Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-26T22:47:59.146Z Has data issue: false hasContentIssue false
  • English
  • Français

The meaning of quality of life: Narrations by patients with incurable cancer in palliative home care

Published online by Cambridge University Press:  28 July 2008

Christina Melin-Johansson ,
Gunvor Ödling ,
Bertil Axelsson  and
Ella Danielson
Christina Melin-Johansson*
Affiliation:
The Sahlgrenska Academy at Göteborgs University, Institute of Health and Care Sciences, GöteborgSweden Department of Health Sciences, Mid Sweden University, Östersund, Sweden Department of General Surgery, Östersund Hospital, Östersund, Sweden
Gunvor Ödling
Affiliation:
Department of General Surgery, Östersund Hospital, Östersund, Sweden
Bertil Axelsson
Affiliation:
The Research and Development Unit, Jämtland County Council, Östersund, Sweden Institute of Radiation Sciences, Umeå University, Umeå, Sweden
Ella Danielson
Affiliation:
The Sahlgrenska Academy at Göteborgs University, Institute of Health and Care Sciences, GöteborgSweden Department of Health Sciences, Mid Sweden University, Östersund, Sweden Department of General Surgery, Östersund Hospital, Östersund, Sweden
*
Address correspondence and reprint requests to: Christina Melin-Johansson, Mid Sweden University, Department of Health Science, SE 831 25 Östersund, Sweden. E-mail: titti.melin-johansson@miun.se
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.

Methods:

To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004–2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.

Results:

Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients’ psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.

Significance of results:

This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients’ quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients’ entire life situation and increases quality of life.

Keywords

CancerHome carePalliative careQualitativeQuality of life
Type
Original Articles
Information
Palliative & Supportive Care , Volume 6 , Issue 3 , September 2008 , pp. 231 - 238
Copyright
Copyright © Cambridge University Press 2008

