital satisfaction and affect following hematopoietic stem cell transplantation: A prospective longitudinal investigation. Psycho-Oncology, 12, 239-253. doi: 10.1002/pon.633
    Lloyd-Williams, M., Dennis, M., & Taylor, F. (2004). A prospective study to determine the association between physical symptoms and depression in patients with advanced cancer. Palliative Medicine, 18, 558-563. doi: 10.1191/0269216304pm923oa
    McIlfatrick, S., Sullivan, K., & McKenna, H. (2005). What about the carers? Exploring the experience of caregivers in a chemotherapy day hospital setting. European Journal of Oncology Nursing, 10, 294-303. doi: 10.1016/j.ejon.2005.12.003
    Mellon, S. (2002). Comparisons between cancer survivors and family members on meaning of the illness and family quality of life. Oncology Nursing Forum, 29, 1117-1125. doi: 10.1188/02.ONF.1117-1125
    Nijboer, C., Triemstra, M., Tempelaar, R., Mulder, M., Sanderman, R., & van den Bos, G.A. (2000). Patterns of caregiver experiences among partners of cancer patients. Gerontologist, 40, 738-746.
    Northouse, L.L., Mood, D., Templin, T., Mellon, S., & George, T. (2000). Couples' patterns of adjustment to colon cancer. Social Science and Medicine, 50, 271-284. doi: 10.1016/S0277-9536(99)00281-6
    Northouse, L.L., Mood, D.W., Montie, J.E., Sandler, H.M., Forman, J.D., Hussain, M., … Kershaw, T. (2007). Living with prostate cancer: Patients' and spouses' psychosocial status and quality of life. Journal of Clinical Oncology, 25, 4171-4177. doi: 10.1200/JCO.2006.09.6503
    Pasacreta, J.V., & McCorkle, R. (2000). Cancer care: Impact of interventions on caregiver outcomes. Annual Review of Nursing Research, 18, 127-148.
    Pinquart, M., & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family care giving: A meta-analysis. Gerontologist, 45, 90-106.
    Savoie, M.L., Nevil, T.J., Song, K.W., Forrest, D.L., Hogge, D.E., Nantel, S.H., … Lavoie, T.C. (2006). Shifting to outpatient management of acute myeloid leukemia. Annals of Oncology, 17, 763-768. doi: 10.1093/annonc/mdl011
    Schumacher, K.L. (1996). Reconceptualizing family care giving: Family-based illness care during chemotherapy. Research in Nursing and Health, 19, 261-271. doi: 10.1002/(SICI)1098-240X(199608)19:4<261::AID-NUR1>3.0.CO;2-G
    Stevens, J.P. (1996). Applied multivariate statistics for the social sciences (3rd ed.). Mahwah, NJ: Lawrence Erlbaum Associates.
    Vedhara, K., Shanks, N., Anderson, S., & Lightman, S. (2000). The role of stressors and psychosocial variables in the stress process: A study of chronic caregiver stress. Psychosomatic Medicine, 62, 374-385.
    Weitzner, M.A., & McMillan, S.C. (1999). The Caregiver Quality of Life Index-Cancer (CQOLC) scale: Revalidation in a home hospice setting. Journal of Palliative Care, 15, 13-20.
    Weitzner, M.A., McMillan, S.C., & Jacobsen, P.B. (1999). Family caregiver quality of life: Differences between curative and palliative cancer treatment settings. Journal of Pain and Symptom Management, 17, 418-428. doi: 10.1016/S0885-3924(99)00014-7