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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: [email protected]
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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

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