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  • Harstäde, Carina Werkander, et al. (författare)
  • Dignity-conserving care actions in palliative care : an integrative review of Swedish research.
  • 2018
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 32:1, s. 8-23
  • Forskningsöversikt (refereegranskat)abstract
    • Background: Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self‐image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons’ dignity is a crucial challenge for professional nurses. The ‘Dignity Care Intervention’ addresses the multidimensionality of dignity by identifying patients’ dignity‐related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity.Methods: An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms ‘dignity’ and ‘palliative care’. Result sections of articles and theses were reviewed for dignity‐conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov's model of dignity.Results: Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision‐making. Additionally, nurses’ perceptiveness towards the patients was a core approach.Conclusion: The review offers culturally relevant suggestions on how to address specific dignity‐related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person‐centred palliative care that will conserve patients’ dignity.
  • Riggare, Sara, et al. (författare)
  • “You have to know why you're doing this” : a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease
  • 2019
  • Ingår i: Spetspatienter. ; 19:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD.Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking.Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare.Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.
  • Ahlzen, Rolf (författare)
  • Illness as unhomelike being-in-the-world? : Phenomenology and medical practice
  • 2011
  • Ingår i: Medicine, Health care and Philosophy. - : Springer. - 1386-7423 .- 1572-8633. ; 14:3, s. 323-331
  • Tidskriftsartikel (refereegranskat)abstract
    • Scientific medicine has been successful by ways of an ever more detailed understanding and mastering of bodily functions and dysfunctions. Biomedical research promises new triumphs, but discontent with medical practice is all around. Since several decades this has been acknowledged and discussed. The philosophical traditions of phenomenology and hermeneutics have been proposed as promising ways to approach medical practice, by ways of a richer understanding of the meaning structures of health and illness. In 2000, Swedish philosopher Fredrik Svenaeus published a book where he proposes that the phenomenological hermeneutics of Martin Heidegger and also the reflections on health and illness of Hans-Georg Gadamer offer important ways to approach the nature of medicine. In particular, Svenaeus argues that the goal of medicine is to promote and restore health, and that health ought to be seen as "homelike being-in-the-world". Unhealth, illness, consequently should be understood as a situation where a person's "being-in-the-world" in characterized by that lack of the rhythm, balance and "tune" of everyday living that characterizes not "being at home". In this article, Svenaeus' position is briefly outlined. Questions are raised whether "unhomelikeness" is to be seen as a metaphor, and, if so, if it is a fruitful such. Furthermore, I discuss whether or not a discourse on health and illness in these terms may be misleading in a situation where the ontological presuppositions of Heidegger are lost out of sight and the popular understanding of health psychology predominates. I also approach the question whether Svenaeus' assumptions may inadvertently lead us to an unjustifiably broad understanding of the tasks of medicine. It is finally concluded that Svenaeus phenomenological and hermeneutical approach is both interesting and promising. There are, however, several questions that ought to be pursued further, and the step from philosophical analysis to everyday clinical discourse may be unexpectedly long and risky.
  • Lynøe, Niels, et al. (författare)
  • A misunderstanding. Response to Dr Bilo et al.
  • Ingår i: Acta Paediatrica, International Journal of Paediatrics. - : Wiley-Blackwell Publishing Ltd. - 0803-5253 .- 1651-2227. ; 106:7, s. 1046-1046
  • Tidskriftsartikel (refereegranskat)
  • Lynøe, Niels, et al. (författare)
  • Conflicts of interest issues. Response to Lucas et al.
