| 1. |
- Melcher, Ulrica, et al.
(author)
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Teenagers with a Dying Parent : A Qualitative Retrospective Study
- 2014
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In: 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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Conference paper (other academic/artistic)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. |
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| 4. |
- 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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| 5. |
- Ahlner-Elmqvist, Marianne, et al.
(author)
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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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In: Palliative Medicine. - : Arnold Schönberg Center. - 0269-2163 .- 1477-030X. ; 18:7, s. 585-593
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Journal article (peer-reviewed)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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| 6. |
- Albinsson, L, et al.
(author)
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Differences in supporting families of dementia patients and cancer patients: a palliative perspective
- 2003
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In: Palliative medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 17:4, s. 359-367
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Journal article (peer-reviewed)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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| 7. |
- 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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| 8. |
- 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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| 9. |
- Beck, Ingela, et al.
(author)
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Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden
- 2016
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Conference paper (other academic/artistic)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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| 10. |
- 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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| 11. |
- 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
-
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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| 12. |
- 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
-
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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| 13. |
- Brännström, Margareta, et al.
(author)
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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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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 30:1, s. 54-63
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Journal article (peer-reviewed)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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| 14. |
- Böling, Susanna, et al.
(author)
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Rethinking Consultation - Investigating the Perceived Work Models of a Palliative Consultation Team
- 2018
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In: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract PO38. - : SAGE Publications. - 0269-2163 .- 1477-030X.
-
Conference paper (other academic/artistic)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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| 15. |
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| 16. |
- Carling Elofsson, Linnea, et al.
(author)
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Meanings of being old and living with chronic obstructive pulmonary disease
- 2004
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In: PALLIATIVE MEDICINE. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 18:7, s. 611-618
-
Journal article (peer-reviewed)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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| 17. |
- 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
-
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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| 18. |
- 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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| 19. |
- Currow, David C., et al.
(author)
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Sleeping-related distress in a palliative care population : A national, prospective, consecutive cohort
- 2021
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 35:9, s. 1663-1670
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Journal article (peer-reviewed)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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| 20. |
- De Vleminck, A, et al.
(author)
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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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In: Palliative medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 36:5, s. 878-888
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Journal article (peer-reviewed)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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| 21. |
- Diffin, Janet, et al.
(author)
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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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In: 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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Conference paper (other academic/artistic)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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| 22. |
- Edenbrandt, Carl-Magnus
(author)
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From Sweden
- 2003
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In: Palliative Medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 17:2, s. 107-108
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Journal article (other academic/artistic)
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| 23. |
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| 24. |
- Elofsson Carling, Linnéa, et al.
(author)
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Meanings of living with chronic obstructive pulmonary disease in old age
- 2004
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In: Palliative Medicine. - 0269-2163. ; 8, s. 611-18
-
Journal article (peer-reviewed)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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| 25. |
- Eneslätt, Malin, et al.
(author)
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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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In: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 35:1_suppl
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Journal article (other academic/artistic)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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| 26. |
- Friedrichsen, Maria, et al.
(author)
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Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
- 2002
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 16:4, s. 323-330
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Journal article (peer-reviewed)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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| 27. |
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| 28. |
- Garon, Michela, et al.
(author)
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A systematic practice review : Providing palliative care for people with Parkinson’s disease and their caregivers
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In: Palliative Medicine. - 0269-2163.
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Research review (peer-reviewed)abstract
- Background: People with Parkinson’s disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. Aim: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson’s disease and their caregivers. Design: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the ‘do’, ‘do not do’ and ‘do not know’ recommendations for palliative care. Data sources: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. Results: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. Conclusions: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson’s disease and their caregivers.
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| 29. |
- Groeneveld, E. Iris, et al.
(author)
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Funding models in palliative care : Lessons from international experience
- 2017
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 31:4, s. 296-305
-
Research review (peer-reviewed)abstract
- Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: • Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. • Funding is frequently characterised as a mixed system of charitable, public and private payers. • The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.
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| 30. |
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| 31. |
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| 32. |
- Hamdan Alshehri, Hanan, et al.
(author)
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Adaptation of a Palliative Care Approach in the Context of Intensive Care: A Systematic Literature Review
- 2019
-
In: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P02-385. Palliative Medicine, vol. 33, issue 1. - : SAGE Publications.
