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  • 1.
    Axelsson, Lena
    et al.
    Sophiahemmet högskola; Karolinska institutet.
    Klang, Birgitta
    Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet högskola; Karolinska institutet; Stiftelsen Stockholms sjukhem.
    Jacobson, Stefan H
    Karolinska institutet; Danderyds sjukhus.
    Gleissman, Sissel Andreassen
    Sophiahemmet högskola; Karolinska institutet; Danderyds sjukhus.
    End of life of patients treated with haemodialysis as narrated by their close relatives.2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, p. 776-84Article in journal (Refereed)
    Abstract [en]

    AIM: The study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives.

    INTRODUCTION: Many patients undergoing haemodialysis are older, have several comorbidities and underestimated symptoms and are in their last year of life. To improve care, we need to know more about their end-of-life situation.

    DESIGN: Qualitative and descriptive.

    METHODS: Qualitative retrospective interviews were conducted with 14 close relatives of deceased haemodialysis patients (3-13 months after death). Data were analysed using qualitative content analysis. The study is ethically approved.

    FINDINGS: In the last months, a gradual deterioration in health with acute episodes necessitating hospital admissions was described. This involved diminishing living space and expressions of dejection, but also of joy. Three patterns emerged in the last weeks: uncertain anticipation of death as life fades away; awaiting death after haemodialysis withdrawal; and sudden but not unexpected death following intensive care. Findings show complexities of decisions on haemodialysis withdrawal.

    CONCLUSIONS: Different end-of-life patterns all involved increasingly complex care needs and existential issues. Findings show a need for earlier care planning. The identification of organisational factors to facilitate continuity and whole person care to meet these patients' specific care needs with their complex symptom burdens and comorbidities is needed. Findings indicate the need for integration of a palliative care approach in the treatment of patients in haemodialysis care.

  • 2.
    Axelsson, Lena
    et al.
    Sophiahemmet högskola; Karolinska Institutet.
    Klang, Birgitta
    Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet högskola; Karolinska institutet.
    Jacobson, Stefan H
    Danderyds sjukhus; Karolinska institutet.
    Gleissman, Sissel Andreassen
    Sophiahemmet högskola; Danderyds sjukhus; Karolinska institutet.
    Meanings of being a close relative of a family member treated with haemodialysis approaching end of life2015In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, no 3-4, p. 447-56Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To describe and elucidate the meanings of being a close relative of a severely ill family member treated with maintenance haemodialysis approaching the end of life.

    BACKGROUND: End-stage renal disease together with comorbidities, haemodialysis treatment and high mortality rates also affects the lives of close relatives, who report burdens and impaired quality of life. To improve care, more understanding is needed of close relatives' experiences during these patients' end of life.

    DESIGN: This study has a qualitative interpretative design.

    METHODS: Fourteen retrospective qualitative interviews were conducted with close relatives (aged 48-93 years) of deceased patients who had been treated with haemodialysis. The interview text was interpreted using a phenomenological hermeneutical method in three phases.

    RESULTS: The findings of the structural analysis were formulated as six themes: Striving to be supportive and helpful without doing harm to the ill person's self; Needing increasing strength and support; Balancing the will to help with one's own ongoing life; Increasing responsibility involving dilemmas; Striving for a good life together in the present and Living with awareness of death.

    CONCLUSIONS: Close relatives strive for balance and well-being accompanying their ill family member through the end of life. They are facing moral dilemmas and growing demands as their responsibility increases with the deterioration of their family member. Support from and interaction with the healthcare professionals is then of significance.

    RELEVANCE TO CLINICAL PRACTICE: Findings challenge healthcare professionals in haemodialysis settings to identify close relatives' individual resources and needs towards the patients' end of life. Healthcare professionals in haemodialysis settings need to offer close relatives opportunities to talk about the future and what may be expected at end of life, with or without haemodialysis. They should also contact the closest relative after the death as they may need confirmation and closure.

  • 3.
    Axelsson, Lena
    et al.
    Sophiahemmet högskola, Karolinska institutet.
    Randers, Ingrid
    Sophiahemmet högskola, Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet högskola, Karolinska institutet.
    Jacobson, Stefan H
    Karolinska institutet, Danderyds sjukhus.
    Klang, Birgitta
    Karolinska institutet.
    Thoughts on death and dying when living with haemodialysis approaching end of life.2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 15-16, p. 2149-59Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To describe inner thoughts and feelings relating to death and dying when living with haemodialysis approaching end of life.

    BACKGROUND: Patients who undergo maintenance haemodialysis suffer a significant symptom burden and an impaired quality of life. The high mortality rate in these patients indicates that about one-fourth of them are in their last year of life, suggesting the presence of death and dying in the haemodialysis unit.

    DESIGN: A qualitative descriptive design was used. Methods.  A total of 31 qualitative interviews were conducted with eight patients (aged 66-87) over a period of 12 months. Qualitative content analysis was used to analyse data.

    RESULTS: The analysis revealed 10 subthemes that were sorted into three main themes. Being aware that death may be near comprises being reminded of death and dying by the deteriorating body, by the worsening conditions and deaths of fellow patients, and by knowing haemodialysis treatment as a border to death. Adapting to approaching death comprises looking upon death as natural, preparing to face death, hoping for a quick death and repressing thoughts of death and dying. Being alone with existential thoughts comprises a wish to avoid burdening family, lack of communication with healthcare professionals and reflections on haemodialysis withdrawal as an hypothetic option.

    CONCLUSIONS: Living with haemodialysis approaching, the end of life involves significant and complex existential issues and suffering, and patients are often alone with their existential thoughts.

    RELEVANCE TO CLINICAL PRACTICE: Nurses and other healthcare professionals in haemodialysis settings need to combine technical and medical abilities with committed listening and communication skills and be open to talking about death and dying, with sensitivity to individual and changeable needs.

  • 4.
    Beck, Ingela
    et al.
    Lunds universitet.
    Olsson Möller, Ulrika
    Lunds universitet.
    Malmström, Marlene
    Lunds universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Samuelsson, Henrik
    Palliativ vård och ASIH Ystad .
    Lundh Hagelin, Carina
    Sophiahemmet högskola; Karolinska institutet.
    Rasmussen, Birgit
    Lunds universitet.
    Fürst, Carl Johan
    Lunds universitet.
    Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff2017In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 16, p. 1-10, article id 49Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.

    METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.

    RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.

    CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

  • 5.
    Browall, Maria
    et al.
    Jönköping University; Göteborgs universitet.
    Pakpour, Amir H.
    Jönköping University; Qazvin University of Medical Sciences, Iran.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet; Angereds närsjukhus.
    Development and Psychometric Evaluation of a New Short Version of the Swedish Frommelt Attitudes Toward Care of the Dying Scale2021In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 44, no 4, p. 305-313Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Frommelt Attitudes Toward Care of the Dying (FATCOD) is widely used as a measure of attitudes toward care of dying patients. However, poor factor structure and item redundancy have been reported across the literature.

    OBJECTIVE: A short version of the questionnaire is needed, to facilitate effective assessments of the attitudes of those caring for dying patients. The purpose of this study was to develop a FATCOD-Short Form and to secure its psychometric properties.

    INTERVENTIONS/METHODS: Data gathered from 1000 nurses in previous studies were pooled and reanalyzed. Principal components analysis and confirmatory factor analysis were utilized to assess the factor structure of the FATCOD-30. A Rasch model was used to evaluate the measurement functioning of the scale.

    RESULTS: Of the original 30 items, 9 items of FATCOD were chosen for retention in the short form based on the principal components analysis, floor or ceiling effects, interitem correlations, and item-total correlation. All 9 items had good internal reliability. Both confirmatory factor analysis and Rasch analysis supported the unidimensionality of the FATCOD-Short Form.

    CONCLUSIONS: The 9-item FATCOD-Short Form demonstrates evidence of acceptable validity and reliability to identify nurses' attitudes toward caring for dying persons because of its brevity and comprehensive content.

    IMPLICATIONS FOR PRACTICE: When changing curricula in nursing education or implementing new procedures in nursing practice, it is important to have valid instruments to evaluate the results of the change. Such instruments should not be too lengthy or complicated. FATCOD-Short Form is a brief and valid instrument that can be easily used.

