Hostname: page-component-586b7cd67f-rcrh6 Total loading time: 0 Render date: 2024-11-20T09:40:02.907Z Has data issue: false hasContentIssue false
  • English
  • Français

Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center

Published online by Cambridge University Press:  01 December 2003

SHIRLEY S. HWANG ,
VICTOR T. CHANG ,
YVETTE ALEJANDRO ,
PAMELA OSENENKO ,
CASAUNDRA DAVIS ,
JANET COGSWELL ,
SHANTHI SRINIVAS  and
BASIL KASIMIS
SHIRLEY S. HWANG
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey Patient Care Services, VA New Jersey Health Care System, East Orange, New Jersey University of Medicine and Dentistry of New Jersey/School of Nursing, Newark, New Jersey
VICTOR T. CHANG
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey University of Medicine and Dentistry of New Jersey/New Jersey Medical School, Newark, New Jersey
YVETTE ALEJANDRO
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey Patient Care Services, VA New Jersey Health Care System, East Orange, New Jersey
PAMELA OSENENKO
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey Patient Care Services, VA New Jersey Health Care System, East Orange, New Jersey
CASAUNDRA DAVIS
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey Patient Care Services, VA New Jersey Health Care System, East Orange, New Jersey
JANET COGSWELL
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey Patient Care Services, VA New Jersey Health Care System, East Orange, New Jersey
SHANTHI SRINIVAS
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey University of Medicine and Dentistry of New Jersey/New Jersey Medical School, Newark, New Jersey
BASIL KASIMIS
Affiliation:
Section of Hematology/Oncology, VA New Jersey Health Care System, East Orange, New Jersey University of Medicine and Dentistry of New Jersey/New Jersey Medical School, Newark, New Jersey
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives: Caregiver outcomes among those caring for symptomatic advanced cancer patients at VA Medical Centers have not been well reported. The purposes of this study were (1) to identify the caregiver characteristics and their unmet needs; (2) to examine the association between caregiver unmet needs, caregiver burden, and caregiver satisfaction; and (3) to identify the independent predictors of different caregiver outcomes.

Methods: One hundred caregivers completed three caregiver outcomes instruments: Family Inventory of Needs (FIN), Care Strain Index (CSI), and Family Satisfaction with Advanced Cancer Care (FAMCARE). The caregivers' demographics and their function, depression, health status, and social support status as well as the caregivers' perception of the patients' unmet needs (PPUN) were obtained. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. Pearson correlation and stepwise multivariate regression analyses were performed.

Results: The median number of unmet needs was 2 and the median CSI score was 4. Most of unmet needs were related to information needs (needing more information related to home care, finding help with the problems at home, and disease prognosis) and symptom management. The majority of caregivers were satisfied or very satisfied by the care patients received. Spouse caregivers (N = 60, 60%) were significantly older (p = 0.006) with higher unemployment rates (p = 0.001), higher depression scores (p = 0.04), and lower social support scores (p < 0.0001) than nonspouse caregivers (N = 40, 40%). The PPUN predicted caregiver burden and the presence of caregiver unmet needs independently. The presence of caregiver unmet needs was the only independent predictor of caregiver satisfaction. Caregivers with a high PPUN and higher depression score experienced a higher burden.

Significance of the research: The caregiver outcome model is proposed and needs to be further validated in a new cohort of caregivers.

