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- Schenell, Ramona, 1978, et al.
(författare)
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Att kommunicera framtiden – nödvändigt för självbestämmandet.
- 2018
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Ingår i: 5:e Nationella konferensen i Palliativ vård i Stockholm, 2018-03-21 – 22..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Många människor lever sin sista tid i livet på särskilt boende för äldre och både förmågan att fatta och genomföra beslut kan vara nedsatt på grund av kognitiva och fysiska förluster. Många av de boende upplever att de inte kan vara autonoma och självbestämmande i sin vardag. Syfte: Att beskriva personalens upplevelser av kommunikation relaterat till de boendes självbestämmande i palliativt skede på särskilt boende. Metod: Individuella semistrukturerade intervjuer med 20 sjuksköterskor, undersköterskor och läkare genomfördes och analyserades induktivt med kvalitativ innehållsanalys. Resultat: Enligt personalen är kommunikation avgörande för självbestämmande i palliativt skede på särskilt boende. Både de boendes egna förmågor att kommunicera och det stöd de kan få från omgivningen när förmågan är nedsatt har betydelse för att upprätthålla självbestämmandet. Även den interprofessionella kommunikationen i vårdteamet påverkar självbestämmandet då avsaknad av planering inför framtiden till exempel kan bero på hierarkisk kommunikationskedja, rädsla att tala om döden och de olika professionernas olika tolkningar av begreppen palliativ, ej HLR och brytpunktsamtal. Att inte kommunicera om önskemål vid försämring kan enligt personalen leda till ofrivilliga sjukhusinläggningar och andra icke önskvärda livsuppehållande åtgärder i livets slut. Slutsats/konklusion: Olika tolkningar och rädslor förknippade med samtal kring livets slut kan hindra självbestämmandet vilket innebär att den interprofessionella kommunikationen likväl som kommunikationen mellan personal, boende och närstående behöver förbättras. Genom att redan i ett tidigt skede ha ett tydligt palliativt förhållningssätt med fokus på livskvalitet kan kommunikation om vårdens planering underlättas.
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| 2. |
- Schenell, Ramona, 1978, et al.
(författare)
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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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Ingår i: International Journal of Older People Nursing. - : Wiley. - 1748-3735 .- 1748-3743. ; 14:4
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Tidskriftsartikel (refereegranskat)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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| 3. |
- Schenell, Ramona, 1978, et al.
(författare)
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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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Ingår i: Palliative Medicine : A Multiprofessional Journal. - 0269-2163 .- 1477-030X.
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Konferensbidrag (refereegranskat)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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| 5. |
- Schenell, Ramona, 1978, et al.
(författare)
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Residents' and family members' perceptions of care quality and self-determination in palliative phase in residential care.
- 2020
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Ingår i: Palliative & supportive care. - 1478-9523. ; 18:1, s. 69-81
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Tidskriftsartikel (refereegranskat)abstract
- Dependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences.This cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions.QoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences.Broad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.
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| 6. |
- Schenell, Ramona, 1978, et al.
(författare)
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Struggling for a Dignified Life: The Meaning of Self-Determination in Palliative Phase in Residential Care
- 2020
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Ingår i: International journal for human caring. - 1091-5710. ; 24:2, s. 147-157
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Tidskriftsartikel (refereegranskat)abstract
- o understand the meaning of self-determination in residential care, as experienced by residents in the palliative phase, a hermeneutic approach was used to analyze 20 interviews. The results showed that lacking self-determination threatened the residents' experiences of living a dignified life. Bodily decline and dependency forced residents to adapt to new circumstances, making them experience changes in self-image, loneliness, a loss of influence over their lives, and a diminishing of their needs. To navigate this new situation, they strove to keep control over their lives, held on to their identities, and accepted help from trusted persons.
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| 7. |
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| 8. |
- Schenell, Ramona, 1978, et al.