  • 6.
    Craftman, Åsa G.
    et al.
    Karolinska institutet; Sophiahemmet högskola.
    Pakpour, Amir H.
    Jönköping University.
    Calderon, Helena
    Närsjukvården i Finspång.
    Meling, Anna
    Hälso- och sjukvårdsorganisationen, Finspång.
    Browall, Maria
    Jönköping University; Göteborgs universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Home care assistants' attitudes and perceptions of caring for people at the end of life in their homes in Sweden2022In: Health & Social Care in the Community, ISSN 0966-0410, E-ISSN 1365-2524, Vol. 30, no 5, p. e2648-e2656Article in journal (Refereed)
    Abstract [en]

    The ageing population is increasing worldwide, with older people often having multimorbidity and a need for help with activities and personal care. Home Care Assistants (HCAs) are central to the provision of care in the home. They meet older people approaching the end of life and their relatives. Little is known about HCAs attitudes towards caring for a dying person and how aspects such as education, age, earlier care experiences, care education and experience of caring for dying older people affect their attitudes. The aim was to describe HCAs' attitudes towards the care of dying persons living in their ordinary homes. This cross-sectional study used the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) for data collection during December 2017 and January 2018, and descriptive statistics and regression analysis for data analysis. The participants were HCAs (n = 127, 96% of those eligible) in a municipality in central Sweden. An overall positive attitude was reported. About 32% lacked formal HCA education although 93% had experience of interacting with a dying person. Age, HCA education, internal palliative care education, number of years' experience and previous experience of caring for a dying person were independently associated with HCAs' attitudes. In the multivariate regression analysis, age and years of experience were the only significant predictors of HCAs' attitudes towards caring for dying care recipients. Young employees without HCA education and experience of a dying person might be vulnerable in situations involving caring for a dying person. Communicating about death and dying, forming a relationship with the care recipient and the family, and providing care when a person is dying can be challenging. Implications: Young employees without HCA education and experience of interacting with a dying person needs to be prepared for the situation. This needs to be considered by stakeholders and social and healthcare organisations.

  • 7.
    Eriksson, Linda Victoria
    et al.
    Karolinska institutet; Karolinska universitetssjukhuset.
    Holmberg, Katarina
    Karolinska institutet; Sophiahemmet högskola.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wengström, Yvonne
    Karolinska institutet; Karolinska universitetssjukhuset.
    Bergkvist, Karin
    Karolinska institutet; Sophiahemmet högskola.
    Winterling, Jeanette
    Karolinska institutet; Karolinska universitetssjukhuset.
    Symptom Burden and Recovery in the First Year After Allogeneic Hematopoietic Stem Cell Transplantation2023In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 46, no 1, p. 77-85Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden.

    OBJECTIVE: The aim of this study was to examine patient-reported symptom burden in the first year after allo-HSCT and whether a high symptom burden 4 months after allo-HSCT predicts recovery, that is, general health and sick leave, 1 year after transplantation.

    METHODS: Allo-HSCT patients aged 18 to 65 years were included (n = 189). Questionnaire data were collected on admission to the allo-HSCT unit, as well as 4 and 7 months and 1 year after allo-HSCT. Logistic regression evaluated relationships between demographic characteristics, chronic graft-versus-host disease, physical activity, and a high symptom burden.

    RESULTS: Tiredness, susceptibility to infection, disinterest in sex, and physical weakness remained the most frequent symptoms, while distressing symptoms varied during the first year after allo-HSCT.Poor general health 1 year after allo-HSCT was associated with older age, low physical activity, and a high symptom burden 4 months after allo-HSCT. Full-time sick leave 1 year after allo-HSCT was associated with chronic graft-versus-host disease, low physical activity, and a high symptom burden 4 months after transplantation.

    CONCLUSIONS: Experiencing a high symptom burden 4 months after allo-HSCT can affect recovery 1 year after transplantation. Furthermore, low physical activity 4 months after allo-HSCT can predict both general health and sick leave 1 year after transplantation.

    IMPLICATIONS FOR PRACTICE: Repeated symptom assessment, including experienced distress, is central for reducing overall symptom burden and supporting recovery after allo-HSCT.

  • 8.
    Fristedt, Sofi
    et al.
    Jönköping University; Lunds universitet.
    Grynne, Annika
    Jönköping University.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Browall, Maria
    Jönköping University; Göteborgs universitet.
    Registered nurses and undergraduate nursing students' attitudes to performing end-of-life care2021In: Nurse Education Today, ISSN 0260-6917, E-ISSN 1532-2793, Vol. 98, article id 104772Article in journal (Refereed)
    Abstract [en]

    Registered Nurses (RNs) are in the immediate position to provide End-of-life (EOL) care and counselling for patients and families in various settings. However, EOL-care often creates feelings of uncertainty and inadequacy linked to inexperience, lack of education, and attitude. To identify and describe factors associated with RNs' attitudes towards EOL-care, and to identify whether and how these attitudes differ from undergraduate nursing students' (UNSs) attitudes, a descriptive and comparative, quantitative study was performed. The FATCOD-instrument, focusing on attitude towards EOL-care, was used and the results analysed with descriptive and nonparametric statistics. In total, 287 RNs in 14 different specialist programmes, and 124 UNSs participated. A statistically significant difference (p = 0.032) was found in attitude towards EOL-care based on clinical experience. RNs in "Acute Care" and "Paediatric & Psychiatry Care" specialist programmes had a less positive attitude towards EOL-care (compared to RNs in other specialist programmes), while RNs attending the Palliative Care programme had the most positive attitudes. RNs and UNSs' scores differed statistically significantly in 17 out of 30 FATCOD variables. Finally, the results imply that there is a need for greater emphasis on further continuing education within EOL care for RNs working in all types of clinical specialities to encourage RNs talking about death and to enhance attitudes towards EOL care.

  • 9.
    Gransjön Craftman, Åsa
    et al.
    Sophiahemmet högskola.
    Swall, Anna
    Högskolan Dalarna.
    Båkman, Kajsa
    Föreningen Judiska Hemmet, Stockholm.
    Grundberg, Åke
    Sophiahemmet högskola.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Caring for older people with dementia reliving past trauma2020In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 27, no 2, p. 621-633Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The occurrence of behavioural changes and problems, and degree of paranoid thoughts, are significantly higher among people who have experienced extreme trauma such as during the Holocaust. People with dementia and traumatic past experiences may have flashbacks reminding them of these experiences, which is of relevance in caring situations. In nursing homes for people with dementia, nursing assistants are often the group of staff who provide help with personal needs. They have firsthand experience of care and managing the devastating outcomes of inadequate understanding of a person's past experiences.

    AIM: The aim was to describe nursing assistants' experiences of caring for older people with dementia who have experienced Holocaust trauma.

    RESEARCH DESIGN: A qualitative descriptive and inductive approach was used, including qualitative interviews and content analysis.

    PARTICIPANTS AND RESEARCH CONTEXT: Nine nursing assistants from a Jewish nursing home were interviewed.

    ETHICAL CONSIDERATIONS: The study was approved by the Regional Ethical Review Board, Stockholm.

    FINDINGS: The theme 'Adapting and following the survivors' expression of their situation' was built on two categories: Knowing the life story enables adjustments in the care and Need for flexibility in managing emotional expressions.

    DISCUSSION AND CONCLUSION: The world still witnesses genocidal violence and such traumatic experiences will therefore be reflected in different ways when caring for survivors with dementia in the future. Person-centred care and an awareness of the meaning of being a survivor of severe trauma make it possible to avoid negative triggers, and confirm emotions and comfort people during negative flashbacks in caring situations and environments. Nursing assistants' patience and empathy were supported by a wider understanding of the behaviour of people with dementia who have survived trauma.

  • 10.
    Hagelin, Carina Lundh
    et al.
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    Wengström, Yvonne
    Karolinska institutet.
    Runesdotter, Sara
    Stiftelsen Stockholms sjukhem.
    Fürst, Carl Johan
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    The psychometric properties of the Swedish Multidimensional Fatigue Inventory MFI-20 in four different populations.2007In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 46, no 1, p. 97-104Article in journal (Refereed)
    Abstract [en]

    The Multidimensional Fatigue Inventory (MFI-20) scale is widely used for measuring fatigue in cancer care. This questionnaire has been translated into Swedish and used in Swedish cancer populations, and the aim of this study was to test the validity and reliability of the Swedish version in four populations, with a total of 584 patients. The participants were classified into four groups: palliative cancer patients, cancer patients receiving radiation therapy, non-cancer outpatients, and a group of hospital staff. The MFI-20 consists of five subscales of fatigue: General Fatigue (GF), Physical Fatigue (PF), Reduced Motivation (RM), Reduced Activity (RA) and Mental Fatigue (MF). We have tested the convergent validity of the MFI-20 using the Category Ratio instrument (CR-10). The validity and the reliability of MFI-20 were acceptable. All subscales of the MFI-20 were correlated, and all were also correlated with the CR-10 score (p < or = 0.001). General Fatigue was highly correlated with Physical Fatigue for the three patient groups, but this was not the fact for healthy staff. Deleting some items increased Cronbach's alpha of the subscale to which these items belonged (where alpha measures the reliability of the results). The level of non-response was low (less than 1.2%) and there was no pattern to the items omitted. We conclude that the MFI-20 is a valid and reliable instrument for measuring fatigue in patients and in healthy individuals. The results support, to some extent, earlier findings and one item can be removed from the Swedish version of the MFI-20.

