| 1. |
- Ahlner-Elmqvist, Marianne, et al.
(author)
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Characteristics and implications of attrition in health-related quality of life studies in palliative care
- 2009
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:5, s. 432-440
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Journal article (peer-reviewed)abstract
- In a longitudinal study of 297 palliative care patients, 280 patients were followed from inclusion to death. Characteristics and health-related quality of life (HRQL) of the participants and those who later dropped out were compared at inclusion, and 3 and 2 months before their death. At inclusion, the dropouts were older (P = 0.001), had reduced Karnofsky performance score (P < 0.001), received more help from the local authority (P = 0.004) and had reduced HRQL compared with patients who continued in the study and completed the next questionnaire. There were no differences in any of the HRQL parameters between participants and dropouts 3 months before death. Two months before death, differences in HRQL were found, but in favour of the dropouts. Data from patients close to death may be representative of a larger group of patients, whereas initial dropouts may lead to a positive bias of reported HRQL.
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| 2. |
- Andersson, B, et al.
(author)
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Being a hospice volunteer
- 2005
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In: Palliative Medicine. - 0269-2163 .- 1477-030X. ; 19, s. 602-609
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Journal article (peer-reviewed)
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| 3. |
- Andersson, Birgit, et al.
(author)
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Being a hospice volunteer
- 2005
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 19, s. 602-609
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Journal article (peer-reviewed)abstract
- The aim of this study was to obtain an understanding of what it means to be a hospice volunteer in a country without a tradition of hospice or palliative volunteer care services. Ten volunteers from three different hospices in Sweden were interviewed. Their narratives were interpreted with a phenomenological hermeneutic method. Three themes were disclosed: motives for becoming involved in hospices, encountering the hospice and encountering the patient. The interpretations disclose a need for the volunteer to be affirmed as a caring person and received in fellowship at the hospice. Positive encounters with a hospice are closely related to personal growth. Volunteers feel rejected if their need for meaning and for belonging to the hospice is not satisfied. This shows that hospices need to set goals in terms of volunteer support, particularly regarding existential issues following the encounter with the hospice and the patient. PMID: 16450877 [PubMed - indexed for MEDLINE]
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| 4. |
- Benkel, Inger, et al.
(author)
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Family and friends provide most social support for the bereaved
- 2009
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In: PALLIATIVE MEDICINE. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:2, s. 141-149
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Journal article (peer-reviewed)abstract
- Social support is important in the bereavement period. In this study, the respondents were family members and friends to a patient who had died at a palliative care unit. The aim was to explore wishes and needs for, access to and effects of social support in the bereaved. We found that the grieving person’s wishes for social support from their network and the network also provided most social support. The network consisted of the close family, the origin family, relatives and friend. Support from the professional staff was required when the network was dysfunctional or when the grieving person did not want to burden members of his/her own network. The need for social support from professional staff was most needed close to the death and some time after.
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| 5. |
- Benzein, Eva G, et al.
(author)
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The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care.
- 2005
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 19:3, s. 234-40
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Journal article (peer-reviewed)abstract
- Hope, hopelessness and fatigue are important experiences for patients and family members in palliative care. The aim of the study was to describe the level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Eighty-five participants completed the Herth Hope Index, Beck's Hopelessness Scale and rated their level of fatigue from none to severe. The level of hope proved to be significantly lower among the family members than among the patients. For the family members, correlations were found between hope and age (-0.358*), fatigue and hope (-0.439*), hopelessness and age (0.484**), age and fatigue (0.403**) and between hope and hopelessness (-0.723**). For the patients, correlations were found between age and hopelessness (0.555**) and between hopelessness and hope (-0.580**). Efforts to increase the experience of hope and decrease hopelessness and fatigue must include not only the patient but also the family members. (* =P <0.5, ** =P <0.01)
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| 6. |
- Benzein, Eva, et al.
