| 11. |
- 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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| 12. |
- Cleeve, Helena, et al.
(författare)
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Not just things : the roles of objects at the end of life
- 2018
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Ingår i: Sociology of Health and Illness. - : John Wiley & Sons. - 0141-9889 .- 1467-9566. ; 40:4, s. 735-749
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Tidskriftsartikel (refereegranskat)abstract
- While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.
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| 13. |
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| 14. |
- Forsberg, Karl-Anton, et al.
(författare)
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Meanings of participating in a lifestyle programme for persons with psychiatric disabilities.
- 2011
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 25:2, s. 357-364
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Tidskriftsartikel (refereegranskat)abstract
- Lifestyle changes that affect physical and psychological health are described in research literature; however, the meaning of participating in a lifestyle intervention programme together with the staff has not been described. This study illuminates meanings of participating in a lifestyle programme as experienced by persons with psychiatric disabilities. The first author interviewed five women and six men with schizophrenia and depressive syndrome, aged 26-53, participating in a lifestyle programme. The transcribed interviews were analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. Meanings of participating in a lifestyle programme include my health can be improved as both the physical effects and the obstacles are considered and the daily life is partially given a changed content in new experiences and by participating in something to take pride in. The meanings of participating together with the staff mean an increased sense of closeness and equality with the staff expressed in changes in relationships and the difference between the two groups being revealed and also in becoming aware of the life situation, an insight into the loss of a healthy life but also hope for the future is expressed. The conclusions that could be drawn from this study are that a lifestyle intervention affects health and other important life areas such as the content of daily life and the relationship with the carers, which appears to affect the sense of hope and the ability to see new possibilities. Carers should find situations and activities where the residents and carers participate under equal conditions giving the residents the opportunity to leave the sick roll, experience equality and develop good relationships.
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| 15. |
- Hajradinovic, Yvonne, et al.
(författare)
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Family members' experiences of the end-of-life care environments in acute care settings : A photo-elicitation study
- 2018
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 13:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
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| 16. |
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| 17. |
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| 18. |
- Holm, Maja, et al.
(författare)
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Quality of life in men with metastatic prostate cancer in their final years before death : a retrospective analysis of prospective data
- 2018
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Ingår i: BMC Palliative Care. - : BMC. - 1472-684X. ; 17
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Tidskriftsartikel (refereegranskat)abstract
- Background: Quality of Life (QoL) is the most important outcome for patients in palliative care along with symptom alleviation. Metastatic prostate cancer (mPC) is a life-threatening illness, and hence, a palliative care approach may be beneficial to this group. Over time, new life-prolonging treatments have been developed for men with mPC, but the possibility to prolong life should also be balanced against the men’s QoL, particularly because there are side effects involved with these treatments. The aim of this study was to evaluate QoL, functioning and symptoms in men with mPC during their final years before death.Methods: This is a retrospective analysis of data from a long-term prospective study of men (n = 3885) with prostate cancer from two regions in Sweden. Validated questionnaires asking about participants’ QoL, functioning and symptoms were used to collect data. From the overall study, 190 men with mPC were identified. They were stratified into three groups, depending on the amount of time that had passed between the last questionnaire and their death; < 6 months, 6–18 months and > 18 months before death.Results: Men with mPC generally rated their QoL poorly compared to established clinically significant threshold values. The group of men that were < 6 months before death rated their QoL, functioning and several symptoms significantly worse than the two other groups. Men that died after the year 2006 reported lower QoL and functioning and more pain and fatigue than those who died before 2006.Conclusion: The results in this study indicate that men with mPC have unmet needs with regards to QoL and symptoms. A palliative care approach, alongside possible life-prolonging treatments, that focuses on QoL and symptom relief, may serve as an important frame to give the best support to these men in their final years of life.
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| 19. |
- Kjellgren, Helena, et al.
(författare)
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Exploring Objects at the End of Life
- 2016
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 52:6, s. E37-E37
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: While there has been an increasing recognition that the physical setting matters in end-of-life (EoL) care, objects (e.g. beds, socks, hearing aids) are notably overlooked and it is unknown how they add meaning to care settings, particularly beyond usability and functionality. In our study, we set out to explore the EoL setting from the perspective of family members. Through a preliminary analysis we noted that objects were mentioned throughout the narratives and therefore we focused our analysis on exploring the roles of objects. Methods: We interviewed 25 family members, recruited from residential care facilities, as well as palliative in-patient and homecare units, who had witnessed the dying and death of someone close to them. The interviews were prompted by open inquiries about EoL experiences, rather than specific questions about settings. The narratives were transcribed verbatim and analyzed using thematic analysis. Results: Objects were conceptualized as having interconnected roles relating to temporality, the everyday, and care. Many talked about rearranging objects to mark beginnings and ends in moments of transitions and thus rendering temporality tangible. Simultaneously, objects had roles in transforming everyday life and were assigned new meanings through the contexts they were part of. Objects were also interpreted as signs of care, where lack of sensitivity towards surrounding objects was associated with poor care. Conclusions: Our results indicate that objects are dynamic, in that interaction with objects and the meaning of these interactions change throughout the dying process. This contrasts with other studies, which have tended to approach the EoL settings as discrete with predefined properties, reinforcing instrumental and unidirectional understandings of relationships between people and settings. Our study expands on knowledge of objects in EoL processes and we argue the potential of this knowledge as a means to enhance supportive EoL settings.
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| 20. |
- Kleijberg, Max, et al.
(författare)
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Navigating power dynamics in engaging communities in end-of-life issues? : Lessons learned from developing community-based intergenerational arts initiatives about death and loss
- 2021
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Ingår i: Death Studies. - : Routledge. - 0748-1187 .- 1091-7683. ; 45:8, s. 651-664
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Tidskriftsartikel (refereegranskat)abstract
- Lack of community engagement in end-of-life issues and age-segregation in Swedish society motivated us to develop Studio DöBra, a community-based intergenerational arts initiative to support community engagement in end-of-life issues and develop intergenerational meeting places. Representatives from several community organizations formed a project group with first author MK, to develop Studio DöBra. Based on analysis of exploratory interviews with professionals involved in other, similar initiatives and data from Studio DöBra development, we discuss challenges related to power dynamics in developing initiatives to engage communities in end-of-life issues, and how these can inform the development of similar initiatives.
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