  • 11.
    Hagelin, Carina Lundh
    et al.
    Karolinska institutet, Stiftelsen Stockholms sjukhem.
    Wengström, Yvonne
    Tishelman, Carol
    Fürst, Carl Johan
    Nurses' experiences of clinical use of a quality of life instrument in palliative care.2007In: Contemporary Nurse: health care across the lifespan, ISSN 1037-6178, E-ISSN 1839-3535, Vol. 27, no 1, p. 29-38Article in journal (Refereed)
    Abstract [en]

    This pilot study explored how nursing staff experienced clinical use of a quality of life (QoL) instrument as complement to their standard assessment interview. Twenty-six of 36 Registered Nurses working in one palliative care service responded in writing to six open questions.We found that nurses described positive features in using the QoL instrument related to how it supported their professional role, eased therapeutic contact with patients, and in terms of the outcomes of its use. Others noted difficulties incorporating the tool into the framework of their traditional nursing assessment, noting instrument and situation-specific limitations, with attitudes and comfort with the questionnaire affecting its use. Clinical use of QoL tools may be facilitated by emphasizing their role as a first screening assessment, and acknowledging and supporting the importance of clinical expertise and the patient-nurse relationship in further more focussed assessments and nursing care.

  • 12.
    Henoch, Ingela
    et al.
    Göteborgs universitet.
    Carlander (Goliath), Ida
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Holm, Maja
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    James, Inger
    Örebro universitet.
    Sarenmalm, Elisabeth Kenne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Skaraborgs sjukhus.
    Lundh Hagelin, Carina
    Karolinska institutet; Sophiahemmet högskola; Stockholms sjukhem.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sandgren, Anna
    Jönköping university; Linnéuniversitetet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Palliative Care Research: A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 20122016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 1, p. 5-25Article, review/survey (Refereed)
    Abstract [en]

    BACKGROUND: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.

    METHODS: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.

    RESULTS: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.

    CONCLUSIONS: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.

  • 13.
    Henoch, Ingela
    et al.
    Göteborgs universitet; Angereds närsjukhus.
    Melin-Johansson, Christina
    Göteborgs universitet; Mittuniversitetet.
    Bergh, Ingrid
    Högskolan i Skövde.
    Strang, Susann
    Göteborgs universitet; Angereds närsjukhus.
    Ek, Kristina
    Högskolan i Skövde.
    Hammarlund, Kina
    Högskolan i Skövde.
    Lundh Hagelin, Carina
    Sophiahemmets högskola; Stockholms sjukhem; Karolinska institutet.
    Westin, Lars
    Högskolan i Skövde.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus.
    Browall, Maria
    Högskolan i Skövde; Karolinska institutet.
    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.

  • 14.
    Holmberg, Katarina
    et al.
    Karolinska Institutet; Sophiahemmet högskola.
    Bergkvist, Karin
    Karolinska Institutet; Sophiahemmet högskola.
    Adalsteinsdóttir, Solveig
    Karolinska universitetssjukhuset.
    Wengström, Yvonne
    Karolinska Institutet; Karolinska universitetssjukhuset.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Nursing as a balancing act in allogeneic hematopoietic cell transplantation: Nurses' experiences through participation in workshops2023In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 63, article id 102300Article in journal (Refereed)
    Abstract [en]

    Purpose

    Registered nurses have a key role in supporting patients during the trajectory of allogeneic hematopoietic cell transplantation (allo-HCT). However, the circumstances for performing nursing are not previously outlined therefore the purpose of this study was to explore the conditions for nursing care in allo-HCT.

    Method

    An explorative design, inspired by Experienced based co-design was used to gather experiences, thoughts and visions of nursing care in allo-HCT by means of workshops. Thematic analysis was applied to analyse the data.

    Result

    An overarching theme that was defined from the data was nursing as a balancing act and illustrating conditions for performing nursing in a highly medical-technical environment. The theme included three sub-themes: Fragmented care vs holistic care outlining how the holistic approach to care disappeared when the care became fragmented; Proximity vs distance illuminating the balance between seeing the patient as an independent person despite illness and the need for support; Teamwork vs stand-alone demonstrating the difficulties inherent in adapting to both teamwork and independence in nursing.

    Conclusion

    This study shows that the conditions for RNs and nursing care in allo-HCT care is to balance tasks and approach towards the patient and themselves. RNs must weigh and balance what is most important in the moment and where something else often has to be put aside. It is difficult for RNs to find the time to plan each patient's care and to support the patient in the way they see as most optimal to prepare for discharge, self-care and rehabilitation.

  • 15.
    Jervaeus, Anna
    et al.
    Karolinska institutet.
    Fritzell, Kaisa
    Karolinska institutet.
    Lundh-Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Vogelsang, Ann-Christin von
    Karolinska institutet; Karolinska universitetsjukhuset.
    Does the Time Trade-off Method Reflect Health-Related Quality of Life?: A Mixed Methods Analysis of Preference Measures 10 Years After Aneurysmal Subarachnoid Hemorrhage2019In: World Neurosurgery, ISSN 1878-8750, E-ISSN 1878-8769, Vol. 126, p. 11-20Article in journal (Refereed)
    Abstract [en]

    Objective: To investigate if the time trade-off (TTO) method reflects health-related quality of life (HRQoL) 10 years after an aneurysmal subarachnoid hemorrhage (aSAH).

    Methods: A cross-sectional study with a mixed-methods approach was used to follow up 208 patients treated for aSAH. Data were collected with intramethod mixing; the quantitative data consisted of the EQ-5D-3L instrument and a TTO question, and the qualitative data comprised motivations to the TTO answer. The quantitative data were analyzed statistically and comparisons were made between participants willing to trade off years and those not willing to trade off years. The qualitative data were merged in a matrix and analyzed with manifest content analysis.

    Results: Participants willing to trade off years scored significantly lower HRQoL, and the correlation between EQ-5Dindex and EQ VAS to TTO values were rs = 0.369 (P < 0.001) and rs = 0.345 (P < 0.001), respectively. In the content analysis, 4 categories emerged: perceived full health or satisfactory life; adaptability and managing strategies; the importance of hope and meaning in life; and unacceptable changes do not make life worth living. The results showed that several reasons other than health status were evident when expressing the willingness to trade off or not trade off life-years.

    Conclusions: Individuals willing to trade off years showed significantly poorer HRQoL; however the TTO method did not seem to fully reflect HRQoL. Most participants did not want to trade off years, despite their living with severe disability, making it difficult to fully rely on the TTO method in evaluation of medical outcome.

  • 16.
    Klarare, Anna
    et al.
    Karolinska institutet; Sophiahemmet Högskola.
    Fossum, Bjöörn
    Sophiahemmet Högskola; Karolinska institutet.
    Fürst, Carl Johan
    Karolinska institutet; Lunds universitet.
    Lundh Hagelin, Carina
    Karolinska institutet; Sophiahemmet Högskola.
    Translation and cultural adaptation of research instruments - guidelines and challenges: An example in FAMCARE-2 for use in Sweden2015In: Informatics for Health and Social Care, ISSN 1753-8157, E-ISSN 1753-8165, Vol. 40, no 1, p. 67-78Article in journal (Refereed)
    Abstract [en]

    Background: Assessing and evaluating health care is important, and an abundance of instruments are developed in different languages. Translating existing, validated instruments is demanding and calls for adherence to protocol.

    Purpose: The purpose of this study was to translate and culturally adapt the FAMCARE-2 scale for use in Sweden.

    Methods: Traditional back-translation and the decentering stance were utilized and assessed. Experts in palliative care clinic and research were involved; the FAMCARE-2 instrument was discussed with family caregivers and content validity was assessed by experienced health professionals.

    Results: Significant discrepancies were not revealed by back-translation. Using the decentering stance gave reliable structure and opportunities for reflection throughout the translation process.

    Discussion: Translating an existing instrument into a second language requires interpretation and adaptation more than a naive translation. The back-translation process may be enhanced if the decentering stance is adopted.

  • 17.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fossum, Bjöörn
    Sophiahemmet Högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Team type, team maturity and team effectiveness in specialized palliative home care: an exploratory questionnaire study2019In: Journal of Interprofessional Care, ISSN 1356-1820, E-ISSN 1469-9567, Vol. 33, no 5, p. 504-511Article in journal (Refereed)
    Abstract [en]

    To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.

  • 18.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Lind, Susanne
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fossum, Bjöörn
    Sophiahemmet högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Leadership in specialist palliative home care teams: A qualitative study2020In: Journal of Nursing Management, ISSN 0966-0429, E-ISSN 1365-2834, Vol. 28, no 1, p. 102-111Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.

    BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs.

    METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.

    RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities.

    CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size.

    IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

  • 19.
    Klarare, Anna
    et al.
    Karolinska institutet & Sophiahemmet Högskola.
    Lundh Hagelin, Carina
    Karolinska institutet & Sophiahemmet Högskola.
    Fürst, Carl Johan
    Karolinska institutet & Lunds universitet.
    Fossum, Bjöörn
    Karolinska institutet & Sophiahemmet Högskola.
    Team interactions in specialized palliative care teams: a qualitative study2013In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 16, no 9, p. 1062-1069Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned.

    AIM: The aim was to explore team interaction among team members in specialized palliative care teams.

