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  • 1.
    Brenne, Elisabeth
    et al.
    Norwegian Univ Sci & Technol, European Palliat Care Res Ctr, Fac Med, N-7006 Trondheim, Norway.
    Loge, Jon Håvard
    Norwegian Univ Sci & Technol, European Palliat Care Res Ctr, Fac Med, N-7006 Trondheim, Norway.
    Kaasa, Stein
    Norwegian Univ Sci & Technol, European Palliat Care Res Ctr, Fac Med, N-7006 Trondheim, Norway.
    Heitzer, Ellen
    Med Univ Graz, Div Palliat Med, Dept Internal Med, Graz, Austria.
    Knudsen, Anne Kari
    Norwegian Univ Sci & Technol, European Palliat Care Res Ctr, Fac Med, N-7006 Trondheim, Norway.
    Wasteson, Elisabet
    Mid Sweden University, Faculty of Human Sciences, Department of Psychology. Norwegian Univ Sci & Technol, European Palliat Care Res Ctr, Fac Med, N-7006 Trondheim, Norway.
    Depressed patients with incurable cancer: which depressive symptoms do they experience?2013In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 11, no 6, p. 491-501Article, review/survey (Refereed)
    Abstract [en]

    OBJECTIVE: Diagnosing depressive disorders in palliative care is challenging because of the overlap between some depressive symptoms and cancer-related symptoms, such as loss of appetite and fatigue. In order to improve future assessment of depression in palliative care, depressive symptoms experienced by patients receiving pharmacological treatment for depression were assessed and compared to the American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria for major depressive disorder.

    METHOD: Thirty Norwegian (n = 20) and Austrian (n = 10) patients with advanced cancer were included. Semistructured interviews on symptom experiences were conducted and transcribed verbatim. By the phenomenographic method, patients' symptom experiences were extracted and sorted by headings, first individually and then across patients. The patients subsequently rated 24 symptoms numerically including the DSM-IV depression criteria.

    RESULTS: Lowered mood and a diminished motivational drive were prominent and reflected the two main DSM-IV symptom criteria. A relentless focus on their actual situation, restlessness, disrupted sleep, feelings of worthlessness, feelings of guilt, and thoughts of death as a solution were variably experienced. Appetite and weight changes, fatigue and psychomotor retardation were indistinguishable from cancer symptoms. All these symptoms reflected DSM-IV symptom criteria. Some major symptoms occurred that are not present in the DSM-IV symptom criteria: despair, anxiety, and social withdrawal. The numerical ratings of symptoms were mainly in accordance with the findings from the qualitative analysis.

    SIGNIFICANCE OF RESULTS: Despair, anxiety, and social withdrawal are common symptoms in depressed patients with incurable cancer, and, therefore, hypothesized as candidate symptom criteria. Other symptom criteria might need adjustment for improvement of relevance in this group of patients.

  • 2.
    Browall, M
    et al.
    Sahlgrens Univ Hosp, Dept Oncol, Clin Trial Unit, SE-41345 Gothenburg, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Strang, S
    Univ Gothenburg, Sahlgrenska Acad, Dept Clin Neurosci & Rehabil, Gothenburg, Sweden.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences. Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Care Sci, Gothenburg, Sweden.
    Henoch, I
    Bracke Diakoni Fdn, Res Unit, Gothenburg, Sweden.
    Health care staff's opinions about existential issues among patients with cancer2010In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 8, no 1, p. 59-68Article in journal (Refereed)
    Abstract [en]

    Objective: The objective of this study was to explore health care staff 's opinions about what existential issues are important to patients with cancer and staff 's responsibility when existential issues are raised by patients. Method: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff 's opinions about patients' important existential questions and, second, about health care staff 's responsibility when existential issues are raised by the patient. The interviews were taperecorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories. Results: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff 's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation. Significance of results: One strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.

  • 3.
    Danielson, Ella
    Tha Sahlgrenska Academy, University of Gothenburg and Department of Health Sciences, Mid Sweden University.
    Patients' participation in end-of-life care: relations to different variables as documented in the patients' records2010In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 8, no 3, p. 247-253Article in journal (Refereed)
    Abstract [en]

    Abstract

    OBJECTIVE: Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables' relation to patients' participation during the last three months in life as documented in patients' records.

    METHOD: The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life.

    RESULTS: This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients.

    SIGNIFICANCE OF RESULTS: The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.

