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Caregivers' perceptions about terminally ill family members' quality of life.
Göteborgs universitet.ORCID iD: 0000-0001-9623-5813
2007 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 16, no 4, p. 338-45Article in journal (Refereed) Published
Abstract [en]

Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.

Place, publisher, year, edition, pages
2007. Vol. 16, no 4, p. 338-45
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-7404DOI: 10.1111/j.1365-2354.2006.00754.xPubMedID: 17587358OAI: oai:DiVA.org:esh-7404DiVA, id: diva2:1305382
Available from: 2019-04-16 Created: 2019-04-16 Last updated: 2019-04-17Bibliographically approved
In thesis
1. Patients' quality of life: Living with incurable cancer in palliative homecare
Open this publication in new window or tab >>Patients' quality of life: Living with incurable cancer in palliative homecare
2007 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Göteborg: Göteborg University, 2007. p. 74
Keywords
Advanced cancer, Assessment of quality of life a the end of life, AQEL, existential, hospital based palliative care, mixed methods, neoplasm, nursing, palliative care, quality of life, social life, support.
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7438 (URN)9789162872854 (ISBN)
Available from: 2019-04-17 Created: 2019-04-17 Last updated: 2019-04-17Bibliographically approved

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