    DESIGN: Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. Setting/participants: Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included.

    RESULTS: Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care.

    CONCLUSION: Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers.

  • 20.
    Klarare, Anna
    et al.
    Karolinska institutet; Sophiahemmet Högskola.
    Rasmussen, Birgit, H.
    Lunds universitet.
    Fossum, Bjöörn
    Sophiahemmet Högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet; Karolinska institutet.
    Hansson, Johan
    Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet Högskola; Stiftelsen Stockholms sjukhem; Karolinska institutet.
    Experiences of security and continuity of care: patients' and families' narratives about the work of specialized palliative home care teams2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 2, p. 181-189Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Those who are seriously ill and facing death are often li ing with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.

    OBJECTIVE: Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).

    METHOD: A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.

    RESULTS: Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.

    SIGNIFICANCE OF RESULTS: Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

  • 21.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Rasmussen, Birgit H.
    Lunds universitet.
    Fossum, Bjöörn
    Sophiahemmet högskola; Karolinska institutet; Södersjukhuset.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, p. 1-9, article id e12948Article in journal (Refereed)
    Abstract [en]

    Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

  • 22.
    Klarare Ljungberg, Anna
    et al.
    Sophiahemmet Högskola, Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet Högskola, Karolinska institutet.
    Möjligheter & utmaningar för teamarbete i palliativ vård2013In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 30, no 2, p. 47-50Article in journal (Other (popular science, discussion, etc.))
  • 23.
    Klasson, Caritha
    et al.
    Karolinska institutet; Stiftelsen Stockholms sjukhem.
    Helde Frankling, Maria
    Karolinska institutet; Stiftelsen Stockholms sjukhem.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Björkhem-Bergman, Linda
    Karolinska institutet; Stiftelsen Stockholms sjukhem.
    Fatigue in Cancer Patients in Palliative Care: A Review on Pharmacological Interventions.2021In: Cancers, ISSN 2072-6694, Vol. 13, no 5, article id 985Article, review/survey (Refereed)
    Abstract [en]

    Fatigue is one of the most distressing symptoms experienced by cancer patients. The suggested biological mechanism for cancer related fatigue (CRF) includes immune activation triggered by tumor tissue or by anticancer treatment but other mechanisms have also been proposed. Previous large meta-analysis of interventions on fatigue focuses mostly on patients early in the disease trajectory, with only one tenth of included studies performed in palliative cohorts. The aim of this narrative review is therefore to present a background on CRF with focus on the palliative setting. A summary of recent randomized, controlled trials on pharmacological interventions on CRF in palliative care is presented, including studies on psychostimulants, corticosteroids, testosterone and melatonin. Interestingly, in several of these studies there was a positive and similar effect on fatigue in both the intervention and the placebo arm-indicating an important placebo effect for any pharmacological treatment. In addition, studies on dietary supplements and on pharmacological complementary medicines are discussed. To conclude, the evidence is still weak for using pharmacological treatments on CRF in palliative care patients-although methylphenidate and corticosteroids might be considered.

  • 24.
    Klasson, Caritha
    et al.
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Clinical Geriatrics, Karolinska Institutet; Palliative Medicine, Stockholms Sjukhem Foundation.
    Helde Frankling, Maria
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Clinical Geriatrics, Karolinska Institutet; Palliative Medicine, Stockholms Sjukhem Foundation.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Neurobiology, Care Sciences and Society (NVS), Division of Nursing, Karolinska Institutet.
    Björkhem-Bergman, Linda
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Clinical Geriatrics, Karolinska Institutet; Palliative Medicine, Stockholms Sjukhem Foundation.
    Fatigue in Cancer Patients in Palliative Care: A Review on Pharmacological Interventions2021In: Cancers, ISSN 2072-6694, Vol. 13, no 5, article id 985Article, review/survey (Refereed)
    Abstract [en]

    Fatigue is one of the most distressing symptoms experienced by cancer patients. The suggested biological mechanism for cancer related fatigue (CRF) includes immune activation triggered by tumor tissue or by anticancer treatment but other mechanisms have also been proposed. Previous large meta-analysis of interventions on fatigue focuses mostly on patients early in the disease trajectory, with only one tenth of included studies performed in palliative cohorts. The aim of this narrative review is therefore to present a background on CRF with focus on the palliative setting. A summary of recent randomized, controlled trials on pharmacological interventions on CRF in palliative care is presented, including studies on psychostimulants, corticosteroids, testosterone and melatonin. Interestingly, in several of these studies there was a positive and similar effect on fatigue in both the intervention and the placebo arm—indicating an important placebo effect for any pharmacological treatment. In addition, studies on dietary supplements and on pharmacological complementary medicines are discussed. To conclude, the evidence is still weak for using pharmacological treatments on CRF in palliative care patients—although methylphenidate and corticosteroids might be considered.

  • 25.
    Klasson, Caritha
    et al.
    Karolinska institutet.
    Helde Frankling, Maria
    Karolinska institutet; Karolinska universitetssjukhuset.
    Warnqvist, Anna
    Karolinska institutet.
    Sandberg, Carina
    Stockholms sjukhem.
    Nordström, Marie
    Stockholms sjukhem.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Björkhem-Bergman, Linda
    Karolinska institutet; Stockholms sjukhem.
    Sex Differences in the Effect of Vitamin D on Fatigue in Palliative Cancer Care: A Post Hoc Analysis of the Randomized, Controlled Trial 'Palliative-D'2022In: Cancers, ISSN 2072-6694, Vol. 14, no 3, article id 746Article in journal (Refereed)
    Abstract [en]

    In the randomized, placebo-controlled, double-blind trial 'Palliative-D', vitamin D treatment of 4000 IE/day for 12 weeks reduced opioid use and fatigue in vitamin-D-deficient cancer patients. In screening data from this trial, lower levels of vitamin D were associated with more fatigue in men but not in women. The aim of the present study was to investigate possible sex differences in the effect of vitamin D in patients with advanced cancer, with a specific focus on fatigue. A post hoc analysis of sex differences in patients completing the Palliative-D study (n = 150) was performed. Fatigue assessed with the Edmonton Symptom Assessment Scale (ESAS) was reduced in vitamin-D-treated men; -1.50 ESAS points (95%CI -2.57 to -0.43; p = 0.007) but not in women; -0.75 (95%CI -1.85 to 0.36; p = 0.18). Fatigue measured with EORTC QLQ-C15-PAL had a borderline significant effect in men (-0.33 (95%CI -0.67 to 0.03; p = 0.05)) but not in women (p = 0.55). The effect on fatigue measured with ESAS in men remained the same after adjustment for opioid doses (p = 0.01). In conclusion, the positive effect of the correction of vitamin D deficiency on fatigue may be more pronounced in men than in women. However, studies focused on analyzing sex differences in this context must be performed before firm conclusions can be drawn.

  • 26.
    Klasson, Caritha
    et al.
    Karolinska institutet; ASIH Stockholm Södra.
    Helde-Frankling, Maria
    Karolinska institutet; ASIH Stockholm Södra.
    Sandberg, Carina
    Stockholms sjukhem.
    Nordström, Marie
    Stockholms sjukhem.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Björkhem-Bergman, Linda
    Karolinska institutet; Stockholms sjukhem.
    Vitamin D and Fatigue in Palliative Cancer: A Cross-Sectional Study of Sex Difference in Baseline Data from the Palliative D Cohort2021In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 24, no 3, p. 433-437Article in journal (Refereed)
    Abstract [en]

    Background: Fatigue is one of the most distressing symptoms in patients with advanced cancer. Previous studies have shown an association between low vitamin D levels and fatigue.

    Objectives: The aim of this study was to investigate the association between vitamin D levels and self-assessed fatigue in cancer patients admitted to palliative care, with focus on possible sex differences.

    Design: This is a cross-sectional study. Subjects: Baseline data from 530 screened patients, 265 women and 265 men, from the randomized placebo-controlled trial "Palliative-D" were analyzed.

    Measurements: Vitamin D status was measured as 25-hydroxyvitamin D (25-OHD) and fatigue was assessed with EORTC-QLQ-PAL15 and with Edmonton Symptom Assessment System (ESAS).

    Results: In men, there was a significant correlation between 25-OHD and fatigue measured with the "Tiredness question" (Q11) in EORTC-QLQ-PAL15 (p < 0.05), where higher 25-OHD levels were associated with less fatigue. No correlation between 25-OHD and fatigue was seen for women. Fatigue measured with ESAS did not show any significant association with 25-OHD levels neither in men nor in women.

    Conclusion: Low vitamin D levels were associated with more fatigue in men but not in women. The study underscores the importance of subgroup analysis of men and women when evaluating the effect of vitamin D in clinical trials since the effect may differ between the sexes. The ongoing "Palliative-D study" will reveal whether vitamin D supplementation may counteract fatigue in both men and women.

    ClinicalTrial.gov: NCT03038516.

