Hostname: page-component-78c5997874-xbtfd Total loading time: 0 Render date: 2024-11-18T02:23:48.617Z Has data issue: false hasContentIssue false
  • English
  • Français

Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer

Published online by Cambridge University Press:  28 September 2010

Ross E. O'Hara ,
Jay G. Hull ,
Kathleen D. Lyons ,
Marie Bakitas ,
Mark T. Hegel ,
Zhongze Li  and
Tim A. Ahles
Ross E. O'Hara*
Affiliation:
Department of Psychological and Brain Sciences, Dartmouth College, Hanover, New Hampshire
Jay G. Hull
Affiliation:
Department of Psychological and Brain Sciences, Dartmouth College, Hanover, New Hampshire
Kathleen D. Lyons
Affiliation:
Department of Psychiatry, Dartmouth Medical School, Hanover, New Hampshire
Marie Bakitas
Affiliation:
Department of Anesthesiology, Dartmouth Medical School, Hanover, New Hampshire Section of Palliative Medicine, Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire School of Nursing, Yale University, New Haven, Connecticut
Mark T. Hegel
Affiliation:
Department of Psychiatry, Dartmouth Medical School, Hanover, New Hampshire
Zhongze Li
Affiliation:
Biostatistics Shared Resource, Norris Cotton Cancer Center, Lebanon, New Hampshire
Tim A. Ahles
Affiliation:
Department of Psychiatry, Dartmouth Medical School, Hanover, New Hampshire Department of Psychiatry, Memorial Sloan-Kettering Cancer Center, New York, New York
*
Address correspondence and reprint requests to: Ross O'Hara, Department of Psychological and Brain Sciences, Hinman Box 6207, Dartmouth College, Hanover, NH 03755. E-mail: ross.ohara@dartmouth.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients' quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden.

Method:

Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents' caregivers were asked to complete an after-death interview regarding the quality of care that the patient received.

Results:

There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that higher caregiver objective burden and stress burden were related to lower patient quality of life, higher symptom intensity, and higher depressed mood. Caregivers who perceived that patients had unmet needs at end of life reported higher objective burden, and those who perceived that patients were not treated with respect reported higher demand burden.

Significance of results:

The results indicate that a successful patient-focused intervention did not have a similar beneficial effect on caregiver burden. Future interventions should focus on caregivers as well as patients, with particular attention to caregivers' perceptions of patient care, and seek to change both negative and positive effects of informal caregiving.

Keywords

Caregiver burdenInterventionPalliative careCancer
Type
Original Articles
Information
Palliative & Supportive Care , Volume 8 , Issue 4 , December 2010 , pp. 395 - 404
Copyright
Copyright © Cambridge University Press 2010

