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  • 1. Berg, Linda
    et al.
    Jenholt Nolbris, Margaretha
    Koinberg, Ingalill
    Melin-Johansson, Christina
    Möller, Anders
    Öhlén, Joakim
    Characterization of cancer support and rehabilitation programmes: a Swedish multiple case study2014In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 10, no 8, p. 1-7Article in journal (Refereed)
    Abstract [en]

    Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.

  • 2.
    Browall, M.
    et al.
    Karolinska Inst, Div Nursing, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden.
    Henoch, I.
    Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Care Sci, Gothenburg, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Strang, S.
    Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Care Sci, Gothenburg, Sweden.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Existential encounters: nurses' descriptions of critical incidents in cancer care at end of life2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no S1, p. S35-S35Article in journal (Other academic)
  • 3.
    Browall, M
    et al.
    Univ Skovde, Sch Hlth & Educ, Skovde, Sweden.
    Henoch, I
    Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Care Sci, SE-40530 Gothenburg, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Strang, S
    University of Gothenburg, The Sahlgrenska Academy, Institute of Health and Care Sciences, Göteborg, Sweden.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. University of Gothenburg, The Sahlgrenska Academy, Institute of Health and Care Sciences, Göteborg, Sweden.
    Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care2014In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 18, no 6, p. 636-644Article in journal (Refereed)
    Abstract [en]

    Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress. Aim: The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer. Methods and sample: Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured. Results: Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live. Conclusions: This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.

  • 4.
    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.

  • 5.
    Danielson, Ella
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Modanloo, Mahnaz
    Golestan University of Medical Sciences, Gorgan, Iran.
    Adherence to treatment in patients with chronic diseases: From alertness to persistence2019In: International Journal of Community Based Nursing and Midwifery, ISSN 2322-2476, Vol. 7, no 4, p. 248-257Article in journal (Refereed)
    Abstract [en]

    Background: Adherence to treatment is a process that begins with alertness about the disease and has to end with staying in treatment. It is a concern to all health care disciplines. The aim of this study was to explore the experience of adherence to treatment patients with chronic diseases. Methods: This qualitative study was conducted during a period of 6 months in Golestan province in Iran in 2017. In-depth semi-structured interviews were done with a purposive sample of 15 patients with chronic disease (i.e. Chronic renal failure (CRF), Hypertension (HTN), Multiple sclerosis (MS) and Diabetes). Data were analyzed using qualitative content analysis in MAXQDA Software. Results: The analysis of the data in this study led to the development of ten subthemes and four themes emerged as follows: motivation, cohesion, commitment and empowerment which are necessary components for adherence to treatment in patients. “Moving from alertness to persistence” emerged as the main theme. Conclusion: The findings of the study offer helpful insights into the concept of adherence to treatment and its components for health care providers, which can be used to develop the best possible care plan and may help health care providers to support the patients to have an active role for following treatment rather than just doing it. 

  • 6.
    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.

  • 7.
    Haas, B. K.
    et al.
    School of Nursing, The University of Texas at Tyler, 3900 University Blvd., Tyler, TX, United States.
    Hermanns, M.
    School of Nursing, The University of Texas at Tyler, 3900 University Blvd., Tyler, TX, United States.
    Melin-Johansson, Christina
    Institute of Health and Care Sciences, The Sahlgrenska Academy, University of Gothenburg.
    Case study of persons with cancer participating in a community-based exercise program: An exploration of meaning and change2016In: Qualitative Report, ISSN 1052-0147, Vol. 21, no 8, p. 1409-1424, article id 5Article in journal (Refereed)
    Abstract [en]

    Increasingly, research supports the importance of incorporating exercise into the cancer care paradigm. While quantitative studies have substantiated the significant effects of exercise on physical functioning, the individual’s perspective of participating in an exercise program has rarely been considered. The purpose of this study was to explain the impact of a community based exercise program on the lives of persons with cancer and their caregivers. Based on Bandura’s Social Cognitive Theory, a single explanatory case study with multiple embedded units of analyses was conducted. Interviews were conducted with 10 individuals representing participants with cancer, their caregivers, and health care providers. Data were analyzed using Yin’s case study method. Four themes emerged (Sense of Community, Building Relationships, Bridging the Gap, and Living Life Abundantly), which identified the unique characteristics of this community based exercise program. Incorporation of these characteristics into program planning may benefit other communities that aspire to offer a similar program to improve patient outcomes and enhance quality of life. © 2016: Barbara K. Haas, Melinda Hermanns, Christina Melin-Johansson, and Nova Southeastern University.

  • 8.
    Hagelin, Carina Lundh
    et al.
    Sophiahemmet Univ, Stockholm; Stockholms Sjukhem Fdn, Stockholm; Karolinska Inst, Dept Learning Informat Management & Eth, Stockholm.
    Johansson Melin, Christina [Titti]
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Univ Gothenburg, Sahlgrenska Acad, Gothenburg.
    Henoch, Ingela
    Univ Gothenburg, Sahlgrenska Acad, Gothenburg; Angereds Local Hosp, Gothenburg.
    Bergh, Ingrid
    Univ Skövde, Sch Hlth & Educ, Skövde.
    Ek, Kristina
    Univ Skövde, Sch Hlth & Educ, Skövde.
    Hammarlund, Kina
    Univ Skövde, Sch Hlth & Educ, Skövde.
    Prahl, Charlotte
    Ersta Skondal Univ Coll, Stockholm.
    Strang, Susann
    Univ Gothenburg, Sahlgrenska Acad, Gothenburg.
    Westin, Lars
    Univ Skövde, Sch Hlth & Educ, Skövde.
    Osterlind, Jane
    Ersta Skondal Univ Coll, Stockholm.
    Browall, Maria
    Univ Skövde, Sch Hlth & Educ, Skövde.
    Factors influencing attitude toward care of dying patients in first-year nursing students2016In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 22, no 1, p. 28-36Article in journal (Refereed)
    Abstract [en]