(author)
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The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care
- 2005
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In: Palliative Medicine. - 0269-2163 .- 1477-030X. ; 19:3, s. 234-240
-
Journal article (peer-reviewed)abstract
- Hope, hopelessness and fatigue are important experiences for patients and family members in palliative care. The aim of the study was to describe the level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Eighty-five participants completed the Herth Hope Index, Beck's Hopelessness Scale and rated their level of fatigue from none to severe. The level of hope proved to be significantly lower among the family members than among the patients. For the family members, correlations were found between hope and age (–0.358*), fatigue and hope (–0.439*), hopelessness and age (0.484**), age and fatigue (0.403**) and between hope and hopelessness (–0.723**). For the patients, correlations were found between age and hopelessness (0.555**) and between hopelessness and hope (–0.580**). Efforts to increase the experience of hope and decrease hopelessness and fatigue must include not only the patient but also the family members. (*=P<0.5, **=P<0.01).
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| 7. |
- Cartwright, Colleen, et al.
(author)
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Physician discussions with terminally ill patients: a cross-national comparison
- 2007
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In: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 21:4, s. 295-303
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Journal article (peer-reviewed)abstract
- A major issue in the care of terminally ill patients is communication and information provision. This paper reports the extent to which physicians in Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland discuss topics relevant to end of life care with terminally ill patients and their relatives (without first informing the patient), and possible associations between physician-specific characteristics and such discussions. Response rates to the postal survey ranged from 39% to 68% (n = 10139). Physicians in most of the countries except Italy in principle, always' discuss issues related to terminal illness with their patients but not with patients' relatives without first informing the patient, unless the relatives ask. Cross-national differences remained strong after controlling for physician characteristics. The majority of physicians appeared to support the principle of patient-centred care to terminally ill patients, consistent with palliative care philosophy and with the law and/or professional guidelines in most of the countries studied.
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| 8. |
- Cohen, J., et al.
(author)
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Population-based study of dying in hospital in six European countries
- 2008
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 22:6, s. 702-710
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Journal article (peer-reviewed)abstract
- This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.
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| 9. |
- Hauksdottir, A., et al.
(author)
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Towards better measurements in bereavement research: order of questions and assessed psychological morbidity
- 2006
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In: Palliat Med. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 20:1, s. 11-6
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Journal article (peer-reviewed)abstract
- The aim of this study was to determine if the order of questions in a study on men who have lost a wife in cancer affects self-assessed measures of psychological morbidity. Data were collected from 76 men who had lost a wife owing to cancer in the breast, ovary or colon in 1999. They were randomly allocated to one of two questionnaires with identical content but varying design. One version began with questions about the wife's disease and ended with the respondent's current wellbeing (morbidity-last group). The other version had a reversed order (morbidity-first group). Results showed that the design of the questionnaire affected self-assessed psychological morbidity; all relative risks for these measures were above 1.0 in the morbidity-last group. The highest relative risk was obtained for anxiety (as measured by HADS), 3.4 (0.8-15.0), and depression (as measured by a visual-digital scale), 3.1 (1.2-8.5). Psychological morbidity is assessed as higher when questions appear in the end, rather than the beginning, of a bereavement-related questionnaire. In order to avoid a detrimental bias in a study on bereavement, psychological morbidity is probably best measured first in such a questionnaire.
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| 10. |
- Hunt, H., et al.
(author)
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When death appears best for the child with severe malignancy: a nationwide parental follow-up
- 2006
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 20:6, s. 567-77
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Journal article (peer-reviewed)abstract
- BACKGROUND: Loss of a child to malignancy is associated with long-term morbidity among surviving parents. This study aims to identify particular sources of stress among parents of children with severe malignancy. METHODS: We attempted to contact all parents in Sweden who lost a child to cancer between 1992 and 1997. Some 449 parents answered an anonymous questionnaire, including a question regarding whether they ever thought that death would be best for the child with severe malignancy. RESULTS: Mothers whose children were unable to communicate during their last week of life were more likely to think that death would be best for the child (relative risk (RR): 1.6; 95% confidence interval (CI): 1.2-2.1). Fathers whose children faced six years or more with malignancy were more likely to think that death would be best for their child (RR: 2.1; 95% CI: 1.3-3.5). CONCLUSIONS: The inability of the child with severe malignancy to communicate increases the likelihood of mothers thinking that death would be best for the child, while longer duration of the child's illness increases the occurrence of this thought among fathers.
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