  • 27.
    Krook, Caroline
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Dunberger, Gail
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Living in limbo: Meanings of living with fecal incontinence as narrated by women after treatment for pelvic cancer2021In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 55, article id 102044Article in journal (Refereed)
    Abstract [en]

    PURPOSE: After pelvic radiotherapy, individuals suffer from loose stools and defecation urgency, often resulting in fecal incontinence (FI). Women who have been treated for pelvic cancer report FI as one of the most troubling symptoms, yet they avoid seeking healthcare due to shame and stigmatization. There is a lack of knowledge concerning women's lived experiences of FI in daily life after pelvic radiotherapy. The objective was to illuminate meanings of living with FI among women previously treated with radiotherapy for gynecological or rectal cancer.

    METHOD: Interviews were performed with ten women, treated with pelvic radiotherapy. Data were analyzed with phenomenological-hermeneutic method.

    RESULTS: Living with FI, was illuminated by one overarching main theme: Living in Limbo, consisting of two themes (including three sub-themes each): Living in uncertainty and Wanting to take part in life.

    CONCLUSION: Living with FI means that life is no longer the same as before the disease and treatment. The new life is lived in limbo, which means a daily struggle with insecurity because of the lack of control over one's body. It is also a struggle to take part in life, keep one's human dignity intact, experience meaning in life and can be and do what one wants.

  • 28. Lindqvist, Olav
    et al.
    Lundquist, Gunilla
    Dickman, Andrew
    Bükki, Johannes
    Lunder, Urska
    Hagelin, Carina Lundh
    Stiftelsen Stockholms sjukhem, Karolinska institutet, Sophiahemmet högskola.
    Rasmussen, Birgit H
    Sauter, Sylvia
    Tishelman, Carol
    Fürst, Carl Johan
    Four essential drugs needed for quality care of the dying: a Delphi-study based international expert consensus opinion.2013In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 16, no 1, p. 38-43Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care.

    MATERIAL AND METHODS: Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness.

    RESULTS: Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs.

    CONCLUSION: Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.

  • 29. Lindqvist, Olav
    et al.
    Tishelman, Carol
    Hagelin, Carina Lundh
    Karolinska institutet, Sophiahemmet högskola.
    Clark, Jean B
    Daud, Maria L
    Dickman, Andrew
    Benedetti, Franzisca Domeisen
    Galushko, Maren
    Lunder, Urska
    Lundquist, Gunilla
    Miccinesi, Guido
    Sauter, Sylvia B
    Fürst, Carl Johan
    Rasmussen, Birgit H
    Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study.2012In: PLoS Medicine, ISSN 1549-1277, E-ISSN 1549-1676, Vol. 9, no 2, article id e1001173Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.

    METHODS AND FINDINGS: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.

    CONCLUSIONS: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.

  • 30.
    Lundh Hagelin, Carina
    et al.
    Sophiahemmet högskola; Karolinska institutet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Fürst, Carl Johan
    Lunds universitet.
    The applicability of the translated Edmonton Symptom Assessment System: Revised [ESAS-r] in Swedish palliative care2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 4, p. 560-562Article in journal (Refereed)
    Abstract [en]

    The relief of symptoms, whether they are physical, psychological, social or existential, or whether the symptom relief promotes well-being, is very important in the care of people who are severely ill or at the end of life. The development of patient-reported outcome measures (PROM) in palliative care is particularly challenging, as patients often suffer from multiple symptoms and are easily fatigued. Great effort is made to develop short and effective measures to meet this challenge. The Edmonton Symptom Assessment System (ESAS) includes numeric rating scales, ranging from 0 to 10, for the assessment of nine symptoms common in patients affected by an advanced cancer, and with the option of adding a possible tenth patient-specific symptom [1]. The instrument is also widely used as a PROM among patients affected by non-malignant diseases in palliative care, and is used in both scientific studies and in clinical practice [2]. ESAS was first translated into Swedish in 1997/1998 (personal communication Prof. Strang, 2015) and has been used in research [3] and in clinical practice. However, there is no official Swedish translation of ESAS available on the developer’s website (http://www.palliative.org/), and several different versions exist in the country, nonetheless, its use is recommended by Swedish national regulatory documents [4,5] and in both local and national guidelines for palliative care. ESAS was revised to the ESAS-r scale in 2011 [6], due to identified concerns about potentially confusing items, and the possibility of unintentionally reversing the scores of some items. Therefore, we decided to translate, culturally adapt and evaluate ESAS-r for use among patients and health care professionals in Sweden.

  • 31.
    Lundh Hagelin, Carina
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Melin Johansson, Christina
    Ek, Kristina
    Henoch, Ingela
    Österlind, Jane
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Browall, Maria
    Undervisning om döende och död: En nationell kartläggning av palliativ vård i svenskasjuksköterskeprogram (nr 90)2022Conference paper (Refereed)
    Abstract [sv]

    Bakgrund: Antalet människor som drabbas av sjukdomar och behöver palliativ vård kommer öka världen över. Sjuksköterskor är i position för avgörande insatser riktade för både patient och närstående. Kunskap finns om stora variationer i utbildning om palliativ vård i sjuksköterskeutbildningar i Sverige medan kunskap om hur palliativ vård ingår i utbildningsplaner och hur undervisningen utformas är bristfällig.

    Syfte: Att undersöka omfattning och innehåll, samt vilka pedagogiska strategier som används för utbildning om palliativ vård i sjuksköterskeprogram i Sverige. Dessutom att utforska erfarenheterna hos lärare om att undervisa om palliativ vård.

    Metod: En studie med mixad design genomföres. Alla 24 universitet som ansvarar för att tillhandahålla sjuksköterskeutbildning i Sverige deltog genom en lärare med kunskap om utbildningens innehåll. Beskrivande statistik användes för att analysera kvantitativa data och innehållsanalys för kvalitativa data.

    Resultat: Endast ett fåtal sjuksköterskeprogram i Sverige inkluderade en specifik kurs om palliativ vård i sina utbildningsplaner. Lärare upplevde sig tvungna att konkurrera med andra områden inom utbildningen för att undervisa om palliativ vård. Utbildningen som gavs om palliativ vård var främst teoretisk och lärare använde olika pedagogiska strategier och den egna yrkesmässiga och personliga erfarenheter för att stödja studenterna att förstå palliativ vård. Vissa områden, som döende och död var svåra ämnen att lära ut.

    Betydelse: Utbildning om palliativ vård är viktig för att klara kommande behov. Studien visar att lärare ofta strävar på egen hand för att utveckla studenters förståelse genom olika undervisningsstrategier och måste också konkurrera med andra områden inom utbildningen. Kartläggningen kan vara ett stöd för enskilda lärare och lärosäten för att möjliggöra utbildning om palliativ vård. Utbildning om palliativ vård måste prioriteras inte bara av enskilda lärosäten utan också på nationell nivå.

  • 32.
    Lundh Hagelin, Carina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska Institutet.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Mittuniversitetet.
    Ek, Kristina
    Högskolan i Skövde.
    Henoch, Ingela
    Göteborgs universitet.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Browall, Maria
    Jönköping University; Göteborgs universitet.
    Teaching about death and dying: A national mixed‐methods survey of palliative care education provision in Swedish undergraduate nursing programmes2022In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 36, no 2, p. 545-557Article in journal (Refereed)
    Abstract [en]

    Background: In coming decades, the number of people affected by illnesses who need palliative care will rise worldwide. Registered Nurses are in a central position in providing this care, and education is one of the necessary components for meeting coming requirements. However, there is a lack of knowledge about palliative care in undergraduate nursing education curricula, including the extent of the education provided and the related pedagogical methods.

    Aim: The aim was to investigate the extent, content and pedagogical methods used and to explore lecturers’ experiences of being responsible for teaching and learning about palliative care for undergraduate nursing students on nursing programmes at Swedish universities.

    Setting: All 24 universities responsible for providing undergraduate nursing education in Sweden participated.

    Participants: One lecturer with in-depth knowledge about palliative care or end-of-life care education participated in the quantitative (n = 24) and qualitative (n = 22) parts of the study.

    Method: A mixed-method research study with an explorative design was used. Descriptive statistics were used to analyse quantitative data, and content analysis for qualitative, with both also analysed integratively.

    Results: Few undergraduate nursing programmes included a specific course about palliative care in their curricula, however, all universities incorporated education about palliative care in some way. Most of the palliative care education was theoretical, and lecturers used a variety of pedagogical strategies and their own professional and personal experience to support students to understand the palliative care approach. Topics such as life and death were difficult to both learn and teach about.

    Conclusions: There is a need for substantial education about palliative care. Lecturers strive on their own to develop students’ understanding and increase the extent of palliative care education with innovative teaching strategies, but must compete with other topics. Palliative care teaching must be prioritised, not only by the universities, but also by the national authority.