    Aim: To describe Swedish first-year undergraduate nursing students' attitudes toward care of dying patients. Possible influences such as age, earlier care experiences, care education, experiences of meeting dying patients and place of birth were investigated. Method: The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) was used in six universities. Descriptive statistics and regression analysis were used. Results: Some 371 students (67.3%) reported overall positive attitude toward caring for dying patients (total mean FATCOD 119.5, SD 10.6) early in their first semester. Older students, students with both earlier care experience and earlier education, those with experience of meeting a dying person, and students born in Sweden reported the highest scores, a more positive attitude. Conclusion: Age, earlier care experience and education, experiences of meeting a dying person and place of birth seems to affect students' attitudes toward care of the dying and need to be considered among nursing educators.

  • 9.
    Henoch, I
    et al.
    Sahlgrenska Academy at Göteborg University.
    Danielsson, E
    Sahlgrenska Academy at Göteborg University.
    Strang, S
    Sahlgrenska Academy at Göteborg University.
    Browall, M
    Skövde univ..
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences. Göteborgs universitet.
    Patients', family members' and healthcare staffs' opinions about existential issues as a base for an educational intervention2011In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368, Vol. 1, no 1Article in journal (Refereed)
  • 10.
    Henoch, Ingela
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, SE-405 30 Gothenburg, Sweden .
    Browall, Maria
    Department of Neurobiology, Division of Nursing, Care Science and Society, Karolinska Institutet, Stockholm, Sweden .
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, SE-405 30 Gothenburg, Sweden .
    Udo, Camilla
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Johansson Sundler, Annelie
    School of Life Sciences, University of Skövde, Sweden .
    Björk, Maria
    School of Life Sciences, University of Skövde, Sweden .
    Ek, Kristina
    School of Life Sciences, University of Skövde, Sweden .
    Hammarlund, Kina
    School of Life Sciences, University of Skövde, Sweden .
    Bergh, Ingrid
    School of Life Sciences, University of Skövde, Sweden .
    Strang, Susann
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457, SE-405 30 Gothenburg, Sweden .
    The Swedish Version of the Frommelt Attitude Toward Care of the Dying Scale: Aspects of Validity and Factors Influencing Nurses' and Nursing Students' Attitudes.2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 1, p. E1-E11Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language. OBJECTIVES:: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients. METHODS:: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used. RESULTS:: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients. CONCLUSIONS:: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients. IMPLICATION FOR PRACTICE:: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.

  • 11.
    Henoch, Ingela
    et al.
    Göteborgs universitet, Sahlgrenska akademin, Institutionen för vårdvetenskap och hälsa.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Göteborgs universitet, Sahlgrenska akademin, Institutionen för vårdvetenskap och hälsa.
    Strang, Susann
    Göteborgs universitet, Sahlgrenska akademin, Institutionen för vårdvetenskap och hälsa.
    Browall, Maria
    Karolinska institutet,Department of Neurobiology, Division of Nursing, Care Science and Society.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Training Intervention for Health Care Staff in the Provision of Existential Support to Patients With Cancer: A Randomized, Controlled Study2013In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 46, no 6, p. 785-794Article in journal (Refereed)
    Abstract [en]

    CONTEXT:

    When a patient receives a cancer diagnosis, existential issues become more compelling. Throughout the illness trajectory, patients with cancer are cared for in oncology wards, by home care teams or in hospices. Nurses working with these patients are sometimes aware of the patients' existential needs but do not feel confident when discussing these issues.

    OBJECTIVES:

    To determine the effects of a training intervention, where the focus is on existential issues and nurses' perceived confidence in communication and their attitude toward caring for dying patients.

    METHODS:

    This was a randomized, controlled trial with a training intervention comprising theoretical training in existential issues combined with individual and group reflection. In total, 102 nurses in oncology and hospice wards and in palliative home care teams were randomized to a training or non-training group. Primary outcomes, confidence in communication, and attitude toward the care of dying patients were measured at baseline, immediately after the training, and five to six months later.

    RESULTS:

    Confidence in communication improved significantly in the training group from baseline (before the training) to both the first and second follow-up, that is, immediately after the training and five months later. The attitude toward caring for the dying did not improve in the training group.

    CONCLUSION:

    This study shows that short-term training with reflection improves the confidence of health care staff when communicating, which is important for health care managers with limited resources. Further studies are needed to explore how patients experience the communication skills of health care staff after such training.

  • 12.
    Henoch, Ingela
    et al.
    University of Gothenburg.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. University of Gothenburg.
    Bergh, Ingrid
    University of Skövde.
    Strang, Susann
    University of Gothenburg.
    Ek, Kristina
    University of Skövde.
    Hammarlund, Kina
    University of Skövde.
    Lund Hagelin, Carina
    Sophiahemmet University.
    Westin, Lars
    University of Skövde.
    Österlind, Jane
    Ersta Sköndal University College and Ersta Hospital.
    Browall, Maria
    University of Skövde.
    Undergraduate nursing students' attitudes and preparedness toward caring for dying persons – a longitudinal study2017In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 26, p. 12-20Article in journal (Refereed)
    Abstract [en]

    Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life care. A longitudinal study was performed with 117 nursing students at six universities in Sweden. The students completed the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) questionnaire at the beginning of first and second year, and at the end of third year of education. After education, the students completed questions about how prepared they felt by to perform end-of-life care. The total FATCOD increased from 126 to 132 during education. Five weeks' theoretical palliative care education significantly predicted positive changes in attitudes toward caring for dying patients. Students with five weeks' theoretical palliative care training felt more prepared and supported by the education to care for a dying patient than students with shorter education. A minority felt prepared to take care of a dead body or meet relatives.

