Hostname: page-component-8448b6f56d-c4f8m Total loading time: 0 Render date: 2024-04-19T22:42:12.877Z Has data issue: false hasContentIssue false

The significance of fatigue in relatives of palliative patients

Published online by Cambridge University Press:  23 March 2010

Maria E. Carlsson*
Affiliation:
Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden
*
Address correspondence and reprint requests to: Maria E. Carlsson, Department of Public Health and Caring Sciences, Uppsala University, Box 564 751 22 Uppsala, Sweden. E-mail: maria.carlsson@pubcare.uu.se

Abstract

Objective:

The aim of this study was to explore the significance of fatigue among relatives of palliative patients.

Method:

This pilot study has a descriptive and cross-sectional design and is the report of four open-ended questions focusing on the relatives' experiences of fatigue. The study population consisted of relatives of patients who were cared for in palliative care settings either at home or in an institution in Uppsala County during a specific day.

Results:

The relatives were very tired and identified worries, uncertainty, the patient's suffering, and many demands as the causes for the fatigue. The most obvious consequences of the tiredness were a lack of motivation, feelings of insufficiency and apathy, and putting their own interests aside. Many relatives expressed that having the company of close family members, taking exercise and spending time outdoors gave them strength to carry on. The health care system could make the situation easier for relatives of patients in palliative care by providing good care for the patient, and psychosocial support and respite care for the relatives.

Significance of results:

The result of the pilot study is only preliminary, but it showed that relatives caring for patients in a late palliative phase suffer from great fatigue and require more attention, both scientifically and in the clinical settings.

Type
Original Articles
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

Ahlberg, K., Ekman, T., Wallgren, A., et al. (2005). Fatigue, psychological distress, coping resources and functional status during radiotherapy for patients with uterine cancer. Oncology Nursing Forum, 32, 633640.CrossRefGoogle ScholarPubMed
Ahmadi, F. (2006). Culture, religion and spiruality in coping. The example of cancer patients in Sweden. Acta Universitatis Upsaliensis. Studie Sociologica Upsaliensia, 53.Google Scholar
Andershed, B. (2006). Relatives in end-of-life care-Part 1: A systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15, 11581169.CrossRefGoogle ScholarPubMed
Axelsson, B. & Sjödén, P.-O. (1998). Quality of life of cancer patients and their spouses in palliative home care. Palliative Medicine, 12, 2939.CrossRefGoogle ScholarPubMed
Berg, B. (2004). Qualitative research methods for social sciences. 5th ed.Boston: Pearson Education.Google Scholar
Carlsson, M. & Rollison, B. (2003). A comparison of patients dying at home and patients dying at a hospice: Sociodemograpic factors and caregivers' experiences. Palliative & Supportive Care, 1, 3339.CrossRefGoogle Scholar
Carlsson, M. & Nilsson, I. (2007). Bereaved spouses' adjustment after the patients' death in palliative care. Palliative and Supportive Care, 5, 397404.CrossRefGoogle Scholar
Carlsson, M. (2009). Fatigue in relatives of palliative patients. Palliative & Supportive Care, 7, 207211.CrossRefGoogle ScholarPubMed
Chentsova-Dutton, Y., Shucter, S., Hutchin, S., et al. (2002). Depression and grief reactions in hospice caregivers: From pre-death to 1 year afterwards. Journal of Affective Disorders, 69, 5360.CrossRefGoogle ScholarPubMed
Fakhoury, W. & Mc Carthy, M. (1998). Can the experience of caring at home affect carers' retrospective evaluation of community care services? Scandinavian Journal of Caring Sciences, 12, 179185.CrossRefGoogle ScholarPubMed
Fürst, C.J. & Åhsberg, E. (2001). Dimensions of fatigue during radiotherapy. An application of the Multidimensional Fatigue Inventory. Supportive Care in Cancer, 9, 355360.Google ScholarPubMed
Glaus, A. (1998). Fatigue and cachexia in cancer patients. Supportive Care in Cancer, 6, 7778.CrossRefGoogle ScholarPubMed
Gomas, J. (1993). Palliative care at home: A reality or mission impossible? Palliative Medicine, 7 (Suppl 3), 4559.Google Scholar
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nursing Education Today, 24, 105112.Google Scholar
Grov., E.Fosså, S., Sorebo, O., et al. (2006). Primary caregivers of cancer patients in the palliative phase: A path analysis of variables influencing their burden. Social Sciences and Medicine, 63, 24292439.CrossRefGoogle ScholarPubMed
Gyllenhammar, E., Thoren-Todoulos, E,. Strang, P., et al. (2003). Predictive factors for home deaths among cancer patients in Swedish palliative home care. Supportive Care in Cancer, 11, 560567.CrossRefGoogle ScholarPubMed
Jensen, S. & Given, B. (1993). Fatigue affecting family caregivers of cancer patients. Supportive Care in Cancer, 1, 321325.CrossRefGoogle ScholarPubMed
Krippendorff, K. (2004). Content analysis. In An Introduction to its Methodology. 2nd ed.London: Sage.Google Scholar
Laizner, A., Yost, L., Barg, F., et al. (1993). Needs of family caregivers of persons with cancer: A review. Seminars in Oncology Nursing, 9, 114120.CrossRefGoogle ScholarPubMed
Milberg, A., Strang, P. & Jakobsson, M. (2004). Next of kin's experience of powerlessness and helplessness in palliative home care. Supportive Care in Cancer, 12, 120128.Google Scholar
Richardson, A. (1998). Measuring fatigue in patients with cancer. Supportive Care in Cancer, 6, 94100.CrossRefGoogle ScholarPubMed
Rollison, B. & Carlsson, M. (2002). Evaluation of advanced home care (AHC). The next-of-kin's experiences. European Journal of Oncology Nursing, 6, 100106.CrossRefGoogle ScholarPubMed
Schwarz, R., Krauss, O. & Hinz, A. (2003). Fatigue in the general population. Onkologie, 26, 140144.Google ScholarPubMed
Sjövall, K., Attner, B., Lithman, T., et al. (2009). Influence on the health of the partner affected by tumor disease in Sweden. Journal of Clinical Oncology, 27, 47814786.CrossRefGoogle ScholarPubMed
Socialstyrelsen. (1999). “Nöjda och trötta” Personalens och de anhörigas upplevelser av hemsjukvård. (Content But Tired. The Staffs' and Relatives' Experiences of Home Care.) Stockholm: Socialstyrelsen.Google Scholar
Strang, V., Koop, P. & Peden, J. (2002). The experience of respite during home-based family caregiving for persons with advanced cancer. Journal of Palliative Care, 18, 97104.CrossRefGoogle ScholarPubMed
Swedish Government Stöd till personer som vårdar eller stödjer närstående. (Support to persons who care for or support relatives). Prop. 2008/09:82.http://regeringen.se/sb/d/10884/a/121524.Google Scholar
Uddenberg, N. (1995). Det Stora Sammanhanget. Moderna Svenskars Syn På Människans Plats i Naturen (The Big Picture: Modern Swedes' View of Humans' Place in Nature). Lund: Nya Doxa.Google Scholar
Watt, T., Groenvold, M., Bjorner, J.B., et al. (2000). Fatigue in the Danish general population. Influence of sociodemographic factors and disease. Journal of Epidemiology and Community Health, 54, 827833.CrossRefGoogle ScholarPubMed
Wennman-Larsen, A. & Tishelman, C. (2002). Advanced home care for cancer patients at the end of life: A qualitative study of hopes and expectations of family caregivers. Scandinavian Journal of Caring Sciences, 16, 240247.CrossRefGoogle ScholarPubMed