  • 33.
    Lundh Hagelin, Carina
    et al.
    Sophiahemmet högskola; Stockholms sjukhem; Karolinska institutet.
    Melin-Johansson, Christina
    Mittuniversitetet; Göteborgs universitet.
    Henoch, Ingela
    Göteborgs universitet; Angereds närsjukhus, Göteborg.
    Bergh, Ingrid
    Högskolan i Skövde.
    Ek, Kristina
    Högskolan i Skövde.
    Hammarlund, Kina
    Högskolan i Skövde.
    Prahl, Charlotte
    Ersta Sköndal University College, Department of Health Care Sciences.
    Strang, Susann
    Göteborgs universitet.
    Westin, Lars
    Högskolan i Skövde.
    Österlind, Jane
    Ersta Sköndal University College, Department of Health Care Sciences.
    Browall, Maria
    Högskolan i 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.

  • 34.
    Lundh Hagelin, Carina
    et al.
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    Seiger, Ake
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    Fürst, C J
    Stiftelsen Stockholms sjukhem, Karolinska institutet.
    Quality of life in terminal care--with special reference to age, gender and marital status.2006In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 14, no 4, p. 320-8Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: This study was conducted to explore symptoms, other quality of life (QoL) aspects and impact of age, gender, marital status, cancer diagnosis and time of survival in patients with advanced cancer admitted to palliative care.

    PATIENTS AND METHODS: A cross-sectional study of 278 cancer patients completing the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 at referral to palliative care.

    MAIN RESULTS: Gynaecological and gastro-intestinal tract cancers were the most common. Mean age was 67 years; 62% were female. Median survival was 43 days and 39% lived less than 30 days. Patients reported impaired general QoL and high occurrence of symptoms (44 and 100% for diarrhoea and fatigue, respectively). Fatigue, appetite loss and dyspnoea were reported as most severe (mean values of 80, 59 and 51, respectively, 0-100 scales). Married/cohabiting patients and younger patients reported lower functional abilities and more symptoms. No impact of diagnoses on QoL parameters was found. Patients closest to death did not differ significantly from those with longer time to live in social functioning.

    CONCLUSION: Young and married patients may be at higher risk for perceived low quality of life at the end of life. EORTC QLQ-C30 could be used as a clinical tool for screening of symptoms and reduced functioning in palliative care, but may not be appropriate for use in the most severely ill patients. Limitations of the instrument and the need for robust measurements of patient mix are discussed. Proxy ratings of physical symptoms and nurse responsibility to include QoL assessment in daily practice would increase attrition and decrease selection bias.

  • 35.
    Lundh Hagelin, Carina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Tishelman, Carol
    Karolinska institutet; University of Southampton, United Kingdom.
    Rasmussen, Birgit H.
    Lunds universitet; Region Skåne.
    Lindqvist, Olav
    Den komplexa vården under livets sista dagar: Det räcker inte med fyra hörnstenar2020In: Palliativ vård: Begrepp och perspektiv i teori och praktik / [ed] Birgitta Andershed; Britt-Marie Ternestedt, Lund: Studentlitteratur AB, 2020, 2, p. 457-467Chapter in book (Other academic)
  • 36.
    Lundh Hagelin, Carina
    et al.
    Stiftelsen Stockholms sjukhem; Karolinska institutet.
    Wengström, Y
    Karolinska Institutet; University of Stirling.
    Ahsberg, E
    Socialstyrelsen.
    Fürst, C J
    Stiftelsen Stockholms sjukhem; Karolinska institutet.
    Fatigue dimensions in patients with advanced cancer in relation to time of survival and quality of life.2009In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 23, no 2, p. 171-8Article in journal (Refereed)
    Abstract [en]

    To understand the relation between fatigue and patients emotional situation at the end of life, this cross-sectional study aimed to explore the association between multidimensional aspects of fatigue, emotional functioning and quality of life (QoL) in patients with advanced cancer at the end of life. Patients with advanced cancer answered fatigue related measurements (Borg Category Ratio-10 scale, Multidimensional Fatigue Inventory-20, Swedish Occupational Fatigue Inventory and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30), when admitted for specialised palliative care. A total of 228 patients with a median length of survival of 63 days were included. In relation to time of survival, fatigue increased closer to death, in both global and multidimensional aspects, as well as the patient's experience of being sleepy. Marital status was found to affect the experience of fatigue in both global and multidimensional ratings of fatigue. The association between the experience of fatigue and feelings of being tense, worried, irritable or depressed and rated QoL decreased and was not evident closer to death. Fatigue in all dimensions increased, as patients got closer to death. The association between fatigue and both QoL and negative emotions faded away during the last days and weeks of life.

  • 37.
    Lundh Hagelin, Carina
    et al.
    Stiftelsen Stockholms sjukhem.
    Wengström, Yvonne
    Fürst, Carl Johan
    Patterns of fatigue related to advanced disease and radiotherapy in patients with cancer-a comparative cross-sectional study of fatigue intensity and characteristics.2009In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, no 5, p. 519-26Article in journal (Refereed)
    Abstract [en]

    GOALS OF WORK: This cross-sectional comparative study was designed to explore and describe the prevalence and patterns of cancer-related fatigue in patients with advanced cancer as well as patients undergoing curative radiotherapy. Another aim was to explore the association of anxiety and depression with fatigue.

    MATERIALS AND METHODS: Patients with an advanced stage of disease (n = 228) and patients receiving radiotherapy (n = 81) completed the Borg Category Ratio Scale, the Multidimensional Fatigue Inventory and the Hospital Anxiety and Depression Scale.

    MAIN RESULTS: Patients with advanced disease had an increased probability of experiencing all aspects of fatigue except for mental fatigue as compared to patients undergoing radiation, e.g., odds ratio 11.5 (CI 5.8-22.7) for physical fatigue. Higher scores for depression than for anxiety were reported when patients had high levels of fatigue, with 23% of the patients classified as anxious and 39% depressed.

    CONCLUSIONS: The present study was carried out in order to address a gap in research by comparing the multidimensional aspects of fatigue in different groups of cancer patients. It is the intensity of fatigue that seems to be related to the underlying exposure to radiation or to the level of disease burden rather than the different fatigue profiles, such as the relation between physical and mental aspects.

  • 38.
    Melin-Johansson, Christina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hagelin, Carina Lundh
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet.
    Ek, Kristina
    Bergh, Ingrid
    Högskolan i Skövde.
    Browall, Maria
    Högskolan i Skövde; Jönköping University.
    Undergraduate nursing students' transformational learning during clinical training.2018In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 24, no 4, p. 184-192Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Undergraduate nursing students encounter patients at the end of life during their clinical training. They need to confront dying and death under supportive circumstances in order to be prepared for similar situations in their future career.

    AIM: To explore undergraduate nursing students' descriptions of caring situations with patients at the end of life during supervised clinical training.

    METHODS: A qualitative study using the critical incident technique was chosen. A total of 85 students wrote a short text about their experiences of caring for patients at the end of life during their clinical training. These critical incident reports were then analysed using deductive and inductive content analysis.

    FINDINGS: The theme 'students' transformational learning towards becoming a professional nurse during clinical training' summarises how students relate to patients and relatives, interpret the transition from life to death, feel when caring for a dead body and learn end-of-life caring actions from their supervisors.

    IMPLICATIONS: As a preparation for their future profession, students undergoing clinical training need to confront death and dying while supported by trained supervisors and must learn how to communicate about end-of-life issues and cope with emotional stress and grief.

  • 39.
    Olsson Möller, Ulrika
    et al.
    Högskolan Kristianstad.
    Pranter, Christa
    Lunds universitet; Region Skåne.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Beck, Ingela
    Högskolan Kristianstad; Lunds universitet; Region Skåne.
    Malmström, Marlene
    Lunds universitet; Region Skåne.
    Fürst, Carl Johan
    Lunds universitet; Region Skåne.
    Rasmussen, Birgit H.
    Lunds universitet; Region Skåne.
    Using Cards to Facilitate Conversations About Wishes and Priorities of Patients in Palliative Care2020In: Journal of Hospice and Palliative Nursing, ISSN 1522-2179, E-ISSN 1539-0705, Vol. 22, no 1, p. 33-39Article in journal (Refereed)
    Abstract [en]

    To avoid discomfort, health care professionals may hesitate to pursue conversations about end of life with patients. Certain tools have the potential to facilitate smoother conversations in this matter. The objective was to explore the experiences of patients in palliative care in using statement cards to talk about their wishes and priorities. Forty-six cards with statements of wishes and priorities were developed and tested for feasibility with 40 participants, who chose the 10 most important cards and shared their thoughts about the statements and conversation. Data from individual interviews and field notes were analyzed using content analysis. One category describes practical aspects of using the cards including the relevance of the content and the process of sorting the cards. The second category describes the significance of using the cards including becoming aware of what is important, sharing wishes and priorities, and reflecting on whether wishes and priorities change closer to death. The cards helped raise awareness and verbalize wishes and priorities. All statements were considered relevant. The conversations focused not only on death and dying, but also on challenges in the participants' current life situation. For the most ill and frail participants, the number of cards needs to be reduced.