  • 13.
    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.

  • 14.
    Høgsnes, Linda
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Norbergh, Karl-Gustaf
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Institute of Health and Care Sciences, The Salhlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Healthcare professionals' documentation in nursing homes when caring for patients with dementia in end of life - a retrospective records review2016In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 11-12, p. 1663-1673Article in journal (Refereed)
    Abstract [en]

    Aims and objectives: To investigate how end-of-life care was described by healthcare professionals in records of deceased persons affected by dementia who had lived in Swedish nursing homes. Background: In the final stage of dementia disease, the persons are often cared for at nursing homes and they often die there. The research concurs that a palliative approach to end-of-life care is essential but there are still some limitations regarding research about what constitutes the end-of-life care provided to persons affected by dementia in Sweden. Design: Descriptive qualitative method with a retrospective approach. Method: Nursing records (n = 50) and medical records (n = 50) were retrospectively reviewed in two nursing homes. The analysis was conducted using deductive and inductive content analysis. Three phases of The Liverpool Care Pathway; Initial assessment, Continuous assessment and Follow-up, were used deductively to first sort the text in the records, then the text in each phase was further analysed with inductive content analysis. Four categories and 11 subcategories described the content in the records. Results: The end-of-life care was described in the healthcare records based on such categories as decision-making, participation and communication, assessment and prevention of symptom and following up after the residents had died. Conclusion: Paticularly, physical symptoms were documented and, to a lesser degree, psychological or existential/spiritual needs. Relevance to clinical practice: Healthcare professionals must have a holistic view of the person affected by dementia during the end-of-life care and, according to this study, more focus must be placed on their psychosocial and existential needs in the documentation of end-of-life care.

  • 15.
    Høgsnes, Linda
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Norbergh, Karl-Gustaf
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Salhlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Gothanburg, Sweden .
    The existential life situations of spouses of persons with dementia before and after relocating to a nursing home2014In: Aging & Mental Health, ISSN 1360-7863, E-ISSN 1364-6915, Vol. 18, no 2, p. 152-160Article in journal (Refereed)
    Abstract [en]

    Objectives: The aim was to describe the existential life situations of spouses who care for persons with dementia, before and after relocation to nursing homes.Method: This was a qualitative study among 11 spouses of persons with dementia, recruited via purposeful sampling. Data were collected through interviews and analysed with interpretive content analysis.Results: Before the relocation to nursing homes, the spouses' existential life situations were characterized by feelings of shame and guilt, being isolated in the home. Spouses were also exposed to psychological threats, physical violence, and had feelings of placing one's own needs last. After the relocation, spouses described feelings of guilt and freedom, living with grief and thoughts of death, feelings of loneliness in the spousal relationship, and striving for acceptance despite a lack of completion.Conclusion: The existential life situation of spouses of persons with dementia is about being in limit situations which changes when the ill person relocates to a nursing home. This is important knowledge for health care staff to bear in mind at nursing homes when encountering spouses.

  • 16.
    Høgsnes, Linda
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Norbergh, Karl-Gustaf
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Melin Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    The Shift in Existential Life situation of Adult Children to Parents with Dementia Relocated to Nursing Homes2016In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 10, p. 122-130Article in journal (Refereed)
    Abstract [en]

    Background:

    Previous research describes spouses and adult children of people with dementia as a homogeneous group using one term: family caregivers. Recent research shows that the needs and experiences of spouses and adult children differ, therefore they cannot be studied as a homogeneous group.

    Aims:

    The aim of the study was to describe the shift in existential life situations of adult children of a parent with dementia relocated to nursing homes.

    Design:

    This is a qualitative study with an interpretive approach.

    Methods:

    Face-to-face interviews were held with 11 adult children aged 48-65 years. The interviews lasted 30–60 minutes and data were analysed using interpretive content analysis.

    Findings:

    The adult children described how they experienced their life situation before and after their parents’ relocation. Before relocation they described feelings of powerlessness, loneliness in their responsibilities, loss and guilt. After relocation they had feelings of freedom, ongoing responsibility, living with loss and having a new relationship with death.

    Conclusion:

    The most important finding in our study was that adult children developed a different relationship with death than before the parent became affected by dementia. It is essential that healthcare staff understand and address the adult children’s existential life situations and the suffering they are experiencing. Healthcare staff need to be conscious about adult children’s needs for support to address their existential life situations before and after their parents relocate to nursing homes.

  • 17.
    Høgsnes, Linda
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Norbergh, Karl-Gustav
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Ersta Sköndal Bräcke Univ Coll.
    "Being in Between" Nurses' Experiences When Caring for Individuals With Dementia and Encountering Family Caregivers' Existential Life Situations2019In: Research in Gerontological Nursing, ISSN 1940-4921, E-ISSN 1938-2464, Vol. 12, no 2, p. 91-98Article in journal (Refereed)
    Abstract [en]

    The focus of the current study was to explore nursing home staff's understanding and how they approach family caregivers' existential life situations when caring for individuals with dementia. A qualitative interview study was conducted with 20 nursing staff in two nursing homes in northern Sweden. Face-to-face interviews were analyzed using interpretive content analysis. One overarching theme with three themes and nine subthemes comprised the findings. The themes describe how nursing staff were "in between" when they cared for individuals with dementia and encountered family caregivers' existential life situations. Nurses acted as advocates and safeguarded family caregivers via dialogues and interactions. Nurses were supporters and by"being in between"they eased family caregivers'feelings of powerlessness in relation to dying and death."Being in between" may give nurses a deeper understanding of family caregivers'existential needs, thus increasing family caregivers' well-being.

