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  • 1. Ahlström, B H
    et al.
    Skarsäter, I
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    The meaning of major depression in family life: the viewpoint of the ill parent2010In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 19, no 1-2§, p. 284-293Article in journal (Refereed)
    Abstract [en]

    Aim and objective.

    The aim was to elucidate the meaning of major depression in family life

    from the viewpoint of an ill parent.

    Background.

    Major depression according to Diagnostic and Statistical Manual of

    Mental Disorders is common and may appear repeatedly over several

    years, and affects family life. Depression in parents has a negative

    impact on family function and children's health; however, studies

    regarding the deeper understanding of major depression in family life

    are lacking.

    Design.

    A qualitative explorative study using narrative interviews with eight

    parents who were identified with major depression.

    Methods.

    A phenomenological-hermeneutic method of interpretation was used for

    analysing interview texts and included naive understanding, a

    structural analysis where text was divided into meaning units, which

    were condensed and abstracted, and finally a comprehensive

    understanding.

    Result.

    Two themes were extracted: 'to be afflicted in an almost unmanageable

    situation' with sub-themes 'feeling hopelessly bad', 'being worthless',

    'being unsatisfied' and the theme 'to reconcile oneself to the

    situation' with sub-themes 'being active', 'being satisfied' and

    'maintaining parenthood'.

    Conclusion.

    Comprehensive understanding revealed the parents' simultaneous

    suffering and dignity in family life; suffering with serious lack of

    well-being and health, destroyed self-confidence and unhappiness, and

    dignity with strength, confidence and joy in children. The movement

    between suffering and dignity complicated family life. Dignity was

    threatened by the awareness that suffering in major depression was

    recurrent. Dignity had to be repeatedly restored for self and the

    family, and family dignity has to be restored before others outside the

    family circle.

    Relevance to clinical practice.

    A deeper understanding of the meaning of major depression in family

    life is helpful and for healthcare professionals to prevent individual

    and family suffering by assisting and preserving dignity.

     

  • 2. Ahlström, B H
    et al.
    Skärsäter, I
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Major depression in a family: what happens and how to manage - a case study2007In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 28, no 7, p. 691-706Article in journal (Refereed)
    Abstract [en]

    Major depression challenges the ways of living for both individuals and families. The aim of this study was to describe what happens and how to manage major depression in a family. The case in this paper is a family with a mother who is suffering major depression and her son and daughter. Narrative interviews and qualitative content analysis were conducted. The findings revealed six themes: "a stealthy intruder," "moving slowly to helplessness," "saving the situation," "protecting oneself and others," "conveying things that are beyond words," and the "dispersal of shadows." These themes elucidated the family members' varying views of depression and the unique ways they managed the situation.

     

     

  • 3. Berg, L
    et al.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Patients' and nurses' experiences of the caring relationship in hospital: an aware striving for trust2007In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 21, no 4, p. 500-506Article in journal (Refereed)
    Abstract [en]

    The phenomenon, caring relationship, has been widely studied in earlier research. Nevertheless, empirical studies in hospital, concerning patients and nurses experiences of the actual phenomenon caring relationship are rare. The aim was to illuminate patients with long-term illness and nurses' experiences of the caring relationship. The data were collected from 13 interviews, seven patients and six nurses, which were then analysed using an interpretive phenomenological method. This study shows patients' and nurses' view of the phenomenon. The findings concerning patients' view were identified in themes --'Maintaining dignity' with subthemes: using one's own competence and being cared for by the team as well as 'A feeling of vulnerability' with subthemes: being cared for in a strained situation and being exposed, inquiring personal caring relationship. The findings concerning nurses' view were identified in the following themes: 'A purposeful striving' with subthemes: using one's own competence and being aware of limitations as well as 'An arduous compassion' with subthemes: giving care in a strained situation and being aware of what is needed. These findings show that patients and nurses were aware in their striving for trust through forming a caring relationship. Their striving was not enough to result in trust. The findings in this study are understood as patients need a personal caring relationship which enables the possibility of trust.

     

  • 4. Berg, L
    et al.
    Skott, C
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Caring relationship in a context: fieldwork in a medical ward2007In: International Journal of Nursing Practice, ISSN 1322-7114, E-ISSN 1440-172X, Vol. 13, no 2, p. 100-106Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to investigate how the caring relationship is formed in a medical context. The data were collected using participant observation with field notes and analysed by an interpretive phenomenological method. The context circumstances in a medical milieu demanded exacting efficiency and risks to oppress the caring relationship, subsequently causing demands in nursing practice. Three themes of the caring relationship were identified as respect for each other and for themselves, responsibility to reach out to each other and engagement. Patients' and nurses' awareness in encounters drove the forming of a caring relationship that went beyond the individual nurse and patient. This study implicates the importance of an understanding of how context circumstances create the foundation of the caring relationship.

     

     

  • 5.
    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)
  • 6.
    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.

  • 7.
    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.

  • 8. Browall, M
    et al.
    Persson, L-O
    Ahlberg, K
    Karlsson, P
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Daily assessment of stressful events and coping among post-menopausal women with breast cancer treated with adjuvant chemotherapy2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 5, p. 507-516Article in journal (Refereed)
    Abstract [en]

    The purpose of the study was twofold: to examine what type of daily stressful events post-menopausal woman with breast cancer experience during adjuvant chemotherapy and how bothersome these are and to identify coping strategies used by these women used to manage such stressful events. The patient group comprised 75 consecutively invited women (≥55 years of age) at two university hospitals and one county hospital in Sweden. The Daily Coping Assessment was used to collect data over time. Data were analysed both qualitatively and quantitatively. Six categories of stressful events were identified: `nausea and vomiting', `fatigue', `other symptoms', `isolation and alienation', `fear of the unknown' and `being controlled by the treatment'. The first three categories were subsumed under the domain physical problems and the latter three under psychosocial problems. Almost 30% of the diary entries recorded no stressful event. Physical problems were three times as frequent as psychosocial problems. `Nausea/vomiting' was the most frequently observed stressful event (21.6%). `Isolation and alienation' and `fear of the unknown' were less frequent, but when they occurred they were rated as the most distressing. Several coping strategies were used to manage each stressful event. The most common strategies were acceptance, relaxation and distraction. Religion was rarely used as a coping strategy.

