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The glimmering embers: Experiences of hope among cancer patients in palliative home care

Published online by Cambridge University Press:  25 February 2011

Louise Olsson ,
Gunnel Östlund ,
Peter Strang ,
Eva Jeppsson Grassman  and
Maria Friedrichsen
Louise Olsson*
Affiliation:
Department of Social and Welfare Studies, Faculty of Health Sciences, Campus Norrköping, Linköping University, Norrköping, Sweden
Gunnel Östlund
Affiliation:
Department of Social and Welfare Studies, Faculty of Health Sciences, Campus Norrköping, Linköping University, Norrköping, Sweden
Peter Strang
Affiliation:
Karolinska Institutet, FoUU, Stockholms sjukhem, Mariebergsgatan, Stockholm, Sweden
Eva Jeppsson Grassman
Affiliation:
Department of Social and Welfare Studies, Faculty of Health Sciences, Campus Norrköping, Linköping University, Norrköping, Sweden
Maria Friedrichsen
Affiliation:
Department of Social and Welfare Studies, Faculty of Health Sciences, Campus Norrköping, Linköping University, Norrköping, Sweden Palliative Education and Research Center Unit of Palliative Care, Vrinnevi Hospital, Norrköping, Sweden
*
Address correspondence and reprint requests to: Louise Olsson, Department of Social and Welfare Studies, Faculty of Health Sciences, Linköping University, Campus Norrköping, SE 601 74 Norrköping, Sweden. E-mail: louol@isv.liu.se
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Abstract

Objective:

The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.

Method:

Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.

Results:

The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope,” including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out.

Significance of results:

The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

Keywords

HopeMeaningGTCancerPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 1 , March 2011 , pp. 43 - 54
Copyright
Copyright © Cambridge University Press 2011