  • 18.
    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.

  • 19.
    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.

  • 20.
    Melin Johansson, Titti
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Axelsson, Bertil
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Caregivers' perceptions about terminally ill family members' quality of life2007In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 16, no 4, p. 338-345Article in journal (Refereed)
    Abstract [en]

    Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.

  • 21.
    Melin Johansson, Titti
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Axelsson, Bertil
    Östersunds sjukhus. Kirurgkliniken.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Living with incurable cancer at the end of life - patients perceptions on quality of life2006In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 29, no 5, p. 391-399Article in journal (Refereed)
    Abstract [en]

    This study describes incurably ill cancer patients' perceptions of the quality of life at the end of life. Purposeful sampling was used to get as comprehensive descriptions as possible about quality of life. Five patients participated in repeated focus groups. Content analysis showed that the patients emphasized what they could perform and enjoy in daily life, not their shortcomings. Five themes were developed: "valuing ordinariness in life," "maintaining a positive life," "alleviated suffering," "significant relations," and "managing life when ill." The themes describe that the patients could participate in daily and social life despite cancer. Relation with family and palliative team deepened during the progress of illness in such that a resonance developed in communication. Other important findings were that patients' memories helped them to maintain a positive life and that the patients used individual strategies to relieve pain by emotional and physical distractions. For the patients, managing life as ill meant taking actions with creative thinking in solving problems as a way to cope and achieve quality of life. These positive findings from the focus groups have led to continued research regarding how patients with incurable cancer perceive quality of life.

  • 22.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    A Randomised Controlled Study Including Health Care Staff Caring for Patients in Cancer at the End of Life: Results from an Educational Intervention on Existential Support2013Conference paper (Refereed)
  • 23.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Cancer patients perceptions on quality of life: Cancer patients perceptions on quality of life2006Conference paper (Refereed)
  • 24.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Changed Attitudes among Surgical Nurses Caring for Dying Patients in Cancer - A Pilot Study of an Educational Intervention on Existential Issues2013Conference paper (Refereed)
  • 25.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Conversion factor for morphine when changing from oral to parental administration.2001In: : Conversion factor for morphine, 2001Conference paper (Refereed)
  • 26.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Kvalificerad hemsjukvård 2010In: Hemsjukvård / [ed] Eva Drevenhorn, Lund: Studentlitteratur AB, 2010Chapter in book (Refereed)
  • 27.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Parents' experiences of palliative care and support when their child is dying2015Conference paper (Refereed)
  • 28.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Patienters, närståendes och vårdpersonals uppfattningar om existentiella frågor som en bas för ett pedagogiskt projekt2012Conference paper (Refereed)
  • 29.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Patients’, family members’ and healthcare staffs’ opinions about existential issues as a base for an educational intervention2011Conference paper (Refereed)
  • 30.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Significant improvement in cancer after designation to a palliative homecare team2009Conference paper (Refereed)
  • 31.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    The Swedish Version of the Frommelt Attitude Toward Care of the Dying Scale: Aspects of Validity and Factors Influencing Nurses' and Nursing Students' Attitudes2014In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 37, no 1, p. e1-e11Article in journal (Refereed)
    Abstract [en]

    Background: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language.Objectives: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients.Methods: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used.Results: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients.Conclusions: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients.Implication for Practice: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.

  • 32.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Vård i livets slutskede2010In: Hemsjukvård / [ed] Eva Drevenhorn, Lund: Studentlitteratur AB, 2010Chapter in book (Refereed)
  • 33.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Vårdpersonalens uppfattningar om existentiella frågor hos patienter med cancer.2010Conference paper (Refereed)
  • 34.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Axelson, Bertil
    Gaston-Johansson, F
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team2010In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, no 2, p. 243-250Article in journal (Other academic)
    Abstract [en]

    The aims of this study were to describe and compare quality of life (QOL) before and after designation to a palliative homecare team (PHT) in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global QOL. We measured patients� QOL one week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (AQEL). Of 163 eligible patient 63 participated without attrition. Patients� QOL improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (p=.009), nausea (p=.008), anxiety (p=.007), getting hold of staff (p=.000), received care (p=.003) and global QOL (p=.023). Depression/low in mood (r=.55) and meaningfulness (r=.70) associated to global QOL. Furthermore, pain (p=.028) and meaningfulness (p=.028) predicted global QOL. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global QOL.

  • 35.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Axelsson, Inge
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Östersund Hosp, Östersund, Sweden.
    Jonsson Grundberg, Marie
    Östersund Hosp, Östersund, Sweden.
    Hallqvist, Frida
    Östersund Hosp, Östersund, Sweden.
    When a child dies - parents’ experiences of palliative care: An integrative literature review2014In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 29, no 6, p. 660-669Article in journal (Refereed)
    Abstract [en]

    The aim of this integrative review was to increase knowledge about parents' experiences of palliative care when their child is dying or has died due to illness using Whittemore and Knafl (2005) analysis process. Computerized databases were used to search the literature. Nine papers met the inclusion criteria. The analysis resulted in five categories: genuine communication, sincere relationships, respect as an expert, and alleviation of suffering and need of support, including 15 subcategories. Health professionals need education to provide high-quality pediatric palliative care. They especially need training concerning existential issues, and further studies need to be performed.