(författare)
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To make and execute decisions throughout life: A person-centred model that facilitates self-determination in residential care, developed through participatory research
- 2020
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Ingår i: Applied Nursing Research. - : Elsevier BV. - 0897-1897. ; 55
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of the study was to develop a model that facilitates self-determination in residential care. Background: The right to decide on one's own life is self-evident to most adult persons. Nevertheless, dependency on others and the routine-based care that sometimes is provided in residential care, limit the residents' possibilities of self-determination. Methods: The study had a participatory research design using appreciative inquiry in focus group discussions with staff, residents, and care managers. The research process and the model were audited by two expert groups: a scientific reference group and a dementia-specialist reference group. A theoretical framework of relational autonomy and person-centred care was also used. Results: By combining practical and theoretical knowledge, the model “To make and execute decisions throughout life” was developed. The core message of “In my way, at my pace, with the help of you” was reinforced by the categories “See me as a competent person”, “Show me professional consideration”, “Meet me in a trustful relationship”, “Give me opportunity to a meaningful and safe day”, “Support me in being independent”, “Let me have power over my own life”, and “Help me to plan my end-of-life care”. Conclusion: The model “To make and execute decisions throughout life” provides a base for a person-centred approach to care. By reflecting on the core message and the different categories in the model, staff can be inspired to see their own contribution to the residents' self-determination and find ways to facilitate it despite the many obstacles. © 2020 The Authors
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| 9. |
- Andersson, Klara, et al.
(författare)
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Multiple stigma among first-generation immigrants with epilepsy in Sweden
- 2021
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Ingår i: Epilepsy and Behavior. - : Elsevier BV. - 1525-5050. ; 115
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. Methods: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. Results: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme “It is a fight to be appreciated as a person and member of society” illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. Conclusions: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable. © 2020 Elsevier Inc.
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| 10. |
- Andersson, Klara, et al.
(författare)
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Perceived stigma in adults with epilepsy in Sweden and associations with country of birth, socioeconomic status, and mental health
- 2022
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Ingår i: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050. ; 136
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Tidskriftsartikel (refereegranskat)abstract
- Background: Stigma contributes to negative health outcomes and amplifies health disparities in epilepsy. This study aimed to investigate associations of perceived stigma with the country of birth and socioeco-nomic status (SES). Methods: This is a cross-sectional questionnaire study. Participants were recruited consecutively from three demographically different neurology outpatient clinics in the southwest of Sweden. Participants responded to a questionnaire concerning their epilepsy, country of birth, mother tongue, and different SES-variables. The Neuro-QOL stigma scale and the Jacoby stigma scale were applied to assess stigma and the Hospital Anxiety and Depression Scale (HADS) and PROMIS Mental Health scale were applied to assess mental health. Results: In total 161 adults with epilepsy were included in the cohort. The median Neuro-QOL stigma score was 48.3, and was higher among foreign-born than in native-born participants (foreign-born in non-European country 52.3, in other European country 49.8, and in native-born 47.0, p = 0.003). Other factors associated with Neuro-QOL were seizure frequency last year (>= 2 seizures 52.4 compared to 1 sei-zure 50.9 and no seizures 44.3, p < 0.001), having had seizures in public (yes 50.9 compared to no 44.7, p = 0.035), HADS depression score >= 11 (57.4 compared to 47.8 for score <11 points, p < 0.001), HADS anx-iety score >= 11 (53.5 compared to 46.8 for score <11 points, p < 0.001), and lower PROMIS Mental Health score (42.9 for PROMIS < 40 compared to 54.4 for PROMIS > 60, p < 0.01). A stepwise multiple regression analysis indicated that having had seizures the last year increased the average Neuro-QOL stigma score with 5.89 and appeared as the most determining factor for the Neuro-QOL stigma score among the vari-ables investigated. Conclusions: It is important that the concerns of foreign-born patients are acknowledged and that the focus of seizure control and the detection and treatment of comorbidities are prioritized in the manage-ment of epilepsy and perceived stigma. (c) 2022 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).
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