| 1. |
- Henoch, Ingela, et al.
(författare)
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The Assessment of Quality of life at the End of Life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care.
- 2010
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Ingår i: Quality of life research. - : Springer Science and Business Media LLC. - 1573-2649 .- 0962-9343. ; 19:5, s. 739-750
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim of the study was to further validate the Assessment of Quality of life at the End of Life (AQEL) questionnaire, to explore whether conceptually consistent scales could be confirmed and how the instrument relates to other widely used and validated HRQL instruments. METHODS: A total of 106 patients with lung cancer in palliative care completed the 20-item AQEL, the EORTC QLQ-C30, Hospital Anxiety and Depression Scale (HADS), Sense of Coherence (SOC-13) and Social Support Survey (SSS). Construct validity of the AQEL was tested by multitrait scaling, principal components analysis, inter-scale correlations and known-groups comparisons. RESULTS: Five scales were supported by multitrait scaling: Basic function, Activity, Emotional function, Cognitive function and Existential needs, with satisfactory (>.7) internal consistency for the latter three and intermediate (>.5) for the remaining two. A Social support scale was supported by principal components analysis, but exhibited a low internal consistency. Items on health care issues and physical symptoms worked best as individual items. Expected correlations with other instruments were found for all scales. Activity was sensitive to different levels of functioning as defined by performance status. CONCLUSIONS: This study provided some evidence for the validity of the AQEL and its feasibility in patients with cancer in palliative care.
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| 2. |
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| 3. |
- Melin-Johansson, Christina, et al.
(författare)
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Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team
- 2010
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 19:2, s. 243-250
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The aims of this study were to describe and compare quality of life (QOL) before and after designation to a palliative homecare team (PHT) in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global QOL. We measured patients� QOL one week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (AQEL). Of 163 eligible patient 63 participated without attrition. Patients� QOL improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (p=.009), nausea (p=.008), anxiety (p=.007), getting hold of staff (p=.000), received care (p=.003) and global QOL (p=.023). Depression/low in mood (r=.55) and meaningfulness (r=.70) associated to global QOL. Furthermore, pain (p=.028) and meaningfulness (p=.028) predicted global QOL. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global QOL.
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| 4. |
- Melin Johansson, Titti, et al.
(författare)
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Caregivers' perceptions about terminally ill family members' quality of life
- 2007
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 16:4, s. 338-345
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- 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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| 6. |
- Udo, Camilla, et al.
(författare)
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Surgical nurses’ attitudes towards caring for patients dying of cancer : a pilot study of an educational intervention on existential issues
- 2014
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 23:4, s. 426-440
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Tidskriftsartikel (refereegranskat)abstract
- This is a randomised controlled pilot study using a mixed methods design. The overall aim was to test an educational intervention on existential issues and to describe surgical nurses' perceived attitudes towards caring for patients dying of cancer. Specific aims were to examine whether the educational intervention consisting of lectures and reflective discussions, affects nurses' perceived confidence in communication and to explore nurses' experiences and reflections on existential issues after participating in the intervention. Forty-two nurses from three surgical wards at one hospital were randomly assigned to an intervention or control group. Nurses in both groups completed a questionnaire at equivalent time intervals: at baseline before the educational intervention, directly after the intervention, and 3 and 6 months later. Eleven face-to-face interviews were conducted with nurses directly after the intervention and 6 months later. Significant short-term and long-term changes were reported. Main results concerned the significant long-term effects regarding nurses' increased confidence and decreased powerlessness in communication, and their increased feelings of value when caring for a dying patient. In addition, nurses described enhanced awareness and increased reflection. Results indicate that an understanding of the patient's situation, derived from enhanced awareness and increased reflection, precedes changes in attitudes towards communication.
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