  • 36.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Day, Annika
    Axelsson, Inge
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Forslund, Ingela
    Supportive interventions and their impact on pediatric health care professionals’ emotional well-being: A systematic literature review2014In: Clinical Nursing Studies, ISSN 2324-7940, E-ISSN 2324-7959, Vol. 2, no 4, p. 60-73Article in journal (Refereed)
    Abstract [en]

    The aim of this systematic literature review was to describe interventions supporting pediatric health care professionals to manage emotional strain when caring for children at the end-of-life. The review included five quantitative studies. Two categories were identified within the results: 1) Supportive interventions with the subcategories of educational interventions, peer support for grief, intensive training course, peer supported storytelling, and debriefing sessions; and 2) Effects of interventions, with the subcategories of increased understanding, increased confidence, creating meaning, grief management, and sense of well-being. Interventions that combine education and dialogue seem supportive, but debriefing might have the most impact on health care professionals’ emotional well-being. Future research should focus on deepening the understanding of the meaning of education and dialogue for health care professionals, further investigate the effects of debriefing, and focus on educational training around existential issues.

  • 37.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Eriksson, Ulrika
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Segerbäck, Inger
    Geriatric and Rehabilitation Unit, Ystad Hospital, Ystad, Sweden.
    Boström, Sara
    Homecare, Östhammar Municipality, Alunda, Sweden.
    Reflections of older people living in nursing homes2014In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 26, no 1, p. 33-39Article in journal (Refereed)
    Abstract [en]

    Aim

    To explore experiences of ageing in older people living in nursing homes, based on the gerotranscendence theory.

    Method

    Interviews were held with 14 people aged between 80 and 96 years. The results were analysed using content analysis.

    Findings

    The findings were divided into three categories: the self, the cosmic dimension, and social and personal relationships. These three categories were underpinned by eight subcategories. Most participants described improved knowledge about themselves, decreased concern about body and appearance, acceptance and appreciation of life, and less regard for social norms. A fewer participants described a greater affinity with past generations, or thought that the borders between past and present had become blurred.

    Conclusion

    This study provides a better understanding of how people experience old age. It also indicates how healthcare professionals could apply the gerotranscendence theory of ageing as a conversation model to enable care to be adjusted according to older people's wishes.

  • 38.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Henoch, I
    Strang, S
    Browall, M
    Living in the presence of death: An integrative literature review of relatives’ important existential concerns when caring for a severely ill family member2012In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 6, p. 1-12Article in journal (Refereed)
    Abstract [en]

    AIM:

    The aim of this study was to explore relatives' existential concerns when caring for a seriously ill family member as well as to describe interventions that meet these concerns.

    METHODS:

    In this integrative literature review we assessed and classified 17 papers, 12 qualitative and 5 quantitative. Literature was sought in the databases Cinahl, PubMed, Psykinfo and Web of Science in September 2009 and in March 2010. Search terms used in different combinations were: family, family caregiver, next of kin, relatives, palliative, palliative care, end-of-life care, existential, spirit*. Data were redrawn from the papers results/findings, and synthesized into a new descriptive content.

    RESULTS:

    The results were categorized from 13 papers exploring relatives' important existential concerns and 4 papers describing interventions aimed to support them in the existential area. A majority of the reviewed papers had been written in Sweden and concerned relatives of patients with cancer. One overarching theme, living in the presence of death, and three categories: responses to life close to death; support when death is near; and beyond the presence of death were created.

    CONCLUSION:

    There is an urgent demand for large-scale studies using accurate methodology, as well as a need to design qualified investigations regarding the effects of various interventions, and to determine which interventions are the most effective in supporting relatives who experience existential distress manifested physically and/or psychologically. There is also a considerable demand for educational interventions among professionals in various healthcare settings to increase their knowledge regarding existential concerns among relatives.

  • 39.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Högsnäs, Linda
    Hemsjukvården, Bergs kommun, Jämtland.
    Dokumentation vid vård av patienter med demenssjukdom i palliativt skede på särskilda boenden – en retrospektiv studie2010Conference paper (Refereed)
    Abstract [sv]

    Bakgrund: Slutskedet av en demenssjukdom kan vara svårt att fastställa, och många patienter dör pga. komplikationer av sin sjukdom. Att dokumentera att vården är palliativ hos patienter med demenssjukdom är ovanligt för såväl läkare som sjuksköterskor. Detta kan bero på att det palliativa förloppet är långt och inte liknar det förlopp som är vanligt hos t.ex. patienter med cancer.

    Syfte: Beskriva hur legitimerad personal på särskilda boenden dokumenterar vården av personer med demenssjukdom i ett sent palliativt skede. En retrospektiv journalstudie i vilken omvårdnadsjournaler (n=50) och medicinska journaler (n=50) till avlidna patienter granskades med hjälp av en granskningsmall baserad på Liverpool Care Pathway (LCP). Data analyserades med manifest innehållsanalys.

    Metod: Efter tillstånd från etikprövningsnämnden i Linköping samkörs nu data från palliativregistret med befolkningsregistret och patient-registret. Syftet är att få fram antalet dödsfall per kommun respektive per sjukhus under 2009 (= nämnare). Utifrån inkomna registreringar i Svenska Palliativregistret från olika kommuner och sjukhus (=täljare) kan vi sedan beräkna täckningsgraden per kommun och per sjukhus. genom att antalet inkomna registreringar från specialiserade palliativa enheter (hemsjukvårdsteam, hospice, slutenvårdsplatser) varit tämligen oförändrade senaste åren kan vi anta att vi uppnått en mättnad, dvs att cirka 90 % av dödsfallen från dessa enheter registreras. Utifrån detta kan vi beräkna täckningsgraden även för kommunala vårdformer (särskilda boenden + korttidsboende).

    Resultat: Tre kategorier formulerades utifrån analysen: Inledande bedömning, Sammanhängande bedömning och Uppföljning. Sjuksköterskor och läkare visste att patienten med demenssjukdom var döende, men ställningstagande till palliativ vård togs inte alltid. Uteslutande dokumenterades fysiska symptom och i mindre grad psykiska, sociala, eller existentiella/ andliga behov. Att närstående hade fått information om det palliativa skedet var väl dokumenterat.

