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- Melin Johansson, Titti, et al.
(författare)
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The meaning of quality of life: narrations by patients with incurable cancer in palliative home care
- 2008
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 6:3, s. 231-238
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Tidskriftsartikel (refereegranskat)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.
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- Melin-Johansson, Christina
(författare)
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Patients' quality of life - Living with incurable cancer in palliative homecare
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- My clinical experience is that living in incurable cancer at the end of life is complex to patients and their families. Patients seem to have a rather good quality of life (QoL) but problems related to the progression of the illness constantly challenges and changes QoL. These changes seem to at some points improve or diminish QoL which are distressing to patients and their families. But what meaning do patients give QoL when illness progress? Further, my clinical experience is that QoL assessments are not integrated naturally in the daily care of dying patients and professionals do not ask patients how they apprehend their QoL in general. The overall aim was to explore how QoL is influenced and its importance for patients living with incurable cancer at the end of life, while being cared for at home with support from family caregivers and a palliative homecare team (PHT). The participants lived in the middle of Sweden, and the sample included patients (n=76) who were more or less confined to bed (ECOG PS), cared for by family caregivers (n=4). Mixed methods were used, mainly qualitative methods, analyzed by content analyses. Data collected with quantitative method was analyzed using mainly non-parametric methods. This thesis consists of four empirical papers (I-IV). Major findings illustrated how complex QoL in fact is and that it was essential to patients QoL to be a part of a daily and social life. The last weeks of life was not a calm transitory phase during which patients, family and professionals had time to adjust emotionally. Further, body and mind became more segregated than at any other time during the transition phase. This is strengthened by paper IV with patients in particular, which provided abundant information on different aspects related to the concept of QoL. Moreover, the quantitative study (I) showed that medical care and QoL could actually improve after patients had been designated to a PHT, despite their progressive disease. The social dimension of QoL was more obvious in the qualitative studies with patients (II and IV) and family caregivers (III), and not at all in the quantitative study (I). The existential dimension on the other hand was more evident in paper I and III than in paper II and IV. In addition, the physical and psychological dimensions appeared equally important in all of the papers. Findings also illustrated that some patients with incurable cancer did not regard their QoL as being as negative as one might expect. Positive factors that have been identified for potentially improving QoL was receiving optimal support by family caregivers and optimal symptom control, being able to stay at home, and maintaining as normal an everyday life as possible and being regarded as an autonomous individual.The findings in this thesis also point out the necessity for healthcare professionals in palliative care to seriously discuss what issues patients close to death and their families consider as important for providing an optimal QoL.
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