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

American Cancer Society. Cancer Facts & Figures 2009. http://www.cancer.org/Google Scholar
Bakitas, M., Lyons, K.D., Hegel, M.T., et al. (2009a). The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: Baseline findings, methodological challenges, and solutions. Palliative and Supportive Care, 7, 75–86.CrossRefGoogle Scholar
Bakitas, M., Lyons, K.D., Hegel, M.T., et al. (2009b). Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer. Journal of the American Medical Association, 302, 741–749.CrossRefGoogle ScholarPubMed
Beach, S.R., Schulz, R., Yee, J.L., et al. (2000). Negative and positive health effects of caring for a disabled spouse: Longitudinal findings from the caregiver health effects study. Psychology and Aging, 15, 259–271.CrossRefGoogle ScholarPubMed
Brady, M.J. & Cella, D. (1999). Assessing quality of life in palliative care. Cancer Treatment and Research, 100, 203–216.CrossRefGoogle ScholarPubMed
Braun, M., Mikulincer, M., Rydall, A., et al. (2007). Hidden morbidity in cancer: Spouse caregivers. Journal of Clinical Oncology, 25, 4829–4834.CrossRefGoogle ScholarPubMed
Bruera, E. (1996). Patient assessment in palliative cancer care. Cancer Treatment Reviews, 22 (Supplement A), 3–12.CrossRefGoogle ScholarPubMed
Bruera, E., Kuehn, N., Miller, M.J., et al. (1991). The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. Journal of Palliative Care, 7, 6–9.CrossRefGoogle ScholarPubMed
Christakis, N.A. & Allison, P.D. (2006). Mortality after the hospitalization of a spouse. New England Journal of Medicine, 354, 719–730.CrossRefGoogle ScholarPubMed
Clark, M.M., Rummans, T.A., Sloan, J.A., et al. (2006). Quality of life of caregivers of patients with advanced-stage cancer. American Journal of Hospice and Palliative Medicine, 23, 185–191.CrossRefGoogle ScholarPubMed
Elwert, F. & Christakis, N.A. (2008). The effect of widowhood on mortality by the causes of death of both spouses. American Journal of Public Health, 98, 2092–2098.CrossRefGoogle ScholarPubMed
Fang, C.Y., Manne, S.L. & Pape, S.J. (2001). Functional impairment, marital quality, and patient psychological distress as predictors of psychological distress among cancer patients' spouses. Health Psychology, 20, 452–457.CrossRefGoogle ScholarPubMed
Giarelli, E., Pisano, R. & McCorkle, R. (2000). Stable & able. American Journal of Nursing, 100, 26–32.Google ScholarPubMed
Given, B., Wyatt, G., Given, C., et al. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum, 31, 1105–1115.CrossRefGoogle ScholarPubMed
Hagedoorn, M., Sanderman, R., Bolks, H.N. et al. (2008). Distress in couples coping with cancer: A meta-analysis and critical review of role and gender effects. Psychological Bulletin, 134, 1–30.CrossRefGoogle Scholar
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
Harding, R., Higginson, I.J. & Donaldson, N. (2003). The relationship between patient characteristics and carer psychological status in home palliative cancer care. Supportive Care in Cancer, 11, 638–643.CrossRefGoogle ScholarPubMed
Hebert, R.S., Arnold, R.M. & Schulz, R. (2007). Improving well-being in caregivers of terminally ill patients: Making the case for patient suffering as a focus of intervention research. Journal of Pain and Symptom Management, 34, 539–546.CrossRefGoogle ScholarPubMed
Honea, N.J., Brintnall, R., Given, B., et al. (2008). Putting evidence into practice: Nursing assessment and interventions to reduce family caregiver strain and burden. Clinical Journal of Oncology Nursing, 12, 507–516.CrossRefGoogle Scholar
Hudson, P.L., Aranda, S. & Hayman-White, K. (2005). A psycho-educational intervention for family caregivers of patients receiving palliative care: A randomized control trial. Journal of Pain and Symptom Management, 30, 329–341.CrossRefGoogle Scholar
Janda, M., Seginga, S., Langbecker, D., et al. (2007). Quality of life among patients with a brain tumor and their carers. Journal of Psychosomatic Research, 63, 617–623.CrossRefGoogle ScholarPubMed
Jepson, C., McCorkle, R., Adler, D., et al. (1999). Effects of home care on caregivers' psychosocial status. Journal of Nursing Scholarship, 31, 115–120.Google ScholarPubMed
