| 1. |
- Melcher, Ulrica, et al.
(författare)
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Teenagers with a Dying Parent : A Qualitative Retrospective Study
- 2014
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Ingår i: Abstracts of the 8th World Research Congress of the European Association for Palliative Care (EAPC) Lleida, Spain 5–7 June 2014. - : SAGE Publications. ; , s. 797-797
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Beeing a teenager living with a dying parent is well known to be distressing with a significant impact on teenagers psychological well-beeing. To support teenagers and prevent long-term psychological consequences we need to find out more about teenagers experiences. Aim: The aim was to explore teenagers experiences from living with a severely ill dying parent. Method: Repeated qualitative interviews were conducted with ten teenagers that had lost a parent within a year. The parent had received specialist palliative care by the time of death. Qualitative content analyses were used for analyses. Results: Preliminary results show that teenagers carry a great responsibility in the care of the sick parent and the healthy parent, siblings and general ordinary family matters. While carrying this responsibility they experience loneliness and try to adjust to the situation in different ways by being loyal to their parents. In their process to understand that the parent is dying they prepare by observing and trying to make sense of the illness symptoms they notice. Feeling trust to and support from the parents makes them feel more involved and less lonely and responsible. Conclusion: This study contributed with knowledge about great feelings of responsibility and loneliness among teenagers who has a dying parent. Healthcare professionals in palliative care could work to acknowledge and try to support the teenagers to feel involved, less lonely and less burdened by responsibility. An important aspect is also to support the healthy parent enough and thereby reduce the responsibility from the teenager.
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| 2. |
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| 3. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Characteristics and implications of attrition in health-related quality of life studies in palliative care
- 2009
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:5, s. 432-440
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Tidskriftsartikel (refereegranskat)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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| 4. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Place of death : hospital-based advanced home care versus conventional care - A prospective study in palliative cancer care
- 2004
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Ingår i: Palliative Medicine. - : Arnold Schönberg Center. - 0269-2163 .- 1477-030X. ; 18:7, s. 585-593
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this prospective nonrandomized study was to evaluate time spent at home, place of death and differences in sociodemographic and medical characteristics of patients, with cancer in palliative stage, receiving either hospital-based advanced home care (AHC), including 24-hour service by a multidisciplinary palliative care team or conventional hospital care (CC). Recruitment to the AHC group and to the study was a two-step procedure. The patients were assigned to either hospital-based AHC or CC according to their preferences. Following this, the patients were asked to participate in the study. Patients were eligible for the study if they had malignant disease, were older than 18 years and had a survival expectancy of 2-12 months. A total of 297 patients entered the study and 280 died during the study period of two and a half years, 117 in the AHC group and 163 in the CC group. Significantly more patients died at home in the AHC group (45%) compared with the CC group (10%). Preference for and referral to hospital-based AHC were not related to sociodemographic or medical characteristics. However, death at home was associated with living together with someone. Advanced hospital-based home care targeting seriously ill cancer patients with a wish to remain at home enable a substantial number of patients to die in the place they desire.
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| 5. |
- Albinsson, L, et al.
(författare)
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Differences in supporting families of dementia patients and cancer patients: a palliative perspective
- 2003
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Ingår i: Palliative medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 17:4, s. 359-367
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate what staff working in close contact with patients perceive as good support of families in dementia care as compared with support of families in palliative cancer care. Design and subjects: During four national courses on dementia care and one national course on palliative cancer care, 316 and 121 participants, respectively, responded to an open-ended question: In your experience, what are the two most important measures for supporting families of dementia patients/severely ill cancer patients? Sixty-one items were coded and allocated into 10 main categories and analysed with both a qualitative and quantitative approach. Results: The dominant items for both staff groups were to listen to the family member and to give information, although listening was significantly more often stressed in the palliative group (PB = 0.001). The staff in dementia care stressed significantly more the importance to form support groups for families (PB = 0.001), to offer respite care (PB = 0.001), to educate families (PB = 0.001) and to try to relieve the family's feeling of guilt (PB = 0.001). In the palliative staff group, the importance of being available (PB = 0.05), creating a sense of security (PB = 0.001) and supporting the family after the patients death (PB = 0.01) were significantly more focused on. Discussion: The respondents from the dementia staff group and from the palliative cancer group stressed the importance of supporting family members. However, the type of support needed partly differs because of the different trajectories in dementia compared with severe cancer phases.
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| 6. |
- Andersson, B, et al.
(författare)
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Being a hospice volunteer
- 2005
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Ingår i: Palliative Medicine. - 0269-2163 .- 1477-030X. ; 19, s. 602-609
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Tidskriftsartikel (refereegranskat)
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| 7. |
- Andersson, Birgit, et al.
(författare)
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Being a hospice volunteer
- 2005
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 19, s. 602-609
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Tidskriftsartikel (refereegranskat)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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| 8. |
- Beck, Ingela, et al.
(författare)
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Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden
- 2016
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Patient-reported outcome measurements are important for measuring changes in patients’ health over time, evaluating the quality of care given, and improving the quality of care service. The Integrated Palliative care Outcome Scale (IPOS) is one such measure, capturing clinically important physical, psychological, social, and existential aspects of patients’ palliative care needs. When patients are unable to complete the IPOS questionnaire themselves with or without assistance, a staff version is also available. Aim: To translate and culturally adapt the IPOS Patient and Staff versions for use in the Swedish context. Method: The process comprised forward and backward translations, cultural adaptation, and expert group reviews. To validate the resulting Swedish version of IPOS, cognitive interviews were conducted with 13 patients and 15 staff from various care contexts. Preliminary results: The Swedish expert group changed some words and grammar due to minor discrepancies in the back translation process. The participants in the cognitive interviews responded positively overall to the questionnaire. Deteriorating health and not having Swedish as the native language did not cause problems in completing the questionnaire. After the first round of cognitive interviews, problematic questions and answer options were rephrased, and redundant text was deleted. Conclusion: The Swedish IPOS (Patient and Staff versions) has been validated linguistically and culturally, and is now available for clinical use. The next final step in the validation process will be to test the psychometric performance of the Swedish questionnaires.
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| 9. |
- Benkel, Inger, et al.
(författare)
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Family and friends provide most social support for the bereaved
- 2009
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Ingår i: PALLIATIVE MEDICINE. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:2, s. 141-149
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Tidskriftsartikel (refereegranskat)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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| 10. |
- Benzein, Eva G, et al.
(författare)
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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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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 19:3, s. 234-40
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Tidskriftsartikel (refereegranskat)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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