Keywords

Caregiver unmet needsCaregiver burdenCaregiver satisfactionUnmet needs of advanced cancer patientsPalliative careSpouse
Type
Research Article
Information
Palliative & Supportive Care , Volume 1 , Issue 4 , December 2003 , pp. 319 - 329
Copyright
© 2003 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Andrews, S.C. (2001). Caregiver burden and symptom distress in people with cancer receiving hospice care. Oncology Nursing Forum, 28, 1469–1474.Google Scholar
Bascom, P.B. & Tolle, S.W. (1995). Care of the family when the patient is dying. The Western Journal of Medicine, 163, 292–296.Google Scholar
Brazierm, J., Jones, N., & Kind, P. (1993). Testing the validity of the Euroqol and comparing it with the SF-36 Health Survey questionnaire. Quality of Life Research, 2, 169–180.Google Scholar
Broadhead, W.E., Gehlbach, S.H., De Gruy, & F., et al. (1988). The Duke-UNC Functional Social Support Questionnaire: Measurement of social support in family medicine patients. Medical Care, 26, 709–723.Google Scholar
Chang, V.T., Hwang, S.S., Feuerman, & M., et al. (2000). Symptom and quality of life survey of medical oncology patients at a Veterans Affairs Medical Center. A role for symptom assessment. Cancer, 88, 1175–1183.Google Scholar
Dyck, S. & Wright, K. (1985). Family perceptions: The role of the nurse throughout an adult's cancer experience. Oncology Nursing Forum, 12, 53–56.Google Scholar
Fisher, E.S. & Welch, H.G. (1995). The future of the Department of Veterans Affairs health care system. Journal of the American Medical Association, 273, 651–655.Google Scholar
Gotay, C.C. (1984). The experience of cancer during early and advanced stages: The views of patients and their mates. Social Science & Medicine, 18, 605–613.Google Scholar
Harding, R. & Higginson, I. (2001). Working with ambivalence: Informal caregivers of patients at the end of life. Supportive Care in Cancer, 9, 642–645.Google Scholar
Harrington, V., Lackey, N.R., & Gates, M.F. (1996). Needs of caregivers of clinic and hospice cancer patients. Cancer Nursing, 19, 118–125.Google Scholar
Harris, R.E., Hebert, J.R., & Wynder, E.L. (1989). Cancer risk in male veterans utilizing the Veterans Administration medical system. Cancer, 64, 1160–1168.Google Scholar
Hileman, J.W., Lackey, N.R., & Hassanein, R.S. (1992). Identifying the needs of home caregivers of patients with cancer. Oncology Nursing Forum, 19, 771–777.Google Scholar
Houts, P.S., Yasko, J.M., Harvey, & H.A., et al. (1988). Unmet needs of persons with cancer in Pennsylvania during the period of terminal care. Cancer, 62, 627–634.Google Scholar
Hwang, S.S., Chang, V.T., Alejandro, & Y., et al. (2001). Unmet needs, depression, and symptom distress in advanced cancer patients and their impact on caregiver burden at a VA medical center. Proceedings American Society of Clinical Oncology, 20, 395a (Abstract 1576).Google Scholar
Hwang, S.S., Chang, V.T., Fairclough, & D.L., et al. (2003). Longitudinal quality of life in advanced cancer patients: Pilot study results from a VA medical cancer center. Journal of Pain and Symptom Management, 25, 225–235.Google Scholar
Institute of Medicine National Research Council. (2001). Improving palliative care for cancer: summary and recommendations. National Academy Press, Washington, DC.
Johnston, G. & Abraham, C. (1995). The WHO objectives for palliative care: To what extent are we achieving them? Palliative Medicine, 9, 123–127.Google Scholar
Kaasa, T., Loomis, J., Gillis, & K., et al. (1997). The Edmonton functional assessment tool: Preliminary development and evaluation for use in palliative care. Journal of Pain and Symptom Management, 13, 10–19.Google Scholar
Kazis, L.E., Miller, D.R., Clark, & J., et al. (1998). Health-related quality of life in patients served by the Department of Veterans Affairs. Archives of Internal Medicine, 158, 626–632.Google Scholar
Kristjanson, L.J. (1993). Validity and reliability testing of the FAMCARE Scale: Measuring family satisfaction with advanced cancer care. Social Science & Medicine, 5, 693–701.Google Scholar
Kristjanson, L.J., Atwood, J., & Degner, L.F. (1995). Validity and reliability of the Family Inventory of Needs (FIN): Measuring the care needs of families of advanced cancer patients. Journal of Nursing Measurement, 3, 109–126.Google Scholar
Laizner, A.M., Yost, L.M., Barg, & F.K., et al. (1993). Needs of family caregivers of persons with cancer: A review. Seminars in Oncology Nursing, 9, 114–120.Google Scholar
Lesher, E.L. & Berryhill, J.S. (1994). Validation of the Geriatric Depression Scale–Short Form among inpatients. Journal of Clinical Psychology, 50, 256–260.Google Scholar
Osse, B.H., Vernooij-Dassen, M.J., de Vree, & B.P., et al. (2000). Assessment of the need of palliative care as perceived by individual cancer patients and their families. Cancer, 88, 900–911.Google Scholar
Payne, S., Smith, P., & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.Google Scholar
Pearlin, L.I. & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19, 2–21.Google Scholar
Pearlin, L.I., Mullan, J.T., Semple, & S.J., et al. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594.Google Scholar
Ramirez, A., Addington-Hall, J., & Richards, M. (1998). ABC of palliative care. The carers. British Medical Journal, 316, 208–211.Google Scholar
Robinson, B.C. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38, 344–348.Google Scholar
Rose, K. (1999). A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. Journal of Clinical Nursing, 8, 81–88.Google Scholar
Siegel, K., Raveis, V.H., Houts, & P., et al. (1991). Caregiver burden and unmet patients needs. Cancer, 68, 1131–1140.Google Scholar
Soothill, K., Morris, S.M., Harman, & J.C., et al. (2001). Informal carers of cancer patients: What are their unmet psychosocial needs? Health & Social Care in the Community, 9, 464–475.Google Scholar
Steele, R.G. & Fitch, M.I. (1996). Needs of family caregivers of patients receiving hospice care for cancer. Oncology Nursing Forum, 23, 823–828.Google Scholar
Teno, J.M., Okum, S.N., Casey, & V., et al. (2000). Toolkit of instruments to measure end of life care (TIME), Resource Guide: Achieving quality of care at life's end. Brown University. Available at http://www.chcr.brown.edu/pcoc/toolkit.htm.
Wilson, S. & Morse, J.M. (1991). Living with a wife undergoing chemotherapy. Image—Journal of Nursing Scholarship, 23, 78–84.Google Scholar
Zarit, S.H., Orr, N.K., & Zarit, J.M. (1985). The burden victims of Alzheimer's disease: Families under stress. New York: University Press.