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

Barnett, M. (2001). Interviewing terminally ill people: Is it fair to take their time? Palliative Medicine, 15, 157–158..CrossRefGoogle ScholarPubMed
Baxter, L.A. (1991). Content analysis. In Studying Interpersonal Interaction, 2nd ed. Montgomery, B.M. & Duck, S. (eds.), pp. 239–254. London: The Guilford Press.Google Scholar
Blomberg, K. & Sahlberg-Blom, E. (2007). Closeness and distance: A way of handling difficult situations in daily care. Journal of Clinical Nursing, 16, 244–254.CrossRefGoogle ScholarPubMed
Boström, B., Sandh, M., Lundberg, D., et al. (2004). Cancer-related pain in palliative care: Patients perceptions of pain management. Journal of Advanced Nursing, 45, 410–419.CrossRefGoogle ScholarPubMed
Chochinov, H.M., Hack, T., Hassard, T., et al. (2005). Understanding the will to live in patients nearing death. Psychosomatics, 46, 7–10.CrossRefGoogle Scholar
Corner, J. (2002). Nurses’ experiences of cancer. European Journal of Cancer Care, 11, 193–199.CrossRefGoogle ScholarPubMed
de Araujo, M.M., da Silva, M.J., & Francisco, M.C. (2004). Nursing the dying: Essential elements in the care of terminally ill patients. International Nursing Review, 51, 149–158.CrossRefGoogle ScholarPubMed
ECOG (2006). ECOG Performance status. Retrieved from http://www.ecog.org/general/perf_stat.html.Google Scholar
Greisinger, A.J., Lorimor, R.J., Aday, L.A., et al. (1997). Terminally ill cancer patients. Their most important concerns. Cancer Practice, 5, 147–154.Google ScholarPubMed
Grossman, S.A., Dunbar, E.M., & Nesbit, S.A. (2006). Cancer pain management in the 21st century. Oncology, 20, 1333–1339.Google Scholar
Haas, B.K. (1999). Clarification and integration of similar quality of life concepts. Image Journal of Nursing Scholarship, 31, 215–220.CrossRefGoogle ScholarPubMed
Hampton, D.M., Hollis, D.E., Lloyd, D.A., et al. (2007). Spiritual needs of persons with advanced cancer. The American Journal of Hospice & Palliative Care, 24, 42–48.CrossRefGoogle ScholarPubMed
Hartgrink, H.H., Putter, H., Klein Kranenbarg, E., et al. (2002). Value of palliative resection in gastric cancer. The British Journal of Surgery, 89, 1438–1443.CrossRefGoogle ScholarPubMed
Hebert, R.S., Prigerson, H.G., Schultz, R., et al. (2006). Preparing caregivers for the death of a loved one: A theoretical framework and suggestions for future research. Journal of Palliative Medicine, 9, 1164–1171.CrossRefGoogle Scholar
Holloway, I. & Wheeler, S. (1995). Ethical issues in qualitative nursing research. Nursing Ethics, 2, 223–232.CrossRefGoogle ScholarPubMed
King, C.R., Haberman, M., Berry, D.L., et al. (1997). Quality of life and the cancer experience: The state-of-the-knowledge. Oncology Nursing Forum, 24, 27–41.Google ScholarPubMed
Lin, H.R. & Bauer-Wu, S.M. (2003). Psycho-spiritual well-being in patients with advanced cancer: An integrative review of the literature. Journal of Advanced Nursing, 44, 69–80.CrossRefGoogle ScholarPubMed
Lindqvist, O., Widmark, A., & Rasmussen, B.H. (2006). Reclaiming wellness—Living with bodily problems, as narrated by men with incurable prostate cancer. Cancer Nursing, 29, 327–337.CrossRefGoogle Scholar
Lo, R.S., Woo, J., Zhoc, K.C., et al. (2002). Quality of life of palliative care patients in the last two weeks of life. Journal of Pain and Symptom Management, 24, 388–397.CrossRefGoogle ScholarPubMed
Maliski, S.L., Helleman, M.V., & McCorkle, R. (2002). From “death sentence” to “good cancer”: Couples’ transformation of a prostate cancer diagnosis. Nursing Research, 51, 391–397.CrossRefGoogle Scholar
McClain-Jacobson, C., Rosenfeld, B., Kosinski, A., et al. (2004). Belief in afterlife, spiritual well-being and end-of-life despair in patients with advanced cancer. General Hospital Psychiatry, 26, 484–486.CrossRefGoogle ScholarPubMed
Miller, D.L., Manne, S.L., Taylor, K., et al. (1996). Psychological distress and well-being in incurable cancer: The effects of optimism and coping. Journal of Clinical Psychology in Medical Settings, 3, 115–130.CrossRefGoogle Scholar
Mishler, E. (1986). Research Interviewing: Context and Narrative. London: Harvard University Press.CrossRefGoogle Scholar
Moons, P., Budts, W., & De Geest, S. (2006). Critique on the conceptualisation of quality of life: A review and evaluation of different conceptual approaches. International Journal of Nursing Studies, 43, 891–901.CrossRefGoogle ScholarPubMed
National Board of Health and Welfare. (2007). Cancer i siffror (in Swedish). Retrieved from http://www.socialstyrelsen.se/NR/rdonlyres/20F814EA-945C-43A2-9D43-F1394A80694B/3483/20051255.pdf.Google Scholar
Osse, B.H., Vernooij-Dassen, M.J., Schade, E., et al. (2005). The problems experienced by patients with cancer and their needs for palliative care. Supportive Care in Cancer, 13, 722–732.CrossRefGoogle ScholarPubMed
Patton, M.Q. (2002). Qualitative Evaluation and Research Methods, 2nd ed. Newbury Park: Sage Publications, Inc.Google Scholar
Penrod, J. (2007). Living with uncertainty: Concept advancement. Journal of Advanced Nursing, 57, 658–667.CrossRefGoogle ScholarPubMed
Peters, L. & Sellick, K. (2006). Quality of life of cancer patients receiving inpatient and home-based palliative care. Journal of Advanced Nursing, 53, 524–533.CrossRefGoogle ScholarPubMed
Quinn, B. (2003). Exploring nurses’ experiences of supporting a cancer patient in their search for meaning. European Journal of Oncology Nursing, 7, 164–171.CrossRefGoogle ScholarPubMed
Rehnsfeldt, A. & Eriksson, K. (2004). The progression of suffering implies alleviated suffering. Scandinavian Journal of Caring Sciences, 18, 264–272.CrossRefGoogle ScholarPubMed
Rummans, T.A., Bostwick, J.M., Clark, M.M., et al. (2000). Maintaining quality of life at the end of life. Mayo Clinic Proceedings, 75, 1305–1310.CrossRefGoogle ScholarPubMed
Sand, L. & Strang, P. (2006). Existential loneliness in a palliative home care setting. Journal of Palliative Medicine, 9, 1376–1387.CrossRefGoogle Scholar
Skilbeck, J. & Payne, S. (2003). Emotional support and the role of Clinical Nurse Specialists in palliative care. Journal of Advanced Nursing, 43, 521–530.CrossRefGoogle ScholarPubMed
Soo, R.A., Wang, L.Z., Tham, L.S., et al. (2006). A multicentre randomised phase II study of carboplatin in combination with gemcitabine at standard rate or fixed dose rate infusion in patients with incurable stage non-small-cell lung cancer. Annals of Oncology, 17, 1128–1133.CrossRefGoogle ScholarPubMed
Spiroch, C.R., Walsh, D., Mazanec, P., et al. (2000). Ask the patient: A semi-structured interview study of quality of life in advanced cancer. American Journal of Hospice & Palliative Care, 17, 235–240.CrossRefGoogle ScholarPubMed
Strandberg, G., Norberg, A., & Jansson, L. (2001). Being overwhelmed by the feeling of having a home and family. One aspect of the meaning of being dependent on care: A study of one patient and two of his nurses. Journal of Advanced Nursing, 35, 717–727.CrossRefGoogle Scholar
Strang, S. & Strang, P. (2001). Spiritual thoughts, coping and ‘sense of coherence’ in brain tumour patients and their spouses. Palliative Medicine, 15, 127–134.CrossRefGoogle ScholarPubMed
Thomé, B., Dykes, A.K., Gunnars, B., et al. (2003a). The experiences of older people living with cancer. Cancer Nursing, 26, 85–96.CrossRefGoogle ScholarPubMed
Thomé, B., Dykes, A.K., & Hallberg, I.R. (2003b). Home care with regard to definition, care recipients, content and outcome: Systematic literature review. Journal of Clinical Nursing, 12, 860–872.CrossRefGoogle ScholarPubMed
Tishelman, C., Bernhardson, B.M., Blomberg, K., et al. (2004). Complexity in caring for patients with advanced cancer. Journal of Advanced Nursing, 45, 420–429.CrossRefGoogle ScholarPubMed
World Health Organization (2002). National Cancer Control Programmes: Policies and Managerial Guidelines. 2nd ed. Geneva: Office of publications, World Health Organization. Retrieved from http://www.who.int/cancer/media/en/408.pdf.Google Scholar