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- Schenell, Ramona, 1978, et al.
(author)
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Balancing between maintaining and overriding the self: Staff experiences of residents' self-determination in the palliative phases
- 2019
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In: International Journal of Older People Nursing. - : Wiley. - 1748-3735 .- 1748-3743. ; 14:4
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Journal article (peer-reviewed)abstract
- Aims and objectives: To investigate, from the staff perspective, residents' self-determination during the palliative phase while in residential care. Background: Residential care facilities have a high prevalence of palliative care needs and dependency. The ability of residents to make and execute decisions may be hindered by their cognitive and physical limitations. There is a need to investigate how residents' self-determination is affected during the palliative phase in residential care. Method: Twenty individual, semi-structured interviews with Registered Nurses, enrolled nurses and physicians working in residential care facilities were analysed with inductive qualitative content analysis. Findings: The overarching main theme, Balancing between maintaining and overriding the residents' self, illuminated how strengthened self-determination affected the residents' self in a positive way, while undermined self-determination affected the residents' self in a negative way. Factors that strengthened self-determination were facilitating the residents' own decision making, acting in accordance with the residents' wishes and acting as the residents' spokesperson when necessary. Factors that undermined self-determination were residents' dependence, others setting the terms, for example, being controlled by routines, insufficient communication, for example, lacking end-of-life care planning and others crossing the boundaries of one's personal sphere. Conclusion: There are serious threats to residents' self-determination but also strategies to cope with these threats. Physical and cognitive frailty and other people setting the terms hinder both making and executing decisions. However, staff can strengthen residents' self-determination and assist in the presentation of residents' self by adopting a relational view of autonomy and by taking personal preconditions into account. There is a need to come to terms with the lack of end-of-life care planning and to give residents a voice in these matters. Implementing a palliative approach early in the illness trajectory could facilitate communication about end-of-life care both within the group of staff and among the residents, relatives and staff. Implications for practice: To maintain residents' self-determination and protect their self, staff need knowledge about residents' life stories and personal preconditions. This in turn requires continuity of care and spending time with residents to build relationships. Implementing an early palliative approach with a focus on factors that promote quality of life for each resident might facilitate communication and enhance decision making both in everyday life and in planning for end-of-life care. © 2019 John Wiley & Sons Ltd
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| 2. |
- Schenell, Ramona, 1978, et al.
(author)
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Difficulties in the Communication about the Future - An Obstacle for Self-determination amongst Residents in Palliative Phase in Residential Care Facilities.
- 2019
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In: Palliative Medicine : A Multiprofessional Journal. - 0269-2163 .- 1477-030X.
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Conference paper (peer-reviewed)abstract
- Background: Residential care facilities are common places of death with a high prevalence of palliative care needs. For some residents the ability to make and execute decisions is reduced due to cognitive or physical losses. Despite that many residents do have capacity in decision making they are not always involved in planning for their own end-of-life care. Aim: To illuminate staffs’ experiences of communication in relation to the residents’ self-determination in the palliative phase. Methods: Twenty individual semi-structured interviews with registered nurses, enrolled nurses, and physicians working in residential care facilities were analyzed with qualitative content analysis. Results: Communication was described as crucial for the self-determination. Both the residents’ own abilities to communicate and the support they could receive from others when the ability was reduced were important factors. Insufficient communication within the care team with e.g. a hierarchical communication chain, fear of talking about death, and the different professions’ interpretations of the terms palliative phase, do not resuscitate (DNR), and end-of-life discussions, also affected the residents’ self-determination, resulting in lack of planning for the future. The lack of end-of-life care planning sometimes resulted in conflicts between the staff and the relatives, hospital admissions, and life prolonging treatments which was quite the opposite of what the staff believed that the residents wanted. Conclusion/discussion: Not planning for end-of life-care compromised the residents’ self-determination and left the staff and the relatives in an uneasy position, when being forced to make decisions without knowing the residents’ wishes. By implementing a palliative approach, with a focus on quality of life, early in the residents’ illness trajectories, communication about end-of-life care, both within the group of staff and between residents, relatives and staff could be facilitated.
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| 4. |
- Fekete, Boglarka, et al.