  • 9. Browall, Maria
    et al.
    Ahlberg, Karin
    Karlsson, Per
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Persson, Lars-Olof
    Gaston-Johansson, Fannie
    Health-related quality of life during adjuvant treatment for breast cancer among postmenopausal women2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 3, p. 180-189Article in journal (Refereed)
    Abstract [en]

    The purpose of the present study was twofold: first, to describe changes of Health-Related Quality of Life (HRQoL) during the adjuvant treatment among postmenopausal women with breast cancer; second, in the same population to identify the best predictors of Overall Quality of Life (QoL) after treatment, from perceived functioning, symptoms, emotional distress and clinical/demographic variables measured at baseline. The study group was 150 women (>= 55 years of age) scheduled for adjuvant chemotherapy (CT, n=75) or radiotherapy (RT, n=75). They were examined before (baseline), during and after completing the treatment. Data about QoL, perceived functioning, symptoms and emotional distress were collected with the European Organisation for Research and Treatment of Cancer (EORTC)-QLQ-C30, BR23 and Hospital Anxiety and Depression Scale (HADS) questionnaires. The general finding was that the adjuvant treatments were associated with decrease in overall QoL, physical and role functioning, anxiety and body image, as well as with increase in fatigue, dyspnoea, pain, nausea/vomiting, constipation and systemic therapy side effects measured over time. For women receiving CT, better emotional functioning and less pain at baseline predicted better overall QoL at the end of the treatment. For women receiving RT, better physical and emotional functioning, less breast symptoms and lower tumour stage at baseline predicted better overall QoL at the end of the treatment.

  • 10.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Kvalitativ forskningsintervju2012In: Vetenskaplig teori och metod - Från Idé till examination / [ed] Maria Henricson, Lund: Studentlitteratur, 2012, 1:1, p. 163-173Chapter in book (Refereed)
    Abstract [sv]

    Intervju som datainsamligngsmetod är lämplig att använda för forskare och studenter som vill ha beskrivningar i syfte att förstå fenomen eller situationer. Beskrivningarna ges av intervjupersonen (deltagaren) som har något att berätta om det som är i fokus. Att göra intervjuer kräver förberedelser utifrån det valda syftet, för att innehållet ska kunna anlyseras på mest trovärdiga sätt. Det krävs en noggrann planering av både intervjun ochh analysarbetet. Om analysmetod är vald redan från början är det en fördel om planeringen av intervjun görs med hänsyn till denna. kapitlet handlar om den kvalitativa forskningsintervjun med syfte att presentera planering av en intervjustudie , olika typer av intervjuer och analys av intervjudata.

  • 11.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Kvalitativ innehållsanalys2012In: Vetenskaplig teori och metod - Från idé till examination / [ed] Maria Henricson, Lund: Studentlitteratur, 2012, 1:1, p. 329-343Chapter in book (Refereed)
    Abstract [sv]

    Innehållsanalys är benämningen för empiriska vetenskapliga tekniker och metoder för kvantitativa och kvalitativa ansatser i beskrivande och tolkande analyser av texter. Kapitlet avser att beskriva kvalitativ innehållsanalys med exempel som varierar från att vara enbart beskrivande men också med en djupare tolkning. Inledningsvis kommer en redogörelse av metodologiska perspektiv genom innehållsanalysens vetenskapsteoretiska hemvist, vilket inte kan förringas i metodvalen. Innehållsanalysens vetenskapliga utveckling har sina rötter i den kvantitativa ansatsen i logisk positivism och den kvalitativa ansatsen med rötter från hermeneutiken. Detta betyder att det går att arbeta med innehållsanalys på flera sätt. Efter de metodologiska perspektiven redovisas innehållsanalysens olika delar samt en beskrivning av hur en studie med kvalitativ innehålls anlys görs med betoning på själva analysen.

  • 12.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Nursing and public health in Europe - a new continuous education programme2005In: International Nursing Review, ISSN 0020-8132, E-ISSN 1466-7657, Vol. 52, no 1, p. 32-38Article in journal (Refereed)
    Abstract [en]

    The aim of this paper is to describe the development of a new education programme in public health for nurses in the European Union (EU). The project,'Development of a Continuous Professional Education Programme for Nurses in Public Health, is described together with its background and aim, which is to contribute to the development of new competencies of nurses in nursing and public health. For the development of these competencies, the framework for the programme's guidelines is organized around core modules common for all EU countries and elective modules, based on national health needs and policies proposed by each country. An example of the implementation of the programme from Sweden, where the programme has already been offered, is also presented. In addition to the educational programme itself, the opportunities for networking for nurses and teachers from different countries resulting from this effort are discussed. Finally, the evolving nature of public health in nursing is presented in relation to the roles that nurses/midwives already perform in various countries and situations, in order to point out the potential of this programme's contribution to the promotion of health of all European citizens.

  • 13.
    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.