  • 4.
    Eriksson, Gerd
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Health Care Administration, Östersund Municipality, Östersund, Sweden .
    Wahlström Bergstedt, Tina
    Social Service Department, Åre Municipality, Järpen, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    The need for palliative care education, support and reflection among rural nurses and other staff – A quantitative study2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 2, p. 265-274Article in journal (Refereed)
    Abstract [en]

    Objective: Many people now die in community care, and, considering the aging population, all healthcare staff members must be prepared to provide palliative care. Our objectives were to describe the total staff working in different care organizations in a rural community in Sweden and to explore palliative care competence, to describe educational gaps and the need for support and reflection, and to determine whether there are differences in care organizations, professions, age, and gender.Method: A 4-section 20-item questionnaire was distributed to 1686 staff (65% response rate): in nursing homes (n = 395), home care (n = 240), and group residential settings (n = 365). Registered nurses (n = 70), assistant nurses (n = 916), managers (n = 43), and paramedics (n = 33) participated. Descriptive and correlational statistics were employed.Results: Significant differences were found, and 40% (53% among men) lacked palliative care education, Fewer than 50% lacked education in the spiritual/existential areas, and 75% of those aged 20–66 (75% women, 55% men) needed further education. More women than men and staff aged 50–59 had an increased need to reflect.Significance of Results: Our study may provide guidance for managers in rural communities when planning educational interventions in palliative care for healthcare staff and may support direct education with content for specific professions.

  • 5.
    Henoch, Ingela
    et al.
    University of Gothenburg, The Sahlgrenska Academy, Institute of Health and Care Sciences, Gothenburg, Sweden .
    Strang, Susann
    University of Gothenburg, The Sahlgrenska Academy, Institute of Health and Care Sciences, Gothenburg, Sweden .
    Brovall, Maria
    Karolinska Institute, Department of Neurobiology, Care Science and Society, Division of Nursing, Solna, Sweden .
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Caring Sci, SE-40530 Gothenburg, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Caring Sci, SE-40530 Gothenburg, Sweden.
    Development of an existential support training program for healthcare professionals2013In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1701-1709Article in journal (Refereed)
    Abstract [en]

    Objective: Our aim was to describe the developmental process of a training program for nurses to communicate existential issues with severely ill patients.

    Method: The Medical Research Council (MRC) framework for the development and evaluation of complex interventions was used to develop a training program for nurses to communicate about existential issues with their patients. The steps in the framework were employed to describe the development of the training intervention, and the development, feasibility and piloting, evaluation, and implementation phases. The development and feasibility phases are described in the Methods section. The evaluation and implementation phases are described in the Results section.

    Results: In the evaluation phase, the effectiveness of the intervention was shown as nurses' confidence in communication increased after training. The understanding of the change process was considered to be that the nurses could describe their way of communicating in terms of prerequisites, process, and content. Some efforts have been made to implement the training intervention, but these require further elaboration.

    Significance of results: Existential and spiritual issues are very important to severely ill patients, and healthcare professionals need to be attentive to such questions. It is important that professionals be properly prepared when patients need this communication. An evidence-based training intervention could provide such preparation. Healthcare staff were able to identify situations where existential issues were apparent, and they reported that their confidence in communication about existential issues increased after attending a short-term training program that included reflection. In order to design a program that should be permanently implemented, more knowledge is needed of patients' perceptions of the quality of the healthcare staff's existential support.

  • 6.
    Martinsson, Lisa
    et al.
    Department of Radiation Sciences, Umeå University, Umeå, Sweden .
    Axelsson, Bertil
    Department of Radiation Sciences, Unit of Clinical Research Centre–Östersund, Umeå University, Umeå, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Institute of Health and Care Sciences, The Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden .
    Patients' perspectives on information from physicians during palliative chemotherapy: A qualitative study2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 5, p. 495-502Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:

    During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning.

    METHOD:

    A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis.

    RESULTS:

    Three categories were defined during the analytical process: "having a chronic disease," "depending on chemotherapy," and "living with an unpredictable future."

    SIGNIFICANCE OF RESULTS:

    Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.

  • 7.
    Melin Johansson, Titti
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Axelson, Bertil
    Ödling, Gunvor
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    The meaning of quality of life: narrations by patients with incurable cancer in palliative home care2008In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 6, no 3, p. 231-238Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden. METHODS: To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004-2006. Qualitative content analysis was used to interpret the meaning regarding quality of life. RESULTS: Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients' psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team. SIGNIFICANCE OF RESULTS: This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients' quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients' entire life situation and increases quality of life.

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