| 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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| 11. |
- Benzein, Eva, 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. - 0269-2163 .- 1477-030X. ; 19:3, s. 234-240
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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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| 12. |
- Brännström, Margareta, et al.
(författare)
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Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study
- 2016
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 30:1, s. 54-63
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Tidskriftsartikel (refereegranskat)abstract
- Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes. Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services. Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden. Results: Shortness of breath (estimate=-2.46; 95% confidence interval=-4.43 to -0.49) and nausea (estimate=-1.83; 95% confidence interval=-3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate=-0.47; 95% confidence interval=-0.85 to -0.08). Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.
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| 13. |
- Böling, Susanna, et al.
(författare)
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Rethinking Consultation - Investigating the Perceived Work Models of a Palliative Consultation Team
- 2018
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Ingår i: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract PO38. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Previous research has shown that palliative consultation in hospital contexts sometimes face multifaceted challenges. Possibly creat- ing barriers between the consulting team and patients in need of palliative care. Hence, there is a need to consider how we implement and perform palliative consultation to inform future initiatives. This study is part of an ongoing project with the aim to analyse the discourse around implement- ing palliative care in a hospital context. Aim: The aim of this study was to identify and analyse various work models applied in a hospital context by a palliative consultation team. Method: Repeated focus group discussions with a palliative consultation team and its managers. A total of six focus group discussions were held from April 2016 to June 2017. The focus groups were audio recorded and transcribed verbatim. The data was read and analysed; identifying and categorising different work models. Result: According to what was expressed in the focus groups there were variations in how the consultation team operated in different hospital units and wards. Consulting as a team, consisting of a nurse, social worker and physician, was emphasised. One of the significant features was that they visited several wards on a weekly basis without receiving formal referrals beforehand. Although varying in form, the visits shared the function of being a forum for the wards to raise questions regarding palliative care relating to specific patients with palliative needs. Furthermore, during the introduction of consultation in some of the wards, the consultation team chose to designate time where a nurse from the team were present in the ward and among other things; identified patients with palliative care needs together with the ward staff and paved the way for the weekly palliative consultation.
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| 14. |
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| 15. |
- Carling Elofsson, Linnea, et al.
(författare)
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Meanings of being old and living with chronic obstructive pulmonary disease
- 2004
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Ingår i: PALLIATIVE MEDICINE. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 18:7, s. 611-618
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to achieve a deeper understanding of the meaning of the lived experiences of elderly persons who are severely ill with chronic obstructive pulmonary disease (COPD) and in need of everyday care. Narratives from dialogues with six persons were interpreted using phenomenological–hermeneutic methodology. The structural analyses showed severe problems in daily life due to old age with a decaying body and dialectic experiences of resignation–contentedness, loneliness–connectedness, and being homeless–being at home. The interpreted whole reveals that life, suffering and comfort must be understood as an interlaced experience where ageing is just as important as the experience of illness. These elderly people's concerns and problems due to old age, a decaying body and being severely ill with COPD call for palliative and comfort care and thus challenge all professionals involved in their care.
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| 16. |
- Cartwright, Colleen, et al.
(författare)
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Physician discussions with terminally ill patients: a cross-national comparison
- 2007
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 21:4, s. 295-303
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Tidskriftsartikel (refereegranskat)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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| 17. |
- Cohen, J., et al.
(författare)
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Population-based study of dying in hospital in six European countries
- 2008
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 22:6, s. 702-710
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Tidskriftsartikel (refereegranskat)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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| 18. |
- Currow, David C., et al.
(författare)
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Sleeping-related distress in a palliative care population : A national, prospective, consecutive cohort
- 2021
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 35:9, s. 1663-1670
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Tidskriftsartikel (refereegranskat)abstract
- Background: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations. Aim: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue. Design: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS). Setting/Participants: People (n = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services (n = 152) 2013–2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care). Results: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40–60). Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99–10.8). Conclusions: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.
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| 19. |
- De Vleminck, A, et al.
(författare)
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Engagement of specialized palliative care services with the general public: A population-level survey in three European countries
- 2022
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Ingår i: Palliative medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 36:5, s. 878-888
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Tidskriftsartikel (refereegranskat)abstract
- There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) ( n = 50), Sweden ( n = 129) and the UK ( n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services’ dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.
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| 20. |
- Diffin, Janet, et al.