-
Conference paper (other academic/artistic)abstract
- Background Palliative care is assumed to be an integral part of care in Intensive Care Units (ICU), yet, research still indicates lack knowledge about how to adapt, integrate and adopt palliative care in curative focused contexts such as in intensive care. Aim To identify factors influencing the integration of a palliative care approach in the context of ICU. Method A systematic review based on quantitative and qualitative studies using a thematic synthesis of the articles was performed. The following search term were used: Implementation, palliative care and ICU. In total 1843 articles were screened, and 25 articles were eligible for this review. Result: The findings show that the influencing factors for integrating a palliative care approach are multifaceted. Themes were identified; facilitators and barriers for implementation and adaptation on organizational level (facilitating policies and environmental support, care pathways, prognostication , multidisciplinary team, training and education) and interpersonal level (communication conflict, emotional and spiritual support, person-centred care and patient and family involvement). Conclusion To adopt a palliative care approach into the ICU setting, the integration process requires adaption of organizational support and personal beliefs and attitudes within the entire multi-professional team including the manager as well as patient and family.
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| 33. |
- Hauksdottir, A., et al.
(author)
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Towards better measurements in bereavement research: order of questions and assessed psychological morbidity
- 2006
-
In: Palliat Med. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 20:1, s. 11-6
-
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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| 34. |
- Henoch, Ingela, 1956, et al.
(author)
-
Nursing Students’ Attitudes toward Caring for Dying Persons - Development during Nurse Education.
- 2016
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In: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
-
Conference paper (other academic/artistic)abstract
- Background and aim: Most nurses will care for dying patients in their work and nursing education need to prepare students for this task. The attitudes toward dying and death, and communication with patients and families are important issues in palliative care education. The aim was to describe nursing students’ attitudes toward caring for dying patients during undergraduate education, factors influencing changes in attitudes, and how prepared students feel to perform end of life care. Design and methods: This is a longitudinal study exploring the development of nursing students’ attitudes to care for dying patients with the questionnaire Frommelt Attitude Toward Care of the Dying Scale (FATCOD) first, at the beginning of their education (T1), second, at the beginning of the second year (T2) and finally, at the end of the third year of education (T3). FATCOD is a 30 item questionnaire exploring attitudes to care for dying patients; items are rated on a five-point Likert scale. Total FATCOD score, all items summated ranging from 30 to 150, for T1, T2 and T3 was analyzed with ANOVA. Length of theoretical and presence of practical palliative care education were hypothesized to influence changes in attitudes. Students also evaluated support and preparation from education. At all three occasions, 117 nursing students from six universities in Sweden participated. Results and interpretation: The total FATCOD increased from 126 to 132 from T1 to T3. Theoretical palliative care education became significant predictor of changes in attitudes towards caring for dying patients in that five weeks education better predicted changes in attitudes than three weeks. Students with five weeks theoretical palliative care education also felt more prepared and supported by the education to take care of a dying patients. Students did not feel prepared to take care of a dead body or meet families. Although nursing students’ attitudes increased, they need more preparation in palliative care.
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| 35. |
- Henoch, Ingela, 1956, et al.
(author)
-
The 6S Dialogue Tool to Facilitate Person-centered Palliative Care
- 2019
-
In: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
-
Conference paper (peer-reviewed)abstract
- Background: Palliative care must be planned in accordance with patients’ needs, beliefs and preferences. The 6S person-centered palliative care model aims to co-create care together with patient and family in order to achieve good quality palliative care and a peaceful death for patients. The model includes six concepts that will facilitate to plan a person-centered care for patients in palliative care. The concepts are Self-image, Symptom relief, Self-determination, Social relationships, Synthesis, and Strategies. The 6S Dialogue Tool was elaborated to concretize the concepts. Aim: To explore if the 6S Dialogue Tool covers the meaning of the S-concepts in the 6S person-centered palliative care model. Methods: This is a qualitative study where data was collected with structured questions and patients responded in an open-ended format to the 15 questions in the 6S Dialogue Tool. Forty-six patients in palliative care services in Sweden responded to the 6S Dialogue Tool from May 2015 to August 2016. Responses were analyzed with qualitative content analysis. Results: Six categories related to the 6S concepts were formulated: Selfimage was illustrated of Maintaining everyday life, Symptom relief was related to Challenges in everyday life, Self-determination concerned Maintaining control, Social relations was illustrated by Maintaining selected relations, Synthesis was related to Appraisal of life, and Strategies was illustrated by Appraisal of future. Conclusion: The responses to the 6S Dialogue Tool questions illuminated the intent and meaning of the 6S-concepts. The 6S Dialogue Tool questions are suitable for obtaining patients’ preferences and could be used as an approach in palliative care. Nurses should integrate both 6S-concepts and questions in their approach to obtain the patient’s own view of the situation and make it possible to co-create palliative care in dialogue with the patient and improve the possibilities for patients to have an appropriate death.
