| 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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