  • 14.
    Danielson, Ella
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg and Department of health Sciences Mid Sweden University.
    Redefining relationships and identity in young adults with type 1 diabetes.2010In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 66, no 1, p. 128-138Article in journal (Refereed)
    Abstract [en]

    Abstract

    AIM: This paper is a report of a study exploring the meaning of interactions with and supports of self-management from parents and other significant others for young adults with type 1 diabetes.

    BACKGROUND: Adolescence and young adulthood is known to be a critical period for people living with diabetes in terms of diabetes control, which is why support from significant others is of utmost importance during the transition to adult life.

    METHOD: A grounded theory approach was used. Interviews with 13 young adults with type 1 diabetes and 13 parents 2 years after transfer to adult diabetes care were conducted during 2006-2007. Internet communication between young people on a diabetes website was also included in the constant comparative analysis.

    FINDINGS: Transition to adult life for young adults with diabetes was characterized by a relational and reflexive process leading to ongoing redefinition of relationships and identity. Parents were perceived as the most reliable supporters, compared to partners, siblings and other significant others. Chat friends can also become important through emotional, social and diabetes-related support in internet communication. The young adults showed growing awareness of their own capacities, shortcomings and emotional reactions, reflections which contribute to a redefinition of self.

    CONCLUSION: Further research is needed to explore how contemporary interactions contribute to development of the self. By focusing on supporting relationships, nurses are in a strategic position to develop knowledge and modify clinical programmes that promote diabetes management and care by taking supporting interactions into account from a contemporary point of view.

  • 15.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Reflections about publications during doctoral education in health care sciences: Editorial2011In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, no 2, p. 209-210Article in journal (Other academic)
  • 16.
    Danielson, Ella
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Berntsson, Leeni
    Göteborgs universitet.
    Registered nurses' perceptions of educational preparation for professional work and development in their profession2007In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 27, no 8, p. 900-908Article in journal (Refereed)
    Abstract [en]

    There is a lack of knowledge regarding graduate nurses' experiences of preparation in nursing education for their work in health care. The aim was to describe registered nurses' (RNs) perceptions of preparation in nursing education for their professional work and development in the nursing profession. The sample consisted of 339 RNs with 3 years experience taken from Swedish class registers for graduation in nursing education. A questionnaire was sent by post to 327 RNs. The response rate was 70.3%. The results (n=219) show that the most important domains of knowledge for RNs' work were biological science, medical science and nursing, whereas humanities and social science were less important. The importance of medical science was significantly lesser in community care and nursing in emergency care. Research methodology was of little importance for RNs' work. RNs could not make use of or conduct research in their work but research planning was significantly higher for those with extensive university education. This study mainly indicates that RNs need a stimulating work environment, including mentoring and support to enable continuous professional development in health care.

  • 17.
    Edwall, L L
    et al.
    Göteborgs Universitet.
    Hellström, A L
    Göteborgs Universitet.
    Öhrn, I
    Göteborgs Universitet.
    Danielson, Ella
    Göteborgs Universitet.
    The lived experience of the diabetes nurse specialist regular check-ups, as narrated by patients with type 2 diabetes2008In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 17, no 6, p. 772-781Article in journal (Refereed)
    Abstract [en]

    AIM: The aim was to elucidate the lived experience of regular diabetes nurse specialist check-ups among patients with type 2 diabetes. BACKGROUND: Diabetes care with diabetes nurse-led clinics in primary care has been established in Sweden since the 1980s. Information about patients' lived experience of these regular check-ups is important in the further development of diabetes nursing in primary care. METHODS: Narrative interviews were conducted with 10 women and 10 men with type 2 diabetes regarding their lived experience in everyday life and the regular check-ups by the diabetes nurse specialist. A phenomenological-hermeneutic method inspired by Ricoeur was used in the analysis. RESULTS: Patients'- with type 2 diabetes - lived experience of regular check-ups showed an overall positive influence on the patients' way of living with the disease by underpinning and developing their understanding and management of daily life. This influence was interpreted as an interlinked chain comprising the following elements; being confirmed, being guided within the disease process, becoming confident and independent and being relieved. Every link contained a positive influence from being dependent-independent, autonomous and a feeling of freedom in patients striving for an everyday life with a disease under control. RELEVANCE TO CLINICAL PRACTICE: The development of diabetes-nurse-led clinics from the perspective of the patient must consider the patient's individual need for support and continuity with the diabetes nurse specialist. Consultations with collaborative partnership and specific expertise that is easy to access implied autonomous disease self-management in terms of patients' own control of the disease over time. In view of the increasing number of patients with diabetes, this could positively impact the availability of diabetes nursing care.

     

     

  • 18. Edwall, Lise-Lotte
    et al.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Öhrn, Ingbritt
    The meaning of a consultation with the diabetes nurse specialist2010In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 24, no 2, p. 341-348Article in journal (Refereed)
    Abstract [en]

    The meaning of a consultation with the diabetes nurse specialist Objective: The aim of this study was to elucidate the essential meaning of a consultation between diabetes nurse specialists and patients to gain a deeper understanding of the patients' experiences. Methods: Twenty patients with type 2 diabetes were interviewed about their experience of a consultation at an annual check-up with the diabetes nurse specialist. A phenomenological hermeneutic method was used in the analysis and interpretation of the text. Results: The patient's experience of a consultation was interpreted as manifestation of hold on the disease control. This means a safeguard to continue daily life shown in the four themes being controlled, feeling exposed, feeling comfortable, and feeling prepared. Conclusion: The patients' experiences of a consultation with the diabetes nurse specialist became the basis for a health maintenance process in dealing with critical health-disease aspects. Implications to practice: In a consultation, professionals have to take into account the potential emotional turbulence that disease progression can mean to a patient. Diabetes care implies patient dependence on support to avoid a potential self-management insufficiency and call attention to professionals' time for listening to patients' perceptions.