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| 36. |
- Henriksson, Anette, 1967-, et al.
(author)
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Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness
- 2012
-
In: Palliative Medicine. - London, United Kingdom : SAGE Publications. - 0269-2163 .- 1477-030X. ; 26:7, s. 930-938
-
Journal article (peer-reviewed)abstract
- Background: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving. Aim: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness. Design: Correlational. Setting/participants: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability. Results: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9. Conclusions: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture. © 2011 The Author(s).
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| 37. |
- Henriksson, Anette, 1967-, et al.
(author)
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Effects of a support group programme for patients with life-threatening illness during ongoing palliative care
- 2013
-
In: Palliative Medicine. - London, United Kingdom : SAGE Publications (UK and US). - 0269-2163 .- 1477-030X. ; 27:3, s. 257-264
-
Journal article (peer-reviewed)abstract
- Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. less thanbrgreater than less thanbrgreater thanAim: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. less thanbrgreater than less thanbrgreater thanDesign: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. less thanbrgreater than less thanbrgreater thanSettings/participants: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons. less thanbrgreater than less thanbrgreater thanResults: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes. less thanbrgreater than less thanbrgreater thanConclusions: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.
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| 38. |
- Henriksson (Alvariza), Anette, et al.
(author)
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Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care : A correlational, cross-sectional study
- 2013
-
In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 27:7, s. 639-646
-
Journal article (peer-reviewed)abstract
- Background: Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. Aim: The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. Design: This was a correlational study using a cross-sectional design. Setting/participants: The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Result: Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Conclusion: Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.
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| 39. |
- Henriksson (Alvariza), Anette, et al.
(author)
-
Feelings of Reward among Family Caregivers during Ongoing Palliative Care
- 2014
-
In: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; , s. 613-614
-
Conference paper (peer-reviewed)abstract
- Objectives: Palliative family caregivers appear to experience rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have especially attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. This study aimed to describe feelings of rewards among family caregivers during ongoing palliative care. A further aim was to compare experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and the study took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were used to describe characteristics of the participants and the level of rewards. Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported in general high levels of reward.The largest source of rewards was feelings of being helpful to the patient. This was closely followed by rewards as a consequence of giving something to the patients that brought her/him happiness and being there for the patient. The smallest sources of rewards were personally growth, self-satisfaction and personal meaning. There was an association between rewards and age but not between men and women. Conclusions: Family caregivers experienced rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of rewards seem to be about handling the situation in a satisfying way, to feel competent and confident to take care of the patient and thereby feel proud. Support could preferably be designed aiming to improve family caregiver’s ability to care and to facilitate rewards of caregiving and focus on strengths and resources.
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| 40. |
- Holm, Maja, et al.
(author)
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Measurement Properties of the Anticipatory Grief Scale in a Sample of Family Caregivers in the Context of Palliative Care
- 2018
-
In: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract FC53. - 0269-2163 .- 1477-030X.
-
Conference paper (other academic/artistic)abstract
- Background: The Anticipatory Grief Scale (AGS) consists of 27 items and was developed to measure grief before the death of a loved one. Although it was originally developed to be used in the context of demen- tia, the instrument is relevant in palliative care where family caregivers often face a complex and difficult situation before the patient’s death. Because family caregivers with high levels of anticipatory grief might have need for more support both during ongoing palliative care and in bereavement, it is important to use valid instruments to measure grief reactions in anticipation of the patient’s death. Aim: The aim was to evaluate the measurement properties of the AGS in a sample of family caregivers in palliative care. Methods: In this psychometric study, data were collected in the context of ongoing palliative care and 270 family caregivers were included in the study. The family caregivers completed a questionnaire, including the AGS and demographic questions. The factor structure (construct validity) of the scale was evaluated using exploratory factor analysis for ordinal responses. Ordinal alpha (α) was used to estimate internal consistency. Results: The results of the exploratory factor analysis suggested that there were measurement problems and inconsistencies concerning the original AGS. Further analysis supported that the number of items should be reduced from 27 to 13 items. Analysis of the remaining items sug- gested a two-factor solution. The two dimensions captured the Behavioral reactions and Emotional reactions of grief in family caregivers in pallia- tive care. Internal consistency was satisfactory for both scales, α=0.83 and α=0.84 respectively. Conclusions: This study resulted in a revised 13 item version of the AGS, including two dimensions. The instrument appears to be promising for use in palliative care and in research but the measurement properties of the revised AGS needs to be confirmed in further studies. Funding This study was supported by the Swedish Cancer Society.