    Diskussion: Utifrån dokumentationen var det svårt att få en helhetsbild av patientens situation. Detta för att alla åtgärder inte dokumenterats samt att granskningsmallen var begränsad då inte alla delar som krävs för att en aktiv helhetsvård ska synliggöras finns med. Den helhetsvård som patienter med demenssjukdom är i behov i ett palliativt skede tydliggörs inte i dokumentationen vid särskilda boenden trots att sjuksköterskor och läkare vet att patienten är döende.

  • 40.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Lindström, Lisa
    Uski, Rickard
    Björkman-Randström, Kerstin
    “The elephant on the table”: spirituality at the workplace in healthcare – a mixed studies review2016Article in journal (Refereed)
  • 41.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Palmqvist, Rebecca
    Region Jämtland Härjedalen, Östersund.
    Rönnberg, Linda
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Clinical intuition in the nursing process and decision-making: A mixed studies review2017In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 26, no 23-24, p. 3936-3949Article in journal (Refereed)
    Abstract [en]

    Aims and objectives

    To review what is characteristic of registered nurses’ intuition in clinical settings, in relationships and in the nursing process.

    Background

    Intuition is a controversial concept and nurses believe that there are difficulties in how they should explain their nursing actions or decisions based on intuition. Much of the evidence from the body of research indicates that nurses value their intuition in a variety of clinical settings. More information on how nurses integrate intuition as a core element in daily clinical work would contribute to an improved understanding on how they go about this. Intuition deserves a place in evidence-based activities, where intuition is an important component associated with the nursing process.

    Design

    An integrative review strengthened with a mixed-studies review.

    Methods

    Literature searches were conducted in the databases CINAHL, PubMed and PsycINFO, and literature published 1985–2016 were included. The findings in the studies were analysed with content analysis, and the synthesis process entailed a reasoning between the authors.

    Results

    After a quality assessment, 16 studies were included. The analysis and synthesis resulted in three categories. The characteristics of intuition in the nurse's daily clinical activities include application, assertiveness and experiences; in the relationships with patients’ intuition include unique connections, mental and bodily responses, and personal qualities; and in the nursing process include support and guidance, component and clues in decision-making, and validating decisions.

    Conclusion

    Intuition is more than simply a “gut feeling,” and it is a process based on knowledge and care experience and has a place beside research-based evidence. Nurses integrate both analysis and synthesis of intuition alongside objective data when making decisions. They should rely on their intuition and use this knowledge in clinical practice as a support in decision-making, which increases the quality and safety of patient care.

    Relevance to clinical practice

    We find that intuition plays a key role in more or less all of the steps in the nursing process as a base for decision-making that supports safe patient care, and is a validated component of nursing clinical care expertise.

  • 42.
    Melin-Johansson, Christina
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. University of Gothenburg, Göteborg, Sweden .
    Öhlén, Joakim
    University of Gothenburg, Göteborg, Sweden; Ersta Sköndal University College, Stockholm, Sweden .
    Koinberg, Ingalill
    University of Gothenburg, Göteborg, Sweden; Sahlgrenska University Hospital, Gothenburg, Sweden .
    Berg, Linda
    University of Gothenburg, Göteborg, Sweden .
    Jenholt Nolbris, Margareta
    University of Gothenburg, Göteborg, Sweden; Queen Silvia Children’s Hospital, Göteborg, Sweden .
    The Recovery Process When Participating in Cancer Support and Rehabilitation Programs in Sweden2015In: Global Qualitative Nursing Research, ISSN 2333-3936, Vol. 2Article in journal (Refereed)
    Abstract [en]

    The aim was to illuminate the meaning of participating in support and rehabilitation programs described by people diagnosed with cancer. Nineteen persons were interviewed in focus groups and face-to-face. Data were analyzed with a qualitative phenomenological hermeneutical method for researching lived experiences. Interpretation proceeded through three phases: naïve reading, structural analysis, and comprehensive understanding. Three themes were disclosed: receiving support for recovery when being most vulnerable, recapturing capabilities through supportive activities, and searching to find stability and well-being in a changed life situation. Participating in the programs was an existential transition from living in an unpredictable situation that was turned into something meaningful. Recovery did not mean the return to a state of normality; rather, it meant a continuing recovery from cancer treatments and symptoms involving recapturing capabilities and searching for a balance in a forever changed life. This study provides new insights about the experiences of participating in cancer support and rehabilitation programs.

  • 43. Rafii, Forough
    et al.
    Fatemi, Naima S
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Modanloo, Mahnaz
    Compliance to treatment in patients with chronic illness: A concept exploration2014In: Iranian Journal of Nursing and Midwifery, ISSN 1735-9066, Vol. 19, no 2, p. 159-67Article in journal (Refereed)
    Abstract [en]

    Background: Patients' compliance to treatment is an important indicator for evaluating the successful management in chronic illnesses. Despite the fact an applicable definition of compliance is required to suitable intervention and research, this concept is not clear and there is no consensus concerning its meaning, definition, and measurement. The aim of this study was to explore the concept of compliance and to formulate a working definition. Materials and Methods: Theoretical phase of Schwartz-Barcott and Kim's Hybrid Model of concept analysis was used to analyze the concept of compliance. Data were collected by using literature reviews. Medline, CINAHL, Ovid, Elsevier, Pro Quest and Blackwell databases were searched from 1975 to 2010 using the keywords "Compliance," "Non-compliance," "Adherence," and "Concordance." Articles published in English were selected if they included adult patients with chronic illnesses and reported attributes of compliance; 23 such relevant articles were chosen. Results: The attributes of compliance included patient obedience, ability to implement medical advice, flexibility, responsibility, collaboration, participation, and persistence in implementing the advices. Antecedents are organized into two interacting categories: Internal factors refer to the patient, disease, and treatment characteristics and external factors refer to the healthcare professionals, healthcare system, and socioeconomic factors. Compliance may lead to desirable and undesirable consequences. A working definition of compliance was formulated by comparing and contrasting the existing definitions with regard to its attributes which are useful in clinical practice and research. Conclusions: This finding will be useful in clinical practice and research. But this working definition has to be tested in a clinical context and a broad view of its applicability has to be obtained.