  • 40. Raijmakers, Natasja
    et al.
    Galushko, Maren
    Domeisen, Franzisca
    Beccaro, Monica
    Lundh Hagelin, Carina
    Sophiahemmet högskola, Karolinska universitetet.
    Lindqvist, Olav
    Popa-Velea, Ovidiu
    Romotzky, Vanessa
    Schuler, Stefanie
    Ellershaw, John
    Ostgathe, Christoph
    Quality indicators for care of cancer patients in their last days of life: literature update and experts' evaluation.2012In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 15, no 3, p. 308-16Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Quality indicators (QIs) are needed to monitor and to improve palliative care. Care of patients in the last days of life is a discrete phase of palliative care and therefore specific QIs are needed. This study aimed to identify and evaluate current QIs against which to measure future care of patients in the last days of life.

    METHODS: To identify QIs for patients in the last days of life an update of the literature and national guidelines was conducted. Subsequently, an international panel of palliative care experts was asked to evaluate the identified QIs: how well they describe care and how applicable they are for care in the last days of life. Also additional QIs were asked.

    RESULTS: In total, 34 QIs for care in the last days were identified in the literature and guidelines. The experts (response rate 58%) agreed with seven QIs as being good descriptors and applicable: concerning a home visit for the family following a patient's death, the presence of a dedicated family room, limited patients receiving chemotherapy, limited need for pain control, gastrointestinal symptoms, and communication from professional to patient and family. The experts also suggested 18 additional topics for QIs for the last days of life.

    CONCLUSION: Currently no definite set of QIs exist to describe quality of care of patients in their last days of life. New QIs that are focused on care for patients in their last days of life, their relatives, as well as their professional caregivers are needed.

  • 41.
    Schenell, Ramona
    et al.
    The Sahlgrenska Academy, Institute of health and care sciences, University of Gothenburg; Administration for the elderly, nursing and care, Department of Quality and development, The City of Gothenburg.
    Österlind, Jane
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Browall, Maria
    Faculty of caring sciences, work life and social welfare, department of caring sciences, University of Borås; Dep of Oncology, Inst of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg.
    Melin-Johansson, Christina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Health Care Sciences/Nursing Sciences, Mid Sweden University, Östersund.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
    Hjorth, Elin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Teaching to prepare undergraduate nursing students for palliative care: Nurse educators’ perspectives2023In: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, ISSN 1472-6955, Vol. 22, article id 338Article in journal (Refereed)
    Abstract [en]

    Background Education in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons. Despite awareness of the importance of palliative care education for nurses, there is a lack of knowledge on how to effectively convey this knowledge to students. The aim of the present study was to explore how teaching to prepare undergraduate nursing students for palliative care practice is conducted in Sweden.

    Methods Educators from 22 Bachelor of Science nursing programmes in Sweden were interviewed about how they conducted palliative care education, with a focus on teaching situations that have been successful or less successful. The interviews were transcribed and analysed using qualitative inductive content analysis.

    Results Educators described that they play a crucial role in preparing undergraduate nursing students to face death and dying and to care for persons at the end of life. In the main theme, “Transforming person-centred palliative care into student-centred education”, educators described how they incorporated the person-centred palliative approach into their teaching. Educators used a dynamic style of teaching where they let the students’ stories form the basis in a co-constructed learning process. The educators trusted the students to be active partners in their own learning but at the same time they were prepared to use their expert knowledge and guide the students when necessary. Discussion and reflection in small groups was described as being essential for the students to achieve a deeper understanding of palliative care and to process personal emotions related to encountering dying and grieving individuals.

    Conclusions This study suggests that palliative care education for undergraduate nursing students benefits from teaching in smaller groups with room for discussion and reflection. Furthermore, gains are described relating to educators taking the role of facilitators rather than traditional lecturers, being flexible and ready to address students’ emotions. Educators also draw on their experiences as palliative care nurses in their teaching practices.

  • 42.
    Skedsmo, Karoline
    et al.
    Lovisenberg Diaconal University College, Oslo, Norway.
    Bingen, Hanne Maria
    Lovisenberg Diaconal University College, Oslo, Norway.
    Hofsø, Kristin
    Lovisenberg Diaconal University College, Oslo, Norway; Department of Postoperative and Intensive Care Nursing, Division of Emergencies and Critical Care, Oslo, University Hospital, Oslo, Norway.
    Steindal, Simen A.
    Institute of nursing, Faculty of Health Studies, VID Specialized University, Oslo, Norway; Lovisenberg Diaconal University College, Oslo, Norway.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute.
    Hilderson, Deborah
    Karel de Grote University College, Antwerpen, Belgium.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Oslo, Norway.
    Smis, Dieter
    GZA hospitals, Antwerp, Belgium.
    Stenseth, Hege Vistven
    Lovisenberg Diaconal University College, Oslo, Norway.
    Olaussen, Camilla
    Lovisenberg Diaconal University College, Oslo, Norway.
    Postgraduate nursing students’ experiences with simulation-based learning in palliative care education: A qualitative study2023In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 73, article id 103832Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to explore postgraduate palliative care nursing students' experiences with simulation-based learning focusing on communication skills, as a learning method in palliative care education.

    Background: Communication is one of several important competencies in palliative care and found to be challenging. Developing appropriate communication skills in palliative care requires education and practice. To provide postgraduate palliative care nursing students with the required knowledge and experience, practical and active learning approaches, such as simulation-based learning, can be applied. Several studies have explored undergraduate nursing students' experiences with simulation-based learning in palliative care. However, to our knowledge no studies have explored postgraduate palliative care nursing students` experiences with simulation-based learning focusing on communication skills in palliative care education.

    Design: An exploratory descriptive design.

    Methods: A qualitative method was employed. Three focus group interviews were conducted in May 2022 using videoconferencing (Zoom) with 11 postgraduate palliative care nursing students, eight of whom wrote reflective notes. Data were analysed using systematic text condensation.

    Results: Three categories were identified in the data analysis: 1) from uncertain expectations to the real experience of simulation-based learning; 2) being a skilled professional in everyday life versus being observed in the scenarios; and 3) the balance between self-confidence and challenges in experiencing professional development and mastery.

    Conclusions: Postgraduate palliative care nursing students seemed to experience anxiety towards simulation-based learning in palliative care education, as well as variable expectations for the approach. This could be due to their unfamiliarity with the learning method. The need for repetition was underlined and the students indicated that they would like to be able to participate in several simulation sessions to familiarise themselves with the approach. The contrast between being a skilled professional in everyday life and the pressure of being observed and judged in the scenarios was an important finding. Students outlined the desire to feel safe, but also highlighted the importance of being challenged to experience professional development and enhanced mastery. Generally, the findings indicate that academic and psychological safety should be a focus during simulation-based learning and instructors should understand that students may have varied learning strategies, divergent learning experiences and shifting beliefs in their own competencies.

  • 43.
    Skedsmo, Karoline
    et al.
    Lovisenberg Diaconal University College, Oslo, Norway; Department of Otorhinolaryngology, Head and Neck Surgery, Oslo University Hospital, Oslo, Norway.
    Nes, Andréa Aparecida Gonçalves
    Lovisenberg Diaconal University College, Oslo, Norway.
    Stenseth, Hege Vistven
    Lovisenberg Diaconal University College, Oslo, Norway.
    Hofsø, Kristin
    Lovisenberg Diaconal University College, Oslo, Norway; Department of Research and Development, Division of Emergencies and Critical Care, Oslo University Hospital, Oslo, Norway.
    Larsen, Marie Hamilton
    Lovisenberg Diaconal University College, Oslo, Norway.
    Hilderson, Deborah
    Karel de Grote University College, Antwerp, Belgium.
    Smis, Dieter
    GZA Hospitals, Antwerp, Belgium.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
    Olaussen, Camilla
    Lovisenberg Diaconal University College, Oslo, Norway.
    Solberg, Marianne Trygg
    Lovisenberg Diaconal University College, Oslo, Norway.
    Bingen, Hanne Maria
    Faculty of Health Studies, VID Specialized University, Oslo, Norway.
    Ølnes, Mia Alexandra
    Lovisenberg Diaconal University College, Oslo, Norway.
    Steindal, Simen A.
    Lovisenberg Diaconal University College, Oslo, Norway; Faculty of Health Studies, VID Specialized University, Oslo, Norway.
    Simulation-based learning in palliative care in postgraduate nursing education: A scoping review2023In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 22, no 1, article id 30Article, review/survey (Refereed)
    Abstract [en]

    Background: Nurses require advanced competence in palliative care, but they face wide variations in education and a shortage in opportunities for clinical placement. Simulation-based learning (SBL) can enable students to develop clinical skills, critical thinking and confidence. No scoping reviews to date have mapped the use of SBL in palliative care within postgraduate nursing education.

    Methods: The aim of this scoping review was to systematically map published studies on the use of SBL in palliative care in postgraduate nursing education. A scoping review was conducted using Arksey and O'Malley's (Int J Soc Res Meth 8(1):19-32, 2005) methodological framework. A systematic and comprehensive search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Education Resources Information Center (ERIC), Ovid MEDLINE, Ovid EMBASE, Allied and Complementary Medicine and PsycINFO was performed for studies published between January 2000 and April 2022. Two authors independently assessed papers for inclusion and extracted data. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. The protocol was registered on the Open Science Framework.

