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Caregivers’ differing needs across key experiences of the advanced cancer disease trajectory

Published online by Cambridge University Press:  28 July 2008

Lori L. DuBenske ,
Kuang-Yi Wen ,
David H. Gustafson ,
Charles A. Guarnaccia ,
James F. Cleary ,
Susan K. Dinauer  and
Fiona M. Mctavish
Lori L. DuBenske*
Affiliation:
Center for Health Enhancement Systems Studies, University of Wisconsin, Madison, Wisconsin
Kuang-Yi Wen
Affiliation:
Center for Health Enhancement Systems Studies, University of Wisconsin, Madison, Wisconsin
David H. Gustafson
Affiliation:
Center for Health Enhancement Systems Studies, University of Wisconsin, Madison, Wisconsin
Charles A. Guarnaccia
Affiliation:
Department of Psychology, University of North Texas, Denton, Texas
James F. Cleary
Affiliation:
Carbone Comprehensive Cancer Center, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin
Susan K. Dinauer
Affiliation:
Center for Health Enhancement Systems Studies, University of Wisconsin, Madison, Wisconsin
Fiona M. Mctavish
Affiliation:
Center for Health Enhancement Systems Studies, University of Wisconsin, Madison, Wisconsin
*
Address correspondence and reprint requests to: Lori DuBenske, 1513 University Avenue, ME 4105, Madison, WI 53706. E-mail: [email protected]
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Abstract

Objectives:

Familial caregivers are providing increasing amounts of care to advanced cancer patients. Increased understanding of caregivers’ needs is vital in providing necessary support to lessen caregiver burden and morbidity. Current literature has identified caregiver and patient needs at broad stages of the cancer trajectory; however, such broad stages may be too general to inform a practice of targeting specific interventions when they have the greatest utility. This study examines a variety of particular needs across a number of more discrete illness-related transition experiences specifically in the advanced cancer disease trajectory.

Methods:

One hundred fifty-nine female informal caregivers of people with advanced cancer completed a needs assessment survey.

Results:

Analyses of these cross-sectional retrospective-report data reveal that cancer caregiver needs vary across specific key experiences occurring within the broader stages of illness identified by current literature. Furthermore, caregivers have unique needs during bereavement.

Significance of results:

Although the sample characteristics are demographically limited, this study provides preliminary evidence that the broad stages are not specific enough increments for effectively examining caregiver needs and supports the need for more precise distribution of cancer-related information at more discrete times in the illness course.

Keywords

Caregiver needsEnd of lifeCancerPalliative careBereavement
Type
Original Articles
Information
Palliative & Supportive Care , Volume 6 , Issue 3 , September 2008 , pp. 265 - 272
Copyright
Copyright © Cambridge University Press 2008