(författare)
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Person-Centred Care: Principles and Practice Barriers (oral presentation). In: Enabling Person-Centred Care for Palliative Care Patients and Their Informal Carers: Definitions, Models of Practice and Implementation; invited session (Gunn Grande & Gail Ewing, moderators)
- 2019
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Ingår i: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract PS16. Palliative Medicine, vol. 33, issue 1. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Aim: Barriers to the implementation of person-centred care within pal- liative care practice have been identified for patients and family carers. A shared understanding of (i) the principles of person-centred care, and (ii) how to successfully implement person-centred interventions is there- fore required. This paper aims to to define the key principles of person- centred care and identify barriers and enablers to implementation success within palliative care practice. Methods: This paper brings together the international evidence on person-centred care, and reviews the enablers and barriers to imple- mentation within palliative care practice. It will draw on the experi- ences of the development of person-centred care practice and the implementation of the Carer Support Needs Assessment Tool inter- vention, a person-centred process of assessment and support for fam- ily carers. Results: Person-centred care is characterised by practitioners initiat- ing, working through and safeguarding a partnership ‘with’ patients and/or family carers. As such, a change in practice from a practi- tioner-led approach, to one which is led by a patient/family carer is often required. Implementation barriers at the individual level include viewing a person-centred approach as an ‘add-on’ to existing practice, and at the organisational level include a lack of managerial support and protected time. Training is therefore required for the individual practitioner to help them integrate this approach into their everyday practice, and for the organisation to ensure adequate prep- aration, and the establishment of a strategy to support implementa- tion. A team of practitioners within the organisation is needed to drive this implementation planning and ensure organisational readi- ness for change. Conclusions: The evidence presented provides vital lessons learned for implementation of person-centred interventions for patients or family carers within palliative care practice.
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| 21. |
- Edenbrandt, Carl-Magnus
(författare)
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From Sweden
- 2003
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Ingår i: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 17:2, s. 107-108
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 22. |
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| 23. |
- Eneslätt, Malin, et al.
(författare)
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Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards
- 2021
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 35:1_suppl
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: There is growing interest in community-based advance care planning (ACP) interventions, but few studies investigate the societal impact of such initiatives. A Swedish adaptation of the GoWish cards, the DöBra cards, were used as a tool in the SweACP participatory action research project with older people in the community, without imminent End-of-Life (EoL) care needs. Due to popular demand, the DöBra cards were later made available to the general public as a social innovation.Aim: To explore how the publicly available DöBra cards have been disseminated and used without researchers’ engagement, to provide a basis for understanding their impact in a wider community setting.Methods: Using a Ripple Effects Mapping approach, we followed three chains of dissemination of the DöBra cards originating in a patient organization, a national interest organization for older people, and in a health care organization. Data were collected through interviews with 20 participants and analyzed with directed content analysis.Results: A variety of strategies for use were noted, as the DöBra cards were adapted to fit needs in different personal, professional, and organizational settings. The cards were found to act as both a means to raise awareness about EoL issues in different contexts, as well as an end in themselves, e.g. by facilitating ACP conversations for people with serious disease. Resistance, from various instances, to use or promotion of the DöBra cards was however also found. Impact included personal development as well as strengthened personal and professional relationships, with potential to affect EoL care provision.Conclusions: The broad dissemination of the DöBra cards in a variety of contexts beyond those controlled by researchers, has led to capacity building in dealing with EoL issues in the community, as the topic of dying and death has been brought to agendas in new contexts.
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| 24. |
- Friedrichsen, Maria, et al.
(författare)
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Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
- 2002
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 16:4, s. 323-330
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cancer patients' interpretations of the meaning of words used when given bad news are not well studied in medical settings. The aim of this study was to ascertain what significance verbal expressions had for cancer patients when they were given information about ending active tumour treatment, and what message they felt they received. METHODS: Tape-recorded semi-structured interviews were performed and analysed using a qualitative phenomenographical approach. RESULTS: Thirty patients with incurable cancer admitted to hospital-based home care unit in Sweden participated. Three main categories about the significance of words emerged: 1) words could indicate indirect warnings as being forewarnings, evasive or ambiguous; 2) words could also be perceived as emotionally trying, as threats or abandoning; 3) other words were fortifying and strengthened the patient in this situation. The overall message given during the information could be interpreted differently: either focused on treatment, on quality of life, or on threat and death. CONCLUSION: The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.
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| 25. |
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