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Patients' quality of life: Living with incurable cancer in palliative homecare
Göteborgs universitet.ORCID iD: 0000-0001-9623-5813
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 [en]
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: urn:nbn:se:esh:diva-7438Libris ID: 10543858ISBN: 9789162872854 (print)OAI: oai:DiVA.org:esh-7438DiVA, id: diva2:1305536
Available from: 2019-04-17 Created: 2019-04-17 Last updated: 2019-04-17Bibliographically approved
List of papers
1. Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team.
Open this publication in new window or tab >>Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team.
2010 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, no 2, p. 243-50Article in journal (Refereed) Published
Abstract [en]

The aims of this study were to describe and compare quality of life before and after designation to a palliative homecare team in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global quality of life. We measured patients' quality of life 1 week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (Axelsson & Sjödén 1999). Of 163 eligible patients 63 participated without attrition. Patients' quality of life improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (P = 0.009), nausea (P = 0.008), anxiety (P = 0.007), getting hold of staff (P = 0.000), received care (P = 0.003) and global quality of life (P = 0.023). Depression/low in mood (r = 0.55) and meaningfulness (r = 0.70) associated to global quality of life. Furthermore, pain (P = 0.028) and meaningfulness (P = 0.028) predicted global quality of life. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global quality of life.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7406 (URN)10.1111/j.1365-2354.2008.01017.x (DOI)19686275 (PubMedID)
Available from: 2019-04-16 Created: 2019-04-16 Last updated: 2019-04-17Bibliographically approved
2. Living with incurable cancer at the end of life--patients' perceptions on quality of life.
Open this publication in new window or tab >>Living with incurable cancer at the end of life--patients' perceptions on quality of life.
2006 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 29, no 5, p. 391-9Article in journal (Refereed) Published
Abstract [en]

This study describes incurably ill cancer patients' perceptions of the quality of life at the end of life. Purposeful sampling was used to get as comprehensive descriptions as possible about quality of life. Five patients participated in repeated focus groups. Content analysis showed that the patients emphasized what they could perform and enjoy in daily life, not their shortcomings. Five themes were developed: "valuing ordinariness in life," "maintaining a positive life," "alleviated suffering," "significant relations," and "managing life when ill." The themes describe that the patients could participate in daily and social life despite cancer. Relation with family and palliative team deepened during the progress of illness in such that a resonance developed in communication. Other important findings were that patients' memories helped them to maintain a positive life and that the patients used individual strategies to relieve pain by emotional and physical distractions. For the patients, managing life as ill meant taking actions with creative thinking in solving problems as a way to cope and achieve quality of life. These positive findings from the focus groups have led to continued research regarding how patients with incurable cancer perceive quality of life.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7403 (URN)17006113 (PubMedID)
Available from: 2019-04-16 Created: 2019-04-16 Last updated: 2019-04-17Bibliographically approved
3. Caregivers' perceptions about terminally ill family members' quality of life.
Open this publication in new window or tab >>Caregivers' perceptions about terminally ill family members' quality of life.
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.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7404 (URN)10.1111/j.1365-2354.2006.00754.x (DOI)17587358 (PubMedID)
Available from: 2019-04-16 Created: 2019-04-16 Last updated: 2019-04-17Bibliographically approved
4. The meaning of quality of life: narrations by patients with incurable cancer in palliative home care.
Open this publication in new window or tab >>The meaning of quality of life: narrations by patients with incurable cancer in palliative home care.
2008 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 6, no 3, p. 231-8Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7405 (URN)10.1017/S1478951508000370 (DOI)18662416 (PubMedID)
Available from: 2019-04-16 Created: 2019-04-16 Last updated: 2019-04-17Bibliographically approved

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