  • 19.
    Hallin, Karin
    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.
    Being a personal preceptor for nursing students: Registered Nurses' experiences before and after introduction of a preceptor model2009In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 65, no 1, p. 161-174Article in journal (Refereed)
    Abstract [en]

    Aim. This paper is a report of a study to compare Registered Nurses’ experiences of acting as personal preceptors for nursing students in the year 2000 with the year 2006 and explores relationships between preceptors’ experiences and personal/clinical characteristics.

    Background: Preceptoring is experienced as stressful and challenging. How successful preceptors are in this role depends largely on the support they receive. Knowledge about preceptors’ experiences over time and in relation to a preceptor model is limited.

    Method: Data were collected by questionnaire in 2000 (n=113) and 2006 (n=109) with preceptor groups in a hospital in Sweden before and after introduction of a preceptor model. Data were analysed with descriptive and correlational statistics using parametric and nonparametric methods.

    Findings: Statistically significant improvements were noted in preceptors’ experiences between 2000 and 2006. Statistically significantly more preceptors in 2006 reported that they felt prepared for their role and felt support from teachers, colleagues, chief nurses and enrolled nurses. Least improvement was seen in relation to the questionnaire items workload, constructive feedback and support in linking research results to practice. A strong positive relationship existed between preceptors’ experiences of the preceptor role and the level of interest in preceptoring.

    Conclusion: The preceptor model offers a way to support and facilitate preceptors and to develop co-operation between university and hospital. Future research should focus on students’ experiences, experiences of first-time preceptors, head preceptors and teachers from a longitudinal perspective.

  • 20.
    Hallin, Karin
    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.
    Being a personal preceptor for nursing students: Registered Nurses' experiences before and after introduction of a preceptor model. Vikten av samverkan mellan lärosäte och vårdverksamheter2008Conference paper (Other academic)
  • 21.
    Hallin, Karin
    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.
    Being a personal preceptor for nursing students: Registered Nurses' experiences before and after introduction of a preceptor model. Vikten av samverkan mellan lärosäte och vårdverksamheter2009Conference paper (Other academic)
  • 22.
    Hallin, Karin
    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.
    Preceptoring nursing students: Registred Nurses´ perceptions of nursing students´ preparation and study approaches in clinical education2010In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 30, no 4, p. 296-302Article in journal (Refereed)
    Abstract [en]

    Preceptorship influences Registered Nurses’ (RNs) daily work to different degrees depending on nursing students’ knowledge, and willingness to learn. Consequently, it is of the utmost importance to investigate how RNs assess nursing students in clinical education. The aim of this study was to describe RNs’ perceptions of nursing students’ preparation and study approaches at hospital workplaces, and to explore relationships between RNs’ perceptions and their personal/clinical characteristics. A cross-sectional design was used. In 2006, 142 of 196 RNs at a Swedish hospital answered a questionnaire (response rate 72.5%). The majority of RNs (63–84%) rated students’ study approaches highly and thought students comprehended the outcomes of learning. Fewer (45–49%), rated students as having adequate theoretical knowledge highly and were of the opinion that they had acquired knowledge about the unit. Statistically, non specialist nurses rated significantly higher compared with specialist nurses. Significant positive correlations were found between the RNs’ perceptions of nursing students and their interest in preceptoring. The extent to which preparation programmes, established in collaboration between a university and a hospital, had improved preceptors and nursing students was not graded. Further descriptive and intervention studies are therefore needed.

     

  • 23.
    Hallin, Karin
    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.
    Registered nurses' experiences of daily work, a balance between strain and stimulation: A qualitative study2007In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 44, no 7, p. 1221-1230Article in journal (Refereed)
    Abstract [en]

    The challenges in the health care have given rise to a highly stressful work situation and a more complicated role for registered nurses (RNs). Qualitative studies about daily work as a whole is limited. It is therefore vital for future development of nursing knowledge and nursing education to recurrently investigate RNs' experiences of their ability to grasp and manage their daily work situation and to promote a high quality of care. Aim: The aim of this study was to explore RNs' experiences of their daily work. Methods and participants: This follow up study was carried out involving 15 Swedish RNs six years after their graduation. Interviews, conducted with conversational strategy, were chosen for the data collection and content analysis was used to handle the interview texts. Results: The analysis resulted in a main theme 'to balance strain and stimulation', two themes and seven sub-themes. The first theme 'a stressful work situation' consisted of the sub-themes: 'to meet all demands', 'to be insufficient', 'to be unsure of oneself', 'too little contact with patient'. The second theme 'a stimulating work situation' consisted of the sub-themes: 'to encounter patients and health care staff is enriching', 'to have the situation under control', 'to have the skills necessary to be independent'. A pattern emerged throughout the themes, which showed that due to the increasing number of patients RNs' capacity for management, prioritising and planning out of team work, and performing exacting documentation diminished. Conclusion: The RNs' daily work has been illustrated as a scale of balance that oscillated between strain and stimulation; an oscillation towards strain could lead to a vicious circle. The RNs need support from the start through nursing education and continuously in profession. This is a crucial issue for nursing education and health care sector.

