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  • 1.
    Blomberg, Karin
    et al.
    Örebro universitet, Institutionen för hälsovetenskaper.
    Lindqvist, Olav
    Harstäde, Carina Werkander
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Kalmar/Växjö, Sweden.
    Söderman, Annika
    Örebro universitet, Institutionen för hälsovetenskaper.
    Östlund, Ulrika
    Center for Research & Development, Uppsala University/Region Gävleborg, Gävle, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Translating the Patient Dignity Inventory2019Ingår i: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 25, nr 7, s. 334-343Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    BACKGROUND: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden.

    AIMS: To translate the PDI into Swedish, including cultural adaptation for clinical use.

    METHODS: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs).

    FINDINGS: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs.

    CONCLUSION: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.

  • 2.
    Bylund-Grenklo, Tove
    et al.
    Department of Caring Science, University of Gävle, Gävle, Sweden; Department of Oncology Pathology, Karolinska Institutet, Stockholm, Sweden.
    Werkander-Harstäde, Carina
    Department of Health and Caring Sciences, Linnaeus University, Växjö, Växjö, Sweden; enter for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Sandgren, Anna
    Department of Health and Caring Sciences, Linnaeus University, Växjö, Växjö, Sweden; enter for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Benzein, Eva
    Department of Health and Caring Sciences, Linnaeus University, Växjö, Växjö, Sweden; enter for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Östlund, Ulrika
    Örebro universitet, Institutionen för hälsovetenskaper. Region Örebro län. Centre for Research and Development, Uppsala University/Region Gävleborg, Gävle, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Dignity in life and care: the perspectives of Swedish patients in a palliative care context2019Ingår i: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 25, nr 4, s. 193-201Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.

    Aims: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.

    Methods: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.

    Results: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.

    Conclusion: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.

  • 3.
    Henriksson, Anette
    et al.
    Örebro universitet, Hälsoakademin.
    Andershed, Birgitta
    Örebro universitet, Hälsovetenskapliga institutionen.
    A support group programme for relatives during the late palliative phase2007Ingår i: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 13, nr 4, s. 175-183Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives’ experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study’s findings show that interventions of this kind may be integral to the relatives’ ability to handle their situation when caring for a terminally ill family member.

  • 4.
    Österlind, Jane
    et al.
    Örebro universitet, Hälsovetenskapliga institutionen.
    Hansebo, Görel
    Ersta Sköndal högskola, institutionen för vårdvetenskap.
    Lantz, Göran
    Ersta Sköndal högskola.
    Ternestedt, Britt-Marie
    Ersta Sköndal högskola, enheten för forskning om vård i livets slutskede.
    Pathways in end-of-life care for older people: care managers' reasoning2008Ingår i: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 14, nr 9, s. 420-425Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Seven care managers employed by a large municipality in Sweden were interviewed concerning their reasoning regarding end-of-life care for older people. Data were analyzed using a hermeneutic approach. The results showed that end-of-life care was considered to constitute a small part of the care managers’ work and was something they did not focus on in general when assessing care needs. Two different pathways to death – the natural and the medical – were identified. In the natural pathway, death was invisible and the care was more routine-oriented. In the medical pathway, death was visualised and the care more individualised. Neither of the pathways paid attention to communication or existential needs. Thus, there is a need for a palliative pathway to death based on the philosophy of palliative care, which could provide guidance for care managers and promote opportunities for older people to achieve a dignified dying and death.

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