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| 41. |
- Holm, Maja, et al.
(author)
-
Measurement Properties of the Texas Revised Inventory of Grief in a Sample of Bereaved Family Caregivers
- 2018
-
In: Palliative Medicine : A Multiprofessional Journal. Vol. 32, Suppl. 1. Abstract PO121. - : SAGE Publications. - 0269-2163 .- 1477-030X.
-
Conference paper (other academic/artistic)abstract
- Background: The Texas Revised Inventory of Grief (TRIG) is a well- used instrument designed to measure the intensity of post-loss grief. It consists of two subscales; Past Behaviours involves thinking back to the time just after a loved one’s death and Present Feelings focuses on the current situation. The two subscales consist of 8 and 13 items respec- tively and lower scores indicate more intense grief. Because family car- egivers in palliative care may be in need of support during bereavement, the TRIG could be an important instrument to measure their grief reac- tions. Hence it needs to be validated for further use in palliative care. Aim: The aim was to evaluate measurement properties of the TRIG in a sample of bereaved Swedish family caregivers. Methods: In this psychometric study, the TRIG was translated to Swedish according to standard principles. Data were collected from 129 bereaved family caregivers whose loved ones had been enrolled in palliative care units. The family caregivers completed the TRIG and demographic ques- tions six months after the death of the patient. Separate exploratory factor analyses for ordinal responses were used to evaluate the factor structure (i.e. construct validity) for each subscale. Ordinal alpha (α) was used to estimate internal consistency. Results: The exploratory factor analyses showed that both the Past Behaviours and Present Feelings measure one underlying construct, sup- porting construct validity. Internal consistency was satisfactory for both scales, α=0.92 and α=0.95 respectively. Conclusions: The results show that the two subscales of the TRIG Past Behaviours and Present Feelings are unidimensional, i.e., measuring one underlying construct. Hence, the two subscales could be used in palliative care after the patient’s death in order to capture both the past and current levels of grief in family caregivers. However, it is also necessary to con- tinue validating the TRIG in a larger sample. Funding This study was supported by the Swedish cancer society.
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| 42. |
- Holm, Maja, et al.
(author)
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The Process of Preparedness for Caregiving among Family Members in Palliative Home Care
- 2014
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In: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; , s. 622-623
-
Conference paper (peer-reviewed)abstract
- Background: Preparedness for caregiving has been found to be an important concept in palliative home care where family members are taking a great responsibility for the patient’s care. Low preparedness has been linked to negative consequences and a greater burden for these family members. Preparedness has been defined as the perceived readiness to provide care and could be seen as a continuous process rather than a static condition. Aim: The aim of the study was to describe the process of preparedness for caregiving among family members in palliative home care. Method: An interpretive descriptive design was chosen. A strategic sampling method was applied and 12 family members of patients in specialised palliative home care were interviewed, using a semi-structured interview guide. The interviews were analysed by constant comparative analysis, using the software program NVivo. Results: The process of preparedness for caregiving included three patterns: Awaring, adjusting and grieving. The process was not described as linear but rather a continuous process where the family members were moving between the patterns during the trajectory. In all three patterns, grief was an important factor, affecting the caregiver role and the family members´ preparedness for caregiving. Conclusion: Exploring the process of preparedness for caregiving in family members could bring a greater understanding for this group and provide health professionals with new insights in how to support them.
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| 43. |
- Hommerberg, Charlotte, 1960-, et al.