  • 24.
    Hallin, Karin
    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.
    Registered Nurses' perceptions of their work and professional development2008In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 61, no 1, p. 62-70Article in journal (Refereed)
    Abstract [en]

    AIM: This paper is a report of a study to elucidate Registered Nurses' perceptions of their work and professional development 6 years after graduation. BACKGROUND: Nursing education and health care has rapidly changed in the last two decades. Education and experience are important components in Registered Nurses' ability to promote a high quality of care, but a great deal depends on their work circumstances. This study emphasizes Registered Nurses' view of their work in health care, at a time in their career when they have several years of experience. METHOD: Data were collected in 2003 from in-depth interviews with 15 Registered Nurses 6 years after their graduation. The interviews were semi-structured and analysed with interpretive content analysis. FINDINGS: The findings revealed two themes and five sub-themes. The first theme, An appropriate but demanding profession, consisted of two sub-themes: 'having found one's niche' and 'growing old in nursing may be difficult'. The second theme, A profession with opportunities and obstacles, consisted of three sub-themes: 'being aware of Registered Nurses' potential', 'having knowledge that is seldom made use of' and 'attaining professional growth is no matter of course'. CONCLUSION: Keeping Registered Nurses' satisfied and avoiding their dissatisfaction is crucial for both educators and employers. It is essential that employers give priority to Registered Nurses' time with patients and to motivate and support them in professional development. Further intervention studies regarding a change of the balance between obstacles and opportunities are needed.

  • 25.
    Hallin, Karin
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Swärd, Gunilla
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Sjuksköterskors erfarenheter av att vara handledare för sjuksköterskestuderande: Rapport2001Conference paper (Other academic)
  • 26.
    Hallin, Karin
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Swärd, Gunilla
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Sjuksköterskors erfarenheter av att vara handledare för sjuksköterskestuderande: Rapport2002Report (Other scientific)
    Abstract [sv]

    Syftet med studien var att beskriva och analysera handledarnas erfarenheter av den rådande ordningen för sjuksköterskestudenter i klinisk utbildning vid en högskola i Mellansverige. Ett frågeformulär skickades till 227 sjuksköterskor och besvarades av 160 (70%). Resultatet visade att sjuksköterskorna var positiva till studenter men kände osäkerhet i handledarfunktionen. De med handledar-/pedagogisk utbildning var säkrare jämfört med de som saknade sådan utbildning. Den tid som ägnades åt handledning varierade från handledare till handledare, men genomgående nämndes brist på handledningstid på grund av hög arbetsbelastning. Resultatet tydliggör ett behov av utbildningsinsatser och utökat handledarstöd för att studenterna i den kliniska utbildningen skall uppnå både yrkeskrav och högskolemässig utbildning. Resultatet kommer att vara vägledande i upprättande av handlingsplaner och förutsättning för en uppföljningsstudie efter handledningsmodellens införande.

  • 27.
    Hedman Ahlström, B.
    et al.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Skärsäter, I.
    Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Children's view of a major depression affecting a parent in the family2011In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 32, no 9, p. 560-567Article in journal (Refereed)
    Abstract [en]

    This study aims to elucidate, from the children's perspective, the meaning for family life of a parent suffering a major depression disorder. Eight children and young adults were interviewed. Phenomenological-hermeneutic analysis generated two themes: (1) "Being a rescuing observer" with the subthemes, "Being attentive" and "Being considerate," and (2) "Being a frustrated observer" with the subthemes, "feeling discomfort" and "being out of it." Children's lives alternate between responsibility and loneliness as they wait for reciprocity in family life to return to normal. Children need support in order to manage their sense of responsibility and loneliness adequately.

  • 28. Hedman Ahlström, Britt
    et al.
    Skarsäter, Ingela
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Living with major depression: experiences from families' perspectives2009In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 23, no 2, p. 309-316Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe the ways of living with major depression in families. Seven families with an adult member who suffered major depression participated, in all 18 participants. Data were collected from seven narrative group interviews, one with each family. A qualitative thematic content analysis was used and the text was coded according to its content and further interpreted into themes. Findings consist of five themes: 'Being forced to relinquish control of everyday life'; during depression the family members lost their energy and could not manage everyday life. 'Uncertainty and instability are affecting life'; everyday life in the families was unstable and emotions influenced the atmosphere. 'Living on the edge of the community': the families periodically lived in seclusion. 'Everyday life becomes hard'; everyday life was demanding for everyone in the family and the responsibility shifted between family members. 'Despite everything a way out can be found'; the families as a unit as well as individually had their own ways of coping and finding some kind of satisfaction within the bounds of possibility. The families' experiences were demanding. Children were aware of their parent's depression and were involved in managing everyday life and emotionally affected by the situation. This legitimates the need for nurses and other healthcare professionals to have a family's perspective on the whole situation and to include partners as well as children and take their experiences seriously when supporting and guiding a family. It is important to develop strategies which in particular include children in the planning, provision and receiving of care as well as unburden them with the responsibility. It is also important to support the family in their own coping strategies with a major depressive episode.

  • 29. Henoch, I
    et al.
    Bergman, B
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Dyspnea experience and management strategies in patients with lung cancer2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 7, p. 709-715Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this paper was to describe lung cancer patients' experience of dyspnea and their strategies for managing the dyspnea. METHODS: Semi-structured interviews with two main questions about dyspnea experiences and management were conducted with 20 patients with lung cancer, not amenable to curative treatment, who had completed life prolonging treatments. Data analysis was made with a descriptive, qualitative content analysis. RESULTS: The two questions resulted in two domains with 7 categories and subcategories. The experience of dyspnea included four categories: 'Triggering factors' included circumstances contributing to dyspnea, which comprised physical, psychosocial and environmental triggers. Bodily manifestations were considered to be the core of the experience. 'Immediate reactions' concerned physical and psychological impact. The long-term reactions included limitations, increased dependence and existential impact concerning hope, hopelessness and thoughts of death. The experience of managing dyspnea included three categories: 'Bodily strategies', 'psychological strategies' and 'medical strategies'. CONCLUSION: Dyspnea experience is a complex experience which influences the life of the patients both with immediate reactions and long-term reactions concerning physical, emotional and existential issues in life and patients address this experience with managing strategies in order to take control of their situation, although they do not seem to be able to meet the existential distress they experience.