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References

REFERENCES

Back, A.L., Arnold, R.M. & Quill, T.E. (2003). Hope for the best but prepare for the worst. Annals of Internal Medicine, 138, 439–443.CrossRefGoogle ScholarPubMed
Baile, W.F. & Aaron, J. (2005). Patient-physician communication in oncology: Past, present and future. Current Opinion in Oncology, 17, 331–335.Google Scholar
Beck-Friis, B. & Strang, P. (1993). The organization of hospital-based home care for terminally ill cancer patients. The Motala model. Palliative Medicine, 7, 93–100.Google Scholar
Benzein, E. & Berg, A. (2003). The Swedish version of Herth Hope Index - an instrument for palliative care. Scandinavian Journal Caring Sciences, 17, 409–415.CrossRefGoogle ScholarPubMed
Benzien, E., Norberg, A. & Saveman, B.-I. (2001). Meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15, 117–226.Google Scholar
Blumer, H. (1973). A note on symbolic interactionism. American Sociological Review, 38, 797–798.CrossRefGoogle Scholar
Bruera, E., Kuehn, N., Miller, M., 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 Scholar
Chochinov, H.M. & Cann, B.J. (2005). Interventions to enhance the spiritual aspects of dying. Journal of Palliative Medicine, 8, 103–115.CrossRefGoogle ScholarPubMed
Dufault, K. & Martocchio, B.C. (1985). Hope: It's spheres and dimensions. Nursing Clinics of North America, 20, 379–391.Google Scholar
Duggleby, W. & Wright, K. (2004). Elderly palliative care cancer patients descriptions of hope-fostering strategies. International Journal of Palliative Nursing, 10, 352–359.Google Scholar
Duggleby, W.D., Degner, L., Williams, A., et al. (2007). Living with hope: Initial evaluation of a psychosocial hope intervention for older palliative home care patients. Journal of Pain and Symptom Management, 33, 247–257.CrossRefGoogle ScholarPubMed
Duggleby, W.D. & Wright, K. (2005). Transforming Hope: How elderly palliative patients live with hope. Clinical Journal of Nursing Research, 37, 70–84.Google ScholarPubMed
Farran, C.J., Wiken, C.S. & Popovich, J. M. (1992). Clinical assessment of hope. Issues in Mental Health, 13, 129–138.CrossRefGoogle ScholarPubMed
Fleming, K. (1997). The meaning of hope to palliative cancer patients. International Journal of Palliative Nursing, 3, 14–18.Google Scholar
Friedrichsen, M. & Milberg, A. (2006). Concerns about losing control when breaking bad news to terminally ill patients with cancer: Physicians' perspective. Journal of Palliative Medicine, 9, 673–682.Google Scholar
Friedrichsen, M., Strang, P. & Carlsson, M. (2000). Breaking bad news in the transition from curative to palliative cancer care-patients view of the doctor giving the information. Supportive Care in Cancer, 8, 472–478.Google Scholar
Glaser, B.G. & Strauss, A.L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine de Gruyter.Google Scholar
Heedman, P.A. & Strang, P. (2003). Pain and pain alleviation in hospital-based home care; demographic, biological and treatment factors. Support Cancer Care, 11, 35–40.CrossRefGoogle ScholarPubMed
Herth, K. (1992). Abbreviated instrument to measure hope: Development and psychometric evaluation. Journal of Advanced Nursing, 17, 1251–1259.CrossRefGoogle ScholarPubMed
Herth, K.A. & Cutcliffe, J.R. (2002). The concept of hope in nursing 3: Hope and palliative care nursing. British Journal of Nursing, 11, 977–983.CrossRefGoogle ScholarPubMed
Hirari, K., Miyashita, M., Morita, T., et al. (2006). Good death in Japanese cancer care: A qualitative study. Journal of Pain and Symptom Management, 31, 140–147.CrossRefGoogle Scholar
Jeon, Y.-H. (2004). The application of grounded theory and symbolic interactionism. Scandinavian Journal of Caring Sciences, 18, 249–256.CrossRefGoogle ScholarPubMed
Jeppsson Grassman, E. & Whitaker, A. (2007). End of life and dimensions of civil society: The church of Sweden in a new geography of death. Mortality, 12, 261–280.Google Scholar
Kim, D.S., Kim, D.S., Schwartz-Barcott, D., et al. (2006). The nature of hope in hospitalized chronically ill patients. International Journal of Nursing Studies, 43, 547–556.Google Scholar
Kimchi, J., Polivka, B. & Stevenson, J.S. (1991). Triangulation: Operational definitions. Nursing Research, 40, 364–366.CrossRefGoogle ScholarPubMed
Kirk, P., Kirk, I. & Kristjanson, L.J. (2004). What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. British Medical Journal, 328, 1343–1349.Google Scholar
Kylmä, J. & Vehvilainen-Julkunen, K. (1997). Hope in nursing research: A meta-analysis of the ontological and epistemological foundations of hope. Journal of Advanced Nursing, 25, 346–371.Google Scholar
Lundström, S.H. & Furst, C.J. (2006). The use of corticosteroids in Swedish palliative care. Acta Oncologica, 45, 430–437.Google Scholar
MacLeod, R. & Carter, H. (1999). Health professional's perception of hope: Understanding its significance in the care of people who are dying. Mortality, 4, 309–318.CrossRefGoogle Scholar
Morita, T., Akechi, T., Ikenaga, M., et al. (2004). Communication about the ending of anticancer treatment and transition to palliative care. Annals of Oncology, 15, 1551–1557.Google Scholar
Nekolaichuk, C.L. & Bruera, E. (1998). On the nature of hope in palliative care. Journal of palliative care, 14, 36–42.Google Scholar
Nekolaichuk, C.L. & Bruera, E. (2004). Assessing hope at the end of life: validation of an experience of hope scale in advanced cancer patients. Palliative and Supportive Care, 2, 243–253.Google Scholar
Parse, R.R. (1999). Hope: An International Human Becoming Perspective. Sudbury: Jones & Bartlett.Google Scholar
Patton, M.Q. (2002). Qualitative Research and Evaluation Methods, 3rd Ed. Thousands Oaks: Sage Publications Inc.Google Scholar
Richardson, L.A. & Jones, G.W. (2009). A review of the reliability and validity of the Edmonton Symptom Assessment System. Current Oncology, 16, 53–64.CrossRefGoogle ScholarPubMed
Salander, P., Bergenheim, T. & Henriksson, R. (1996). The creation of protection and hope in patients with malignant brain tumours. Social Science Medicine, 42, 985–996.Google Scholar
Sand, L., Strang, P. & Milberg, A. (2008). Dying patients' experiences of powerlessness and helplessness. Journal of Supportive Care in Cancer, 16, 853–862.CrossRefGoogle ScholarPubMed
Schreiber, R.S. & Stern, P.N. (2001). Using Grounded Theory in Nursing. New York: Springer.Google Scholar
Snyder, C.R., Lehman, K.A., Kluck, B., et al. (2006). Hope for rehabilitation and vice versa. Rehabilitation Psychology, 51, 89–112.Google Scholar
Socialstyrelsen (2007). Causes of Death. The National Board of Health and Welfare. 2009.Google Scholar
Socialstyrelsen (2008). Dödsorsaker 2006. Statistik, hälsa och sjukdomar 2008:6.Google Scholar
Stotland, E. (1969). The Psychology of Hope: An Integration of Experimental, Clinical and Social Approaches. San Francisco: Jossey-Bass.Google Scholar
Strauss, A. & Corbin, J. (1998). Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory. London: Sage.Google Scholar
Tulsky, J. (2005a). Beyond advanced directives: importance of communication skills at the end of life. Journal of the American Medical Association, 294, 359–365.Google Scholar
Tulsky, J.A. (2005b). Interventions to enhance communication among patients, providers and families. Journal of Palliative Medicine, 8, 95–102.Google Scholar
Watanabe, S., Nekolaichuk, C., Beaumont, C., et al. (2009). The Edmonton Symptom Assessment System - what do patients think? Support Care Cancer, 17, 675–683.Google Scholar
World Health Originaziation. (2008). WHO Definition of Palliative Care. http://www.who.int/cancer/palliative/definition/en/.Google Scholar