    Results: This review includes 10 studies. Three thematic groupings were identified: enhanced understanding of the importance of teamwork, interdisciplinarity and interpersonal skills; preparedness and confidence in one's ability to communicate during emotionally challenging situations; and impact and relevance to one's own clinical practice.

    Conclusions: The use of SBL in palliative care in postgraduate nursing education seems to enhance students' understanding of the importance of teamwork and interdisciplinarity. The review shows contradictory results regarding whether SBL in palliative care increases students' confidence in their communication skills. Postgraduate nursing students experienced personal growth after participating in SBL. Because our findings indicate that limited research has been conducted within this field, future research should (1) explore postgraduate nursing students' experiences with SBL in palliative care with a focus on more practical content such as symptom management, (2) examine the relevance and application of SBL in clinical practice, and (3) be reported in line with recommendations on the reporting of simulation research.

  • 44.
    Swall, Anna
    et al.
    Högskolan Dalarna.
    Craftman, Åsa
    Sophiahemmet högskola.
    Grundberg, Åke
    Sophiahemmet högskola.
    Wiklund, Eleonor
    Väliaho, Nina
    Hagelin, Carina Lundh
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Dog handlers' experiences of therapy dogs' impact on life near death for persons with dementia2019In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 25, no 2, p. 65-71Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:: Persons with dementia may have severe physical and psychological symptoms at the end of life. A therapy dog used in their care can provide comfort and relieve their anxiety. The dog handler guides the dog during the interaction with the patient.

    AIM:: To describe the impact of therapy dogs on people with dementia in the final stages of life from the perspective of the dog handler.

    METHODS:: Interviews were conducted and analysed using qualitative content analysis.

    FINDINGS:: The dog provides comfort and relief through its presence and by responding to the physical and emotional expressions of the dying person.

    CONCLUSIONS:: Interactions with dogs were found to have a positive impact on persons with dementia and eased the symptoms associated with end of life according to the dog handlers.

  • 45.
    Swall, Anna
    et al.
    Högskolan Dalarna.
    Ebbeskog, Britt
    Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet högskola; Karolinska institutet; Stockholms sjukhem.
    Fagerberg, Ingegerd
    Ersta Sköndal University College, Department of Health Care Sciences.
    'Bringing respite in the burden of illness': Dog handlers experience of visiting older persons with dementia together with a therapy dog2016In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 15-16, p. 2223-2231Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To illuminate meanings of the lived experiences of dog handlers' when visiting older persons with dementia with their therapy dog.

    BACKGROUND: Studies indicate that care of persons with dementia should focus on a person-centred approach with the person's interests in the centre. Animal-assisted therapy using a therapy dog in the care of persons with dementia has been shown to increase well-being and decrease problematic behaviours associated with the illness.

    DESIGN: A qualitative lifeworld approach was adopted for this study.

    METHODS: Data were collected from open-ended interviews with nine dog handlers, and the analysis conducted using the phenomenological hermeneutical method.

    RESULTS: The structural analysis resulted in one theme, 'Respite from the burden of illness for persons with dementia'.

    CONCLUSIONS: Visiting a person with dementia can be seen as an act of caring, providing temporary respite from their illness, and creating a special relationship between handler and patient. A therapydog visit can represent a moment of communion between the handler and the person with dementia.

    IMPLICATION FOR CLINICAL PRACTICE: Dog handlers use their skills and knowledge to promote a situation that reduces symptoms of illness and encourages healthier behaviour. The results of this study may be of interest to researchers, clinical practitioners, caregivers and dog handlers who care for persons with dementia using therapy dog teams on prescription as an alternative method to minimise behavioural and psychological symptoms of dementia.

  • 46.
    Swall, Anna
    et al.
    Karolinska Institutet.
    Ebbeskog, Britt
    Karolinska Institutet.
    Lundh Hagelin, Carina
    Sophiahemmet högskola.
    Fagerberg, Ingegerd
    Ersta Sköndal University College, Department of Health Care Sciences.
    Can therapy dogs evoke awareness of one's past and present life in persons with Alzheimer's disease?2014In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743Article in journal (Refereed)
  • 47.
    Swall, Anna
    et al.
    Högskolan Dalarna.
    Ebbeskog, Britt
    Karolinska institutet.
    Lundh Hagelin, Carina
    Karolinska institutet; Sophiahemmet högskola.
    Fagerberg, Ingegerd
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Stepping out of the shadows of Alzheimer's disease: A phenomenological hermeneutic study of older people with Alzheimer´s disease caring for a therapy dog.2017In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 12, no 1Article in journal (Refereed)
    Abstract [en]

    Purpose: Living with Alzheimer’s disease (AD) can involve a person being unable to recall and convey information in daily life. There are several ways to provide person-centred care to older people with AD, e.g. by empowering them in a situation. The use of animal-assisted therapy (AAT) with a therapy dog in the care of people with dementia is increasing, with the presence of a therapy dog being described as improving, among other things, the well-being and socialization of the person. The aim of this study was to illuminate meanings of care for people with AD in their encounters with a therapy dog.

    Method: The study used video-recorded observations of the person with AD and the dog. Data were transcribed and analysed using a phenomenological hermeneutic method.

    Results: The main theme was “Using one’s own resources and abilities as a human being”, which meant being the person one can be and distancing oneself from the symptoms of AD during the time with the dog.

    Conclusions: The feelings evoked in the people with AD included empathy and altruism, which allowed for a sense of joy and tenderness, which may induce a sense of self-worth, of being needed, and of being meaningful.

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  • 48.
    Swall, Anna
    et al.
    Karolinska Institutet.
    Fagerberg, Ingegerd
    Ersta Sköndal University College, Department of Health Care Sciences.
    Ebbeskog, Britt
    Karolinska Institutet.
    Lundh Hagelin, Carina
    Sophiahemmet högskola.
    A therapy dog’s impact on daytime activity and night-time sleep for older persons with Alzheimer’s disease - A case study2014In: Clinical Nursing Studies, Vol. 2, no 4Article in journal (Refereed)
  • 49.
    Wallin, Viktoria
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Rosenblad, Andreas
    Uppsala universitet, Karolinska institutet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Mattsson, Elisabet
    Marie Cederschiöld University, Department of Health Care Sciences. Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Registered nurses’ perceptions of food and mealtimes in palliative care: a cross-sectional studyIn: Article in journal (Refereed)
  • 50.
    Österlind, Jane
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Östensson, Ann-Charlotte
    Marie Cederschiöld University, Department of Health Care Sciences.
    Bisholt, Birgitta
    Röda korset högskola.
    Pusa, Susanne
    Umeå universitet.
    Melin-Johansson, Christina
    Mittuniversitetet.
    Lundh Hagelin, Carina
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    6 S-modellen för personcentrerad palliativ vård: En undersökning av personalens uppfattningar på vård-och omsorgsboende och i hemtjänst2023Conference paper (Other academic)
    Abstract [sv]

    Bakgrund: Palliativ vård innebär en holistisk vård av personer i alla åldrar. Syftet är att lindra lidande av fysisk, psykologisk, social eller existentiell/andlig natur. Döendet och döden är ofta omgärdade av tystnad, både i samhället i stort och bland vårdpersonal. Vårdpersonal kan känna sig obekväma vid tanken på döden. Djupare existentiella frågor undviks ofta genom att äldre personer inom hälso- och sjukvården avleds genom att prata om mer lättsamma samtalsämnen. Framtidens palliativa vård äger till stor del rum i hemmen och inom äldreomsorgen. 

    Frågeställning: Studien är en del av en större interventionsstudie, EDUC-PC studien, och omfattar baslinjedata från 6S-enkäten med fokus på hur personal inom äldreomsorgen uppfattar att de arbetar enligt ett personcentrerat palliativt förhållningssätt.  

    Metod: En kvantitativ ansats antogs. Enkäten som innehåller nio frågor skickades till 266 anställda varav 136 svarade.  Resultaten redovisas som deskriptiv statistik i form av antal, procenttal, med median (md) som centralt mått. 

    Resultat: Resultaten visar att den vård som ges uppfattas som bra eller mycket bra av personalen men att uppfattningarna varierar mellan olika yrkesgrupper. Innehållet i självbild, självbestämmande, sociala relationer och symtomlindring får alla höga poäng, medan de två existentiellt inriktade S:en; syntes och strategier, visar en större spridning mot lägre poäng.  

    Konklusion: Obalansen mellan de olika innehållen i 6S omvårdnadsmodellen visar att det finns brister i den palliativa omvårdnaden inom äldreomsorgen. Detta är tydligast när   de två S:en symtomlindring och strategier jämförs. Resultaten visar på ett behov av fortsatt fokus på äldre personers existentiella frågor inom äldreomsorgen.

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