  • 30. Henoch, I
    et al.
    Bergman, B
    Gustafsson, M
    Gaston-Johansson, F
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Dyspnea experience in patients with lung cancer in palliative care2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 2, p. 86-96Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe the dyspnea experience and examine its relation to other symptoms, personal and health-related factors and its predictors in patients with lung cancer. The subjects were 105 patients diagnosed with lung cancer, approached when active anti-tumour treatment was closed. The patients completed a battery of questionnaires about several aspects of dyspnea experience, intensity of other symptoms and coping capacity. Medical data including performance status were obtained from medical records. Above 50% of the patients perceived dyspnea. Coping capacity, performance status and other symptoms correlated with different aspects of dyspnea experience. Dyspnea dimensions and activity-related dyspnea correlated with anxiety, depression, fatigue and cough as well as negatively to coping capacity. Performance status correlated with dyspnea intensity and activity-related dyspnea. Lower coping capacity predicted dyspnea; additional predictors were higher levels of anxiety and fatigue. Dyspnea in this group of patients was a complex experience, including physical and psychological aspects and should preferably be assessed in a comprehensive way. A nursing intervention to decrease dyspnea experience and anxiety could use knowledge from this study about the importance of coping capacity to better help patients with lung cancer to cope in their palliative phase of the disease

  • 31. Henoch, I
    et al.
    Bergman, B
    Gustafsson, M
    Gaston-Johansson, F
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    The impact of symptoms, coping capacity, and social support on quality of life experience over time in patients with lung cancer2007In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 34, no 4, p. 370-379Article in journal (Refereed)
    Abstract [en]

    The aims of the study were to investigate lung cancer patients' quality of life (QoL) over time in a palliative setting and to determine how QoL is influenced by symptoms, coping capacity, and social support. One hundred and five consecutive patients with incurable lung cancer were included. A comprehensive set of questionnaires was used at baseline, including the Assessment of Quality of Life at the End of Life, Cancer Dyspnea Scale, Visual Analog Scale of Dyspnea, Hospital Anxiety and Depression scale, Sense of Coherence Questionnaire, and Social Support Survey, of which the first four were used also at three, six, nine, and 12 months. Dyspnea, depression, and global QoL deteriorated over time. Performance status, anxiety, depression, components of dyspnea, pain, and the meaningfulness component of coping capacity correlated with global QoL at all, or all but one follow-up measurements. In a multivariate analysis with global QoL as the dependent variable, depression was a significant predictor at four out of five assessments, whereas coping capacity, anxiety, performance status, pain, and social support entered the model at one or two assessments. Emotional distress and coping capacity influence QoL and might be targets for intervention in palliative care.

     

     

  • 32. Henoch, I
    et al.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Existential concerns among patients with cancer and interventions to meet them: an integrative literature review2008In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 18, no 3, p. 225-236Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: An integrative literature review was undertaken to explore existential concerns among patients with cancer with respect to components, related concepts and targets of interventions. METHODS: Comprehensive searches in MEDLINE, CINAHL, PsychINFO, Social Citation Index, SweMed+, Eurethics, NLM Gateway, Faculty of 1000 Medicine, Cochrane Library, EMBACE were undertaken. Each paper was read and classified according to design as descriptive qualitative, descriptive quantitative or interventional. Main themes, interventions and outcomes were identified. RESULTS: The searches yielded a total of 162 articles, of which 109 met inclusion criteria. Existential components from the qualitative studies were divided into two main themes: struggle to maintain self-identity and threats to self-identity. Quantitative studies mainly concerned relationships between existential concerns and other concepts. Interventions and assessed outcomes were consistent with components and relationships found in the descriptive studies. Relationships concerned physical and psychological domains; however, few interventions were evaluated against physical outcomes. No interventions applicable to everyday health-care practice were found. CONCLUSION: Interventions targeted and evaluated concepts related to existential concerns found in the descriptive studies. Gaps in research on existential concerns in patients with cancer include the need to clarify the concept; how patients' existential well-being may best be supported by health-care professionals in everyday practice; effects of existential interventions on physical symptoms; and stability of results of interventions.

     

  • 33.
    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.

  • 34.
    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.

  • 35.
    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.

  • 36.
    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.

  • 37.
    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.

  • 38.
    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.

  • 39. Jansson, U B
    et al.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Hellström, A L
    Parents' experiences of their children achieving bladder control2008In: Journal of Pediatric Nursing: Nursing Care of Children and Families, ISSN 0882-5963, E-ISSN 1532-8449, Vol. 23, no 6, p. 471-478Article in journal (Refereed)
    Abstract [en]

    Achieving bladder control is important for children and parents, but there is a shortage of knowledge about experiences from parents' points of view. The aim of this study was to describe parents' experiences of how their children achieved dryness. Twenty-two parents of 21 healthy children were interviewed about the process. The transcribed interviews were analyzed using the qualitative content analysis. How children achieve dryness, as reported mainly by their mothers, seems to be influenced by knowing the time had come, implementing new daily routines, the child's willingness, and a desire to be like others.