  • 44.
    Sjöström, Rita
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Johansson Melin, Christina [Titti]
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Asplund, Ragnar
    Jamtland Cty Council, Res & Dev Unit, Ostersund, Sweden.
    Alricsson, Marie
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Barriers to and possibilities of returning to work after a multidisciplinary rehabilitation programme. A qualitative interview study2011In: Work: A journal of Prevention, Assesment and rehabilitation, ISSN 1051-9815, E-ISSN 1875-9270, Vol. 39, no 3, p. 243-250Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this qualitative study was to explore experiences of sick-listed persons of not returning to work during a six-year period after participation in an extensive multidisciplinary rehabilitation programme. Participants: The study comprised ten participants with musculoskeletal disorders, mainly neck and back pain. Methods: Semi-structured interviews were conducted and analysed by manifest content analysis. Results: This led to identification of three primary categories and six sub-categories, which described the participants' experiences of barriers to and possibilities of returning to work, and indicated what strategies they used to cope with everyday life. The participants described that the main barriers to returning to work were pain and somatic symptoms, fatigue, and not fulfilling the work requirements. Participants considered physical activity a key factor in coping with pain. Most participants thought that they had residual work ability, and could utilise this if they could get a modified job adapted to their own capacity. Conclusions: Our study highlights the importance of utilising residual working ability at workplaces. Finding flexible work possibilities requires an understanding and supportive attitude on the part of both the employer and the social insurance office.

  • 45.
    Starlander, Jan
    et al.
    Department of Internal Medicine, Östersund Hospital.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences. Göteborgs universitet.
    Jonsson, Håkan
    Axelsson, Bertil
    Oral-parenteral conversion factor for morphine in palliative cancer care: a prospective randomized crossover pilot study2011In: Pain Research and Treatment, ISSN 2090-1542, E-ISSN 2090-1550, Vol. 2011, article id 504034Article in journal (Refereed)
    Abstract [en]

    Objective. This pilot study clinically tests whether a conversion factor of 2 to 1 is appropriate when changing from oral to parenteral morphine administration in the treatment of cancer-related nociceptive pain and calculates the size of an adequately powered future study. Methods. Eleven outpatients with incurable cancer and well-controlled nociceptive pain were randomly assigned to either intravenous or subcutaneous morphine using half the previous oral 24-hour dose. Each group crossed over after the first three-day period. Serum concentrations of morphine and its metabolites were monitored as well as intensity of pain. Results. Oral to subcutaneous and oral to intravenous quotas of morphine concentrations were approximately 0.9. Subcutaneous to intravenous morphine quotas were 1. Conclusions. The conversion factor of 2 to 1 seems to be a reasonable average but with an obvious need for individual adjustments. Concurrent medications and substantially higher doses of morphine could potentially affect the appropriate conversion factor. An adequately powered study to validate these findings would need at least 121 patients.

  • 46.
    Strang, Susann
    et al.
    Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Box457, SE-405 30 Gothenburg, Sweden.
    Henoch, Ingela
    Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Box457, SE-405 30 Gothenburg, Sweden.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Sahlgrenska Academy, Institute of Health and Care Sciences, University of Gothenburg, Box457, SE-405 30 Gothenburg, Sweden.
    Browall, Maria
    Department of Neurobiology, Care Science and Society, Division of Nursing, Karolinska Institute, Solna, Sweden .
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Communication about existential issues with patients close to death-nurses' reflections on content, process and meaning2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 5, p. 562-568Article in journal (Refereed)
    Abstract [en]

    ObjectiveEncountering dying patients with implicit existential questions requires the nurses to have positive and comfortable attitude to talking about existential issues. This paper describes the nurses' reflections on existential issues in their communication with patients close to death. MethodsNurses (n=98) were recruited from a hospital, hospices and homecare teams. Each nurse participated in five group reflection sessions that were recorded, transcribed and analysed using qualitative content analysis. ResultsThree domains and nine themes emerged. The content domain of the existential conversation covered living, dying and relationships. The process domain dealt with using conversation techniques to open up conversations, being present and confirming. The third domain was about the meaning of existential conversation for nurses. The group reflections revealed a distinct awareness of the value of sensitivity and supportive conversations. ConclusionThis study supports the assertion that experience of talking about existential issues and supporting environment make nurses comfortable when counselling patients close to death. It was obvious from this study that having the courage to be present and confirming, having time and not trying to solve' every existential problem were the most important factors in conversations with the patients close to death. Copyright (c) 2013 John Wiley & Sons, Ltd.

  • 47.
    Udo, Camilla
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, Gothenburg, Sweden.
    Henoch, Ingela
    Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, Gothenburg, Sweden.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Surgical nurses’ work-related stress when caring for severely ill and dying patients with cancer after participating in an educational intervention on existential issues2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 5, p. 546-553Article in journal (Refereed)
    Abstract [en]

    AIM:

    The aim of this study was to describe surgical nurses' perceived work-related stress in the care of severely ill and dying patients with cancer after participating in an educational intervention on existential issues.