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References

REFERENCES

Arno, P.S., Levine, C., & Memmott, M.M. (1999). The economic value of informal caregiving. Health Affairs, 18, 182–188.CrossRefGoogle ScholarPubMed
Barg, F., Pasacreta, J., Nuamah, I., et al. (1998). A description of a psychoeducational intervention for family caregivers of cancer patients. Journal of Child and Family Nursing, 4, 394–413.CrossRefGoogle Scholar
Bass, D.M. & Bowman, K. (1990). The transition from caregiving to bereavement: The relationship of care-related strain and adjustment to death. The Gerontologist, 30, 35–42.CrossRefGoogle ScholarPubMed
Bernard, L.L. & Guarnaccia, C.A. (2003). Two models of caregiver strain and bereavement adjustment: A comparison of husband and daughter caregivers of breast cancer hospice patients. The Gerontologist, 43, 808–816.CrossRefGoogle ScholarPubMed
Bernard, L. L. (2004). Needs of familial caregivers of cancer patients across the advanced cancer disease trajectory. Dissertation. Denton, TX: University of North Texas.Google Scholar
Blanchard, C., Albrecht, T. & Ruckdeschel, J. (1997). The crisis of cancer: Psychological impact on family caregivers. Oncology, 11, 189–194.Google ScholarPubMed
Bollen, K.A. (1989). Structural Equations with Latent Variables. New York: Wiley.CrossRefGoogle Scholar
Gustafson, D.H., Arora, N.K., Nelson, E.C., et al. (2001). Increasing understanding of patient needs during and after hospitalization. Journal of Qualitative Improvement, 27, 81–92.Google ScholarPubMed
Haley, W. (2003). Family caregivers of elderly patients with cancer: Understanding and minimizing the burden of care. Journal of Supportive Oncology, suppl. 2, 25–29.Google ScholarPubMed
Hardwick, C. & Lawson, N. (1995). The information and learning needs of the caregiving family of the adult cancer patient. European Journal of Cancer Care, 4, 118–121.CrossRefGoogle Scholar
Harrison, D., Galloway, S., Graydon, J., et al. (1999). Information needs and preference for information of women with breast cancer over a course of radiation therapy. Patient Education and Counseling, 38, 217–225.CrossRefGoogle Scholar
Hileman, J.W. & Lackey, N.R. (1990). Self-identified needs of patients with cancer at home and their home caregivers: A descriptive study. Oncology Nursing Forum, 17, 907–913.Google ScholarPubMed
Hileman, J.W., Lackey, N.R., & Hassein, R.S. (1992). Identifying the needs of home caregivers of patients with cancer. Oncology Nursing Forum, 19, 771–777.Google ScholarPubMed
Holland, J. (1989). Clinical course of cancer. In Handbook of Psycho-Oncology: Psychological Care of the Patient with Cancer, Holland, J.C. & Rowland, J.H. (eds.), pp. 75–100. New York: Oxford University Press.Google Scholar
Houts, P., Nezu, A., Nezum, C., et al. (1996). The prepared family caregiver: A problem-solving approach to family caregiver education. Patient Education and Counseling, 27, 63–73.CrossRefGoogle ScholarPubMed
Longman, A.J., Atwood, J.R., Blank-Sherman, J., et al. (1992). Care needs of home-based cancer patients and their caregivers: Quantitative findings. Cancer Nursing, 15, 182–190.CrossRefGoogle ScholarPubMed
Mills, M. & Davidson, R. (2002). Cancer patients’ sources of information: Use and quality issues. Psychooncology, 11, 371–378.CrossRefGoogle ScholarPubMed
Silveira, J.M. & Winstead-Fry, P. (1997). The needs of patients with cancer and their caregivers in rural areas. Oncology Nursing Forum, 24, 71–74.Google ScholarPubMed
Speice, J., Harkness, J., Laneri, H., Frankel, R., Roter, D., Kornblith, A.B., et al. (2000). Involving family members in cancer care: Focus group considerations of patients and oncological providers. Psychooncology, 9, 101–112.3.0.CO;2-D>CrossRefGoogle ScholarPubMed
Steele, R. G., & Fitch, M. I. (1996). Needs of family caregivers of patients receiving home hospice care for cancer. Oncology Nursing Forum, 23, 823–828.Google ScholarPubMed
Stetz, K.M. & Hanson, W.K. (1992). Alterations in perceptions of caregiving demands in advanced cancer during and after the experience. Hospice Journal, 8, 21–34.CrossRefGoogle ScholarPubMed
Thielemann, P. (2000). Educational needs of home caregivers of terminally ill patients: Literature review. American Journal of Hospice and Palliative Care, 17, 253–257.CrossRefGoogle ScholarPubMed
Wiles, J. (2003). Daily geographies of caregivers: Mobility, routine, scale. Social Science and Medicine, 57, 1307–1325.CrossRefGoogle ScholarPubMed
Wingate, A.L. & Lackey, N.R. (1989). A description of the needs of noninstitutionalized cancer patients and their primary caregivers. Cancer Nursing, 12, 216–225.CrossRefGoogle Scholar