     

     

  • 40. Johansson, I M
    et al.
    Skärsäter, I
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Encounters in a locked psychiatric ward environment2007In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 14, no 4, p. 366-372Article in journal (Refereed)
    Abstract [en]

    This focused ethnographic study aims at describing encounters in the healthcare environment on a locked psychiatric ward. It was carried out in Sweden on an acute psychiatric ward for patients with affective and eating disorders. Data were collected through participant observations and informal interviews, and analysed by qualitative content analysis. The result shows that the healthcare environment on this locked psychiatric ward offered a space for encounters between people, in a continuum from professional care to private meetings and social events. It included joy and friendship as well as unintentional insights into other patients' suffering. The characteristics of the encounters formed three themes: the caring relationship, the uncaring relationship and the unrecognized relationship. The caring and the uncaring relationship concerned relationships between staff and patients or their next of kin. These revealed contrasting qualities such as respect and flexibility as well as lack of respect and mistrust. The unrecognized relationship theme visualized the patients' relationships with each other and included both supportive and intrusive elements that were probably significant for the outcome of care. The unrecognized relationship contributes with new knowledge about conditions for patients in inpatient care, and indicates that the patients' relationships with each other merit greater attention.

     

     

  • 41.
    Johansson, I. M.
    et al.
    Jönköping University, School of Health Sciences, Jönköping, Sweden.
    Skärsäter, I.
    The Sahlgrenska Academy at the University of Gothenburg, Institute of Health and Care Sciences, Gothenburg, Sweden.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    The experience of working on a locked acute psychiatric ward2013In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 20, no 4, p. 321-329Article in journal (Refereed)
    Abstract [en]

    This study's aim was to elucidate health-care staff experience of working on a locked acute psychiatric ward. In many countries changes in health care has contributed to fewer beds available in inpatient care, and a concentration of patients with severe psychiatric conditions. This implies a changing work environment in acute psychiatric care. Qualitative interviews with health-care staff (n= 10) were carried out on a ward for patients with affective disorder and eating disorder in a Swedish hospital. Qualitative content analysis was used. Four themes were identified from the data: 'undergoing changes in care delivery', 'feeling a need for security and control', 'managing the demands at work' and 'feeling a sense of responsibility'. This study adds to earlier research into how a sense of responsibility can place a significant burden on health-care staff working on a locked psychiatric ward and also contribute to increased control of patients. This study also shows that relationships and power structures among health-care staff need to be addressed when organizational changes are made in care delivery. Further research is needed to reach a comprehensive understanding of care on locked acute psychiatric wards, including a development of nursing and medicine as knowledge domains in one common context. © 2012 Blackwell Publishing.

  • 42. Johansson, I M
    et al.
    Skärsäter, I
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    The health-care environment on a locked psychiatric ward: an ethnographic study2006In: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 15, no 4, p. 242-250Article in journal (Refereed)
    Abstract [en]

    Recent changes in psychiatric hospital care involving a reduction in the number of beds and time spent in hospital motivated the study of conditions of inpatient care on such wards. An ethnographic study of a locked, acute psychiatric ward in a department of psychiatry was performed with the aim of describing the health-care environment in such a ward. The ward admitted patients on both a voluntarily and involuntarily basis. Data were collected by means of 3.5 months of participant observations. The results showed a health-care environment that was overshadowed by control. Staff were in control but they also lacked control; they attempted to master the situation in line with organizational demands and they sometimes failed. At the same time, the staff tried to share the responsibility of caring for patients and next of kin. Patients were controlled by staff; they were the underdogs and dependent on staff for their care and the freedom to leave the ward. Patients tried to make themselves heard and reacted to the control by developing counter-strategies. What this study adds to earlier research is patients' pressure on staff and sometimes quite an open struggle for more control, which may be an expression for an unacceptable imbalance in power between patients and staff.

     

     

  • 43. Johansson, Inger M
    et al.
    Skarsäter, Ingela
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    The meaning of care on a locked acute psychiatric ward: Patients' experiences2009In: Nordic Journal of Psychiatry, ISSN 0803-9488, E-ISSN 1502-4725, Vol. 63, no 6, p. 501-507Article in journal (Refereed)
    Abstract [en]

    Background: The deinstitutionalization of psychiatric care has led to a

    concentration of patients to fewer wards. This leads to difficulties in

    separating voluntarily and involuntarily admitted patients, and there

    is a risk that the interest in safeguarding patients' autonomy will

    decrease. Aims: The aim of this study was to elucidate the meaning care

    has to patients on a locked acute psychiatric ward. The study was

    performed on a ward for patients with affective and eating disorders

    who were admitted both voluntarily and involuntarily. Methods:

    Interviews were conducted and analysed using qualitative content

    analysis. Results: The results show that to the patients, care had

    contradictory qualities some alleviated their suffering while others

    contributed to stress. The alleviation from suffering originated from

    the experiences of strengthened integrity and self-determination, from

    being supported, and having a place of refuge on the ward. In contrast

    to this, there were experiences of being dependent and trapped because

    of lack of influence and choice, and being controlled. Conclusions: In

    conclusion, this qualitative study shows that to the patients, care can

    mean being disciplined in a way that risks undermining the alleviation

    of suffering that care can provide. It is thus important to be

    observant when it comes to manifestations of control in care. The study

    also shows that the support of fellow patients has a value as a

    complement to the care given by staff members and next of kin,

    something that needs to be further investigated.