Kozachik, S.L., Given, C.W., Given, B.A., et al. (2001). Improving depressive symptoms among caregivers of patients with cancer: Results of a randomized clinical trial. Oncology Nursing Forum, 28, 1149–1157.Google ScholarPubMed
Kurtz, M.E., Kurtz, J.C., Given, C.W., et al. (2005). A randomized, controlled trial of a patient/caregiver symptom control intervention: Effects on depressive symptomatology of caregivers of cancer patients. Journal of Pain and Symptom Management, 30, 112–122.CrossRefGoogle ScholarPubMed
Lorenz, K.A., Lynn, J., Dy, S.M., et al. (2008). Evidence for improving palliative care at the end of life: A systematic review. Annals of Internal Medicine, 148, 147–161.CrossRefGoogle ScholarPubMed
Lyons, K.D., Bakitas, M., Hegel, M.T., et al. (2009). Reliability and validity of the Functional Assessment of Chronic Illness Therapy — Palliative Care (FACIT-Pal) scale. Journal of Pain and Symptom Management, 37, 23–32.CrossRefGoogle ScholarPubMed
McCorkle, R., Robinson, L., Nuamah, I., et al. (1998). The effects of home nursing care for patients during terminal illness on the bereaved's psychological distress. Nursing Research, 47, 2–10.CrossRefGoogle ScholarPubMed
McMillan, S.C., Small, B.J., Weitzner, M., et al. (2005). Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer, 106, 214–222.CrossRefGoogle Scholar
McPherson, C.J. & Addington-Hall, J.M. (2003). Judging the quality of care at the end of life: Can proxies provide reliable information? Social Science & Medicine, 56, 95–109.CrossRefGoogle ScholarPubMed
Miaskowski, C., Kragness, L., Dibble, S., et al. (1997). Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. Journal of Pain and Symptom Management, 13, 138–147.CrossRefGoogle ScholarPubMed
Montgomery, R.J.V., Borgatta, E.F. & Borgatta, M.L. (2000). Societal and family change in the burden of care. In Who Should Care for the Elderly? Liu, W.T. & Kendig, H. (eds). pp. 27–54. Singapore: Singapore University Press.CrossRefGoogle Scholar
Nijboer, C., Tempelaar, R., Sanderman, R., et al. (1998). Cancer and caregiving: The impact on the caregiver's health. Psycho-Oncology, 7, 3–13.3.0.CO;2-5>CrossRefGoogle ScholarPubMed
Pinquart, M. & Sörenson, S. (2003a). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18, 250–267.CrossRefGoogle ScholarPubMed
Pinquart, M. & Sörenson, S. (2003b). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: A meta-analysis. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 58, 112–128.CrossRefGoogle ScholarPubMed
Plutchick, R. & Conte, H.R. (1989). Self-report scales for the measurement of depression. Psychiatric Annals, 19, 367–371.CrossRefGoogle Scholar
Radloff, L.S. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–392.CrossRefGoogle Scholar
Rhee, Y.S., Yun, Y.H., Park, S., et al. (2008). Depression in family caregivers of cancer patients: The feeling of burden as a predictor of depression. Journal of Clinical Oncology, 26, 5890–5895.CrossRefGoogle Scholar
Ringdal, G.I., Ringdal, K., Jordhøy, M.S., et al. (2004). Health-related quality of life (HRQOL) in family members of cancer victims: Results from a longitudinal intervention study in Norway and Sweden. Palliative Medicine, 18, 108–120.CrossRefGoogle ScholarPubMed
Schulz, R. & Beach, S.R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282, 2215–2219.CrossRefGoogle ScholarPubMed
Scott, J.A. (2006). Informal caregiving. http://www.umaine.edu/mainecenteronaging/documents/issuebriefinformalcaregiving.pdf.Google Scholar
Sörenson, S., Pinquart, M. & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. Gerontologist, 42, 356–372.CrossRefGoogle Scholar
SPSS Statistics (Version 17.0) (2008). Chicago: SPSS Inc.Google Scholar
Teno, J.M., Clarridge, B., Casey, V., et al. , (2001). Validation of toolkit after-death bereaved family member interview. Journal of Pain and Symptom Management, 22, 752–758.CrossRefGoogle ScholarPubMed
Toseland, R.W., Blanchard, C.G., & McCallion, P. (1995). A problem solving intervention for caregivers of cancer patients. Social Science & Medicine, 40, 517–528.CrossRefGoogle ScholarPubMed
Wolff, J.L., Dy, S.M., Frick, K.D., et al. (2007). End-of-life care: Findings from a national survey of informal caregivers. Archives of Internal Medicine, 167, 40–46.CrossRefGoogle ScholarPubMed