(author)
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The Gothenburg population-based glioblastoma research database: Methodological aspects and potential impact
- 2019
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In: Neurology and Neurosurgery. - 2631-4339. ; 2
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Journal article (peer-reviewed)abstract
- Background: Glioblastoma Multiforme (GBM) is the most frequently encountered malignant primary brain tumour. Population-based studies of GBM are still scarce. The current paper describes the design of a prospective population-based multidisciplinary research effort on GBM. Objective: To address the impact of a wide range of clinical parameters in relation to clinical outcome and survival in a population-based cohort of patients with GBM. Further, we aim to examine the role of established and novel biomarkers in tumour tissue and blood in relation to response to treatment and clinical outcome. Methods: This is a single institution, population-based study with consecutive inclusion of patients based on a presumed diagnosis of GBM following radiological diagnostic work-up and discussion at a multidisciplinary tumour conference. Clinical parameters and treatment-related parameters at disease onset and during follow-up, and survival will be recorded. Health-related quality of life and emotional wellbeing for patients and their relatives will be assessed. Fresh-frozen and formalin-fixed paraffin-embedded (FFPE) tumour tissue is stored in an associated tissue biobank. Tissue micro-arrays are generated from representative areas of FFPE. Blood samples at admission for surgery and during follow-up are taken and stored frozen. Expected outcome: The study offers a multidisciplinary and translational approach to GBM research by linking a wide range of clinical parameters to biological parameters with high external validity. Thus, we expect to describe patterns of care and clinical course in a well-defined population-based cohort. Through a biomarker approach, we expect to 1) identify new biological subgroups of GBM, 2) explore and validate established and novel biomarkers for response to therapy, 3) estimate the proportion of patients suitable for targeted (“druggable”) therapy, and 4) explore and validate established and novel biomarkers for survival.
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| 5. |
- Ozanne, Anneli, 1978, et al.
(author)
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Dying in Neurological Disease - Different Pattern of Needs
- 2019
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In: 16th Word Congress of the European Association for Palliative Care (EAPC). Berlin, May 23-25, Abstract P01-467.
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Conference paper (other academic/artistic)abstract
- Background: Many neurological diseases are progressive and cause phys- ical and psychological impairments, but motor neuron disease (MND) and tumors in the central nervous system (CNS tumor) often result in more rapid deterioration than other neurological diseases (OND). Aims: Was to compare symptom prevalence and relief, and palliative ori- ented care last week of life for patients grouped in MND, CNS tumor, and OND. Methods: A retrospective study from the Swedish Register of Palliative Care, documenting quality of care indicators during the last week of life in 2011-2012. Multivariable multinomial logistic regression was used to compare the three patient groups. Results: At the study period, 419 patients with MND, 799 patients with CNS tumor, and 1407 patients with OND were reported as underlying cause of death. Last week of life the “Frequencies of “Partial/no relief” / “symptom prevalence” (%)” in Shortness-of-breath was 150/220 (68) in MND, 54/100(54) in CNS tumor, and 177/265 (67) in OND; in the same order it was in Anxiety 94/220 (43), 87/261 (33), and 103/319 (32); in Rattles it was 141/218 (65), 227/462 (49), and 432/774 (56); in Pain it was 57/188 (30), 109/555 (20), and 144/661 (22); in Nausea it was 14/37 (38), 27/70 (39), and 29/54 (54), and in Confusion it was 23/25 (92) 171/196 (87) 148/179 (83). Patients with CNS tumor had greater odds of having totally relieved pain and rattles relative to partly/not at all relieved symptoms compared to MND and OND. Patients with MND and CNS tumor had greater odds of having end-of-life conversations, a consultation of a specialized palliative team and other external competence, and family members having an after death conversationthan in OND. Conclusions: All groups experienced symptom distress with variation in symptom relief. Patients with CNS tumor seem to receive better care than patients with MND and OND. Individual care planning is recom- mended to promote symptom relief regardless of diagnosis.
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| 6. |
- Ozanne, Anneli, 1978, et al.
(author)
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Symptom relief during last week of life in neurological diseases
- 2019
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In: Brain and Behavior. - : Wiley. - 2162-3279. ; 9:8
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Journal article (peer-reviewed)abstract
- Objectives The aim of this study was to investigate symptom prevalence, symptom relief, and palliative care indicators during the last week of life, comparing them for patients with motor neuron disease (MND), central nervous system tumors (CNS tumor), and other neurological diseases (OND). Material & Methods Data were obtained from the Swedish Register for Palliative Care, which documents care during the last week of life. Logistic regression was used to compare patients with MND (n = 419), CNS tumor (n = 799), and OND (n = 1,407) as the cause of death. Results The most prevalent symptoms for all neurological disease groups were pain (52.7% to 72.2%) and rattles (58.1% to 65.6%). Compared to MND and OND, patients with CNS tumors were more likely to have totally relieved pain, shortness of breath, rattles, and anxiety. They were also more likely to have their pain assessed with a validated tool; to receive symptom treatment for anxiety, nausea, rattles, and pain; to have had family members receive end-of-life discussions; to have someone present at death; and to have had their family members offered bereavement support. Both patients with CNS tumor and MND were more likely than patients with OND to receive consultation with a pain unit and to have had end-of-life discussions. Conclusions The study reveals high symptom burden and differences in palliative care between the groups during the last week of life. There is a need for person-centered care planning based on a palliative approach, focused on improving symptom assessments, relief, and end-of-life conversations.
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