     

  • 44. Jönsson Dahlqvist, Patrik
    et al.
    Wijk, Helle
    Skärsater, Ingela
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Persons living with bipolar disorder: Their view of the illness and the future2008In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 29, no 11, p. 1217-1236Article in journal (Refereed)
    Abstract [en]

    The aim of this study is to describe the meaning of living with bipolar disorder (BD) based on individuals' views of the illness and their future. Interviews were conducted with 18 participants who resided in Sweden and had been diagnosed with bipolar disorder. Qualitative content analysis was employed. The findings revealed that daily life of those with BD was characterized by insecurity and challenges of accepting, understanding, and managing the illness. Increased hope of being able to influence the condition and receiving support to achieve a stable structure in life facilitates the management of daily life. Further research is needed on the next of kins' experiences of living with persons with BD.

  • 45.
    Jönsson, P. D.
    et al.
    Univ Gothenburg, Sahlgrenska Acad, Inst Hlth & Care Sci, Vardalinst, Halmstad, Sweden.
    Wijk, H.
    Sahlgrens Univ Hosp, Dept Patient Safety & Qual Improvement, Gothenburg, Sweden.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Skarsater, I.
    Univ Gothenburg, Inst Hlth & Care Sci, Sahlgrenska Acad, Vardalinst, Gothenburg, Sweden.
    Outcomes of an educational intervention for the family of a person with bipolar disorder: a 2-year follow-up study2011In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 18, no 4, p. 333-341Article in journal (Refereed)
    Abstract [en]

    This study aimed to analyse the outcomes of an educational intervention for family members living with a person with bipolar disorder. A longitudinal study was conducted comprising a 10-session educational intervention designed for families with members in outpatient mental health care. Thirty-four family members agreed to participate. Data were collected on five occasions, at baseline and during a 2-year follow-up through self-assessment instruments: the Carers of Older People in Europe Index, the Jalowiec Coping Scale-40, the Sense of Coherence questionnaire and the Social Adaptation Self-evaluation Scale. The results showed that the condition had a considerable negative impact on the family members as carers, but the educational intervention increased their understanding, which facilitated the management of their lives. A significant improvement in stress management was seen over time and social functioning was retained. The study showed that families living with one member with bipolar disorder benefited from the educational intervention in terms of increasing understanding of the condition and reducing stress. Mental health care needs to develop educational interventions further and offer the families support to strengthen their ability to manage with the situation.

  • 46.
    Jönsson, Patrik D
    et al.
    Cty Hosp, Dept Psychiat, Psychiat Serv, SE-30185 Halmstad, Sweden .
    Skärsäter, Ingela
    Univ Gothenburg, Inst Heath & Care Sci, Sahlgrenska Acad, Gothenburg, Sweden .
    Wijk, Helle
    Univ Gothenburg, Inst Heath & Care Sci, Sahlgrenska Acad, Gothenburg, Sweden .
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Experience of living with a family member with bipolar disorder2011In: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 20, no 1, p. 29-37Article in journal (Refereed)
    Abstract [en]

    Bipolar disorder (BD) is a severe illness that has a serious impact on the lives of those affected and on their families. The aim of this study was to elucidate what it means for family members to live with an adult person who has BD, with reference to their views concerning the condition of the person affected and the future. During 2005, 17 family members of people with the disorder were interviewed, and the data obtained were subjected to a qualitative content analysis. The findings showed that family members felt alone with their experiences and struggled to make sense of and to maintain normality, as their life was encroached on by the condition. Bearing the burden of responsibility and control made it difficult for family members to focus on their own future. To build hope, they needed opportunities to share their experiences with others, increased understanding of the condition, and relief from the burden they bore. This study underlines the importance of strengthening support holistically for family members living with an adult person with BD. Support and interventions concerning these families' needs have to be developed and should be provided by all mental health-care services.

  • 47. Lindström, I
    et al.
    Gaston-Johansson, F
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Documentation of patients' participation in care at the end of life2006In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 13, no 4, p. 394-403Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe how patients' participation in the care they received was documented in their health care records during the last three months of their lives. Two hundred and twenty-nine deceased adult persons were randomly identified from 12 municipalities in a Swedish county and their records were selected from different health care units. Content analysis was used to analyse the text. Four categories of patient participation were described: refusing offered care and treatments; appealing for relief; desire for everyday life; and making personal decisions. The most common way for these patients to be involved in their care at the end of their life was by refusal of the treatment and care offered. Characteristic of the different ways of participation were the diverse activities represented. The description of patients' involvement in their life situation at this time indicated their dissociation from the health care offered more than consenting to it.

     

     

  • 48. Lundin, C S
    et al.
    Danielson, Ella
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
    Öhrn, I
    Handling the transition of adolescents with diabetes: participant observations and interviews with care providers in paediatric and adult diabetes outpatient clinics.2007In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 7, no 1, p. e05-Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The purpose of this study was to explore how care providers handle the transition process from paediatric to adult diabetes outpatient clinic and to describe their perception of adolescents' needs during this process. METHODS: Participant observations of patient visits to nurses and physicians and 10 semi-structured interviews with care providers in two paediatric and two adult clinics in Sweden were carried out. Data were analysed using the constant comparative method developed in the grounded theory tradition. RESULTS: The integrated framework developed in the analysis consists of subcategories, process categories and a core phenomenon. The preparation phase showed in this study that preparing transition requires modified strategies. The transition phase implied transferring responsibility and changing care relations while the evaluation phase revealed that care providers are creating mutual understanding through appraisal. All categories are related to the generated core phenomenon: enabling integration through professional meetings. The way care providers construct meeting arenas has a crucial impact on the possibility to bridge uncertainty, insufficient knowledge, routines and strategies. CONCLUSIONS: The way participating clinics handle transition greatly influences the process. Professional meetings appeared to be of vital importance to enable the building of bridges between paediatric and adult diabetes care in this study.

     

     

  • 49.
    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.

  • 50.
    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.

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