  • Ingår i: Acta Paediatrica, International Journal of Paediatrics. - : Wiley-Blackwell Publishing Ltd. - 0803-5253 .- 1651-2227. ; 106:7, s. 1036-1036
  • Tidskriftsartikel (refereegranskat)
  • Jonasson, Lise-Lotte, et al. (författare)
  • Managers’ experiences of ethical problems in municipal elderly care : a qualitative study of written reflections as part of leadership training
  • 2019
  • Ingår i: Journal of Healthcare Leadership. - : Dove Medical Press. - 1179-3201 .- 1179-3201. ; 11:63-74
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Managers in elderly care have a complex ethical responsibility to address the needs and preferences of older persons while balancing the conflicting interests and requirements of relatives’ demands and nursing staff’s work environment. In addition, managers must consider laws, guidelines, and organizational conditions that can cause ethical problems and dilemmas that need to be resolved. However, few studies have focused on the role of health care managers in the context of how they relate to and deal with ethical conflicts. Therefore, the aim of this study was to describe ethical problems experienced by managers in elderly care. Methods: We used a descriptive, interpretative design to analyze textual data from two examinations in leadership courses for managers in elderly care. A simple random selection of 100 out of 345 written exams was made to obtain a manageable amount of data. The data consisted of approximately 300 pages of single-spaced written text. Thematic analysis was used to evaluate the data. Results: The results show that managers perceive the central ethical conflicts relate to the older persons’ autonomy and values versus their needs and the values of the staff. Additionally, ethical dilemmas arise in relation to the relatives’ perspective of their loved one’s needs and preferences. Legislations, guidelines, and a lack of resources create difficulties when managers perceive these factors as conflicting with the care needs of older persons. Conclusion: Managers in elderly care experience ethical conflicts that arise as unavoidable and perennial values conflicts, poorly substantiated values, and problematic organizational conditions. Structured approaches for identifying, reflecting on, and assessing ethical problems in the organization should therefore be implemented.
  • Silén, Marit, et al. (författare)
  • Impact of clinical ethics support on daily practice : First-line managers' experiences in the Euro-MCD project
  • 2019
  • Ingår i: ; 27:7, s. 1374-1383
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: To explore first-line managers' experiences of what Moral Case Deliberation has meant for daily practice, to describe perceptions of context influence and responsibility to manage ethically difficult situations.BACKGROUND: In order to find measures to evaluate Moral Case Deliberation, the European Moral Case Deliberation Outcome instrument was developed and is now in the stage of revision. For this, there is a need of several perspectives, one of them being the managerial bird-eye perspective.METHOD: Eleven first-line managers at workplaces, participating in the European Moral Case Deliberation Outcome instrument project, were interviewed and thematic analysis was applied.RESULTS: Managers' experiences were interpreted as enhanced ethical climate: a closer-knit and more emotionally mature team, morally strengthened individuals, as well as ethics leaving its marks on everyday work and morally grounded actions. Despite organizational barriers, they felt inspired to continue ethics work.CONCLUSION AND IMPLICATIONS: This study confirmed, but also added ethical climate aspects, such as morally grounded actions. Furthermore, adding ethical climate as a construct in the European Moral Case Deliberation Outcome instrument should be considered. First-line managers need clear directives from their managers that ethics work needs to be prioritized for the good of both the staff and the patients.
  • Brüggemann, Jelmer, 1981-, et al. (författare)
  • Re-negotiating agency : patients using comics to reflect upon acting in situations of abuse in health care
  • 2019
  • Ingår i: BMC Health Services Research. - : BioMed Central. - 1472-6963 .- 1472-6963. ; 19:1
  • Tidskriftsartikel (refereegranskat)abstract
    • BackgroundThere is a growing body of international research that displays the prevalence and character of abuse in health care. Even though most of these studies are conducted from a patient perspective little is known about how patients conceptualize their agency in relation to such situations. This study aimed to explore how patients reason about their potential to act in abusive situations.MethodsQualitative interviews were conducted with thirteen patients in Sweden. Central in the interviews were three comics, inspired by Boal’s Forum Theatre and part of an earlier online intervention study in which the informants had participated. Each comic showed a situation in which a patient feels abused, and on the opposite side were suggestions for how the patient could act in response. Informants were asked to reflect about situations of abuse and in specific upon the comics. We used the methodology of constructivist grounded theory throughout the study, including the analysis.ResultsIt appeared that the informants constantly re-negotiated their and other patients’ agency in relation to the specifics of the event, patients’ and staff’s responsibilities, and the patients’ needs and values. This process questions views of agency as fixed and self-evident, and can be understood as part of changing discourses about patients’ social role and possibilities to organize their care. Using a feminist theory of power we expected the informants to elicit instances of resistance to domination, which is central to the comics. While doing that, the informants also hinted at parallel stories of empowerment and less visible forms of agency in spite of domination.ConclusionThe current analysis showed different ways in which the informants constantly re-negotiated their agency in potentially abusive situations. Not only did the informants engage in reflections about immediate responses to these untoward situations, they also engaged in thoughts about strategies that could protect them and counteract abuse in health care over the long-term. This opens up for future research into ways patients organize their care and identify threats and barriers to the care they need, which could be valuable knowledge for care quality improvement.
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