    METHODS AND SAMPLE:

    This article reports a mixed methods pilot study of an education programme consisting of lectures and supervised discussions conducted in 2009-2010 in three surgical wards in a county hospital in Sweden. The concurrent data collections consisted of repeated interviews with eleven nurses in an educational group, and questionnaires were distributed to 42 nurses on four occasions.

    RESULTS:

    Directly after the educational intervention, the nurses described working under high time pressure. They also described being hindered in caring because of discrepancies between their caring intentions and what was possible in the surgical care context. Six months later, the nurses described a change in decision making, and a shift in the caring to make it more in line with their own intentions and patients' needs rather than the organizational structure. They also reported decreased feelings of work-related stress, decreased stress associated with work-load and feeling less disappointed at work.

    CONCLUSIONS:

    Results indicate that it may be possible to influence nurses' work-related stress through an educational intervention. According to nurses' descriptions, reflecting on their ways of caring for severely ill and dying patients, many of whom had cancer, from an existential perspective, had contributed to enhanced independent decision making in caring. This in turn appears to have decreased their feelings of work-related stress and disappointment at work.

  • 48.
    Udo, Camilla
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Melin Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Existential Reflections among Nurses in Surgical Care2010In: Journal of Palliative Care, ISSN 0825-8597, Vol. 26, no 3, p. 228-229Article in journal (Refereed)
    Abstract [en]

    Objectives: To gain a deeper understanding of surgical nurses’ experiences of existential issues in cancer care.

    Methods: Written critical incidents were used to collect nurses’ descriptions and reflections of critical care situations involving existential issues. Individual face-to-face interviews were conducted as follow-up using semi-structured questions which were analysed with hermeneutical analysis.

    Preliminary results: The analysis showed that nurses in surgical care experience caring from different positions. Nurses either focus on the patient as a whole in the caring process or nurses focus more on medical information in the caring process. When focusing on the patient as a whole existential issues are considered to be a natural part of the caring process and nurses’ personal experiences help to enable encounters with the patients. When focusing more on the medical information in the caring process there was a transfer of responsibility to others, mainly the physicians.

    Preliminary conclusions: This study highlights that existential issues are indeed part of surgical cancer care derived from existential care situations. Nurses’ focus in the caring process differs. Nurses express different positions in caring and not all acknowledge patients’ existential issues as part of nurses’ responsibility. When lacking common strategies in the organization nurses derive existential caring strategies from personal experiences.

  • 49.
    Udo, Camilla
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Melin-Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.
    Existential issues among nurses in surgical care - a hermeneutical study of critical incidents2013In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 69, no 3, p. 569-577Article in journal (Refereed)
    Abstract [en]

    Aims.  To report a qualitative study conducted to gain a deeper understanding of surgical nurses’ experiences of existential care situations.

    Background.  Existential issues are common for all humans irrespective of culture or religion and constitute man’s ultimate concerns of life. Nurses often lack the strategies to deal with patients’ existential issues even if they are aware of them.

    Design.  This is a qualitative study where critical incidents were collected and analysed hermeneutically.

    Methods.  During June 2010, ten surgical nurses presented 41 critical incidents, which were collected for the study. The nurses were first asked to describe existential care incidents in writing, including their own emotions, thoughts, and reactions. After 1–2 weeks, individual interviews were conducted with the same nurses, in which they reflected on their written incidents. A hermeneutic analysis was used.

    Findings.  The majority of incidents concerned nurses’ experiences of caring for patients’ dying of cancer. In the analysis, three themes were identified, emphasizing the impact of integration between nurses’ personal self and professional role in existential care situations: inner dialogues for meaningful caring, searching for the right path in caring, and barriers in accompanying patients beyond medical care.

    Conclusion.  Findings are interpreted and discussed in the framework of Buber’s philosophy of the relationships I-Thou and I-It, emphasizing nurses’ different relationships with patients during the process of caring. Some nurses integrate their personal self into caring whereas others do not. The most important finding and new knowledge are that some nurses felt insecure and were caught somewhere in between I-Thou and I-It.

  • 50.
    Udo, Camilla
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Melin Johansson, Christina
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Health care staff’s discussions of existential issues in cancer care2010In: Changing Health. 6th International Conference on Social Work in Health and Mental Health. 28th June - 2nd July 2010, Dublin, Ireland., 2010Conference paper (Refereed)
    Abstract [en]

    Objectives: A qualitative study was made to explore healthcare staff’s discussions about existential issues when caring for patients with cancer on a surgical ward, as described in supervision sessions.

    Methods: Secondary content analysis of twelve tape-recorded supervision sessions was used. The sessions lasted for two hours every third week during one year. The supervision sessions were conducted at a surgical clinic in a county hospital in the middle of Sweden. Twenty-one participants, 25 to 55 years of age (MD=38) who had worked on a surgical clinic for 1 to 30 years (MD=10) participated.

    Findings: The analysis showed that reflections about existential issues do exist among healthcare staff in surgical wards. There are barriers, in staff themselves as well as in the organisation hindering them to encounter patients’ existential needs which is illustrated by the domain: “Health care staff’s discussions of their existential  dilemmas” and the themes “feelings of powerlessness”, “identifying with patients”, and “getting close or keeping a distance”. Staff observed that patients have existential needs which are illustrated by the domain: “Health care staff’s discussions of patients’ existential distress” and the themes “being in despair” and “feelings of isolation”.

    Conclusions:  This study shows that healthcare staff in surgical wards is conscious of patients’ existential distress. Yet staff lack strategies to encounter patients’ existential issues. There is a need for knowledge about the meaning of existential issues and education for staff working in a surgical ward and how to encounter patients’ existential needs.

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