(author)
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Rendering the ungraspable graspable : the use of metaphors in Swedish palliative cancer care
- 2016
-
In: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 30:6, s. NP364-NP364
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Journal article (other academic/artistic)abstract
- Good communication is of utmost importance in all forms of cancer care and especially so in the palliative context. To render the ungraspable graspable, metaphors are frequently used drawing on their capacity to capture the intangible in terms of more familiar experiences. For instance, to die from cancer can be described as ’coming to the end of a life journey’ or ’losing a battle’. Metaphors are largely language and culture specific. Today’s increasingly multicultural societies require particular awareness in order to achieve dignified, individualized palliative cancer care. This project aims to strengthen the scientific foundation for the use of metaphors in Swedish palliative cancer care. A secondary aim is to compare the use of metaphors in Sweden and the UK in order to reveal differences and similarities. Textual data are collected froma) internet-based blogs, where patients write about their illness-related emotions and experiences while being in palliative care, and fromb) interviews with patients, family and health care professionals, where the focus is to investigate what it means to live a dignified life in palliative care.The two sets of data are analyzed using both qualitative and quantitative linguistic methods. First, the Pragglejaz procedure, a well-established linguistic method for metaphor identification, is used in order to manually identify metaphorical expressions in the material, develop analytic categories adapted to the Swedish language data and ensure inter-rater reliability. Second, the material is approached by means of corpus linguistic methods. The combination of research methods is inspired by the UK-based MELC project. The data are currently being processed and the first results will be presented at the conference. The project is funded by The Kamprad Family Foundation, Sweden.
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| 44. |
- Hudson, P L, et al.
(author)
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Strategies and checklist for designing and conducting palliative care research with family carers : EAPC international expert elicitation study
- 2023
-
In: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 37:1, s. 163-173
-
Journal article (peer-reviewed)abstract
- BACKGROUND: Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement.AIM: To develop strategies to improve the design and conduct of research with family carers.DESIGN: Expert elicitation study using an adapted version of the 'Identify, Discuss, Estimate and Aggregate' elicitation protocol, supplemented with strategies from peer-reviewed literature.SETTING/PARTICIPANTS: Nine members of the management committee of the European Association for Palliative Care's Reference group on family carer research, comprising international senior research academics in family caregiving.RESULTS: A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals.CONCLUSIONS: The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.
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| 45. |
- 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
-
In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 20:6, s. 567-77
-
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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| 46. |
- Håkanson, Cecilia, et al.
(author)
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Experience-based knowledge in the care of homeless people with severe illness and complex care needs
- 2014
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 28:6, s. 789-789
-
Journal article (peer-reviewed)abstract
- Background: The number of homeless people in Sweden amounts to approximately 34 000. Of those about 4500 live in streets or shelters. The mortality rate among homeless people outnumbers other groups in the society. Often they have severe, multiple mental and physical illnesses, drug abuse and a variety of complex care needs, including palliative. From an international perspective, research related to care for homeless people with severe illness and complex care needs is very sparse (no Swedish studies have been identified). Among the few that have been found, challenges related to the homeless situation and the illness panorama are reported. From the perspective of the homeless persons themselves, studies report stigmatisation, lack of respect and competence among health-care professionals, and insufficient organisation of health care.Aim: The aim of this study is to explore the development of experience-based knowledge among health care professionals and social workers in a unique setting, in which advanced inpatient health -and social care, including palliative care is provided to homeless people.Methods: In this on-going qualitative case-study, clinically relevant and applicable knowledge is focused. Repeated focus group discussions and coupled thematic interviews were performed with staff (physicians, social workers, mental carers, nurses). Analysis is performed with an interpretive descriptive method.Results and implication: The results, which are currently being processed, will present staffs’ experiences of identification and assessment of individual care needs, specific knowledge development and requirement in relation to palliative care and homelessness, and challenges, obstacles and opportunities for meeting the needs of severely ill and dying homeless people. The results will provide knowledge of importance for the development of care for severely ill homeless persons.
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| 47. |
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| 48. |
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| 49. |
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| 50. |
- Johnston, Bridget, et al.
(author)
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An evaluation of the use of Telehealth within palliative care settings across Scotland
- 2012
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 26:2, s. 152-161
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Journal article (peer-reviewed)abstract
- There is a lack of evidence-based research in the use of Telehealth within palliative care in the UK, particularly in Scotland. The aim of this project was to evaluate the current use of Telehealth applications within palliative care across Scotland, and how these and future applications are perceived by patients, carers and professionals. This paper reports on the qualitative findings from focus groups with patients and carers in three geographical areas in Scotland, and individual interviews with key stakeholders from across Scotland, who currently work within areas of high and low Telehealth activity. The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative. The stakeholder interviews revealed several notable differences between those working within areas of high and low Telehealth activity. Principally, areas of high Telehealth activity appear to be driven by national and local policy and seem to benefit from a greater level of investment in Telehealth equipment and facilities than in the more central, and hence accessible, parts of Scotland.
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