| 1. |
- Klasson, Caritha, et al.
(författare)
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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'
- 2022
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Ingår i: Cancers. - : MDPI AG. - 2072-6694. ; 14:3
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Klasson, Caritha, et al.
(författare)
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Vitamin D and Fatigue in Palliative Cancer : A Cross-Sectional Study of Sex Difference in Baseline Data from the Palliative D Cohort
- 2021
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 24:3, s. 433-437
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Axelsson, Lena, et al.
(författare)
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End of life of patients treated with haemodialysis as narrated by their close relatives
- 2015
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 29:4, s. 776-784
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Axelsson, Lena
(författare)
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Living with haemodialysis close to death - patients' and close relatives' experiences
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to generate understanding and knowledge a bout the experiences of patients living with haemodialysis, and their close relati ves, near the end of life. In studies I and II we conducted a series of 31 qualitative interviews over a period of 12 months with 8 severely ill patients (aged 66–87) treated with haemodialysis. For study I the text of the interviews was analysed using phenomenological hermeneutics to describe and to el ucidate the meanings of being severely ill living with haemodialysis when nearing end of life. For study II the text was analysed using qualitative content analysis to describe inner thoughts and feelings relating to death and dying of these patients. For studies III and IV, we conducted 14 retrospective qualitative interviews with close relatives of deceased patients treated with haemodialysis about th eir experiences during end of the patient’s life. For paper III the interview text was analysed usi ng phenomenological hermeneu tics to describe and elucidate the meanings of being a close relative at the end of life of a severely ill family member treated with maintenance haemodialysis. For paper IV the text was analysed using qualitative content analysis to describe end of life for the patients from the perspective of their close relatives. The findings of study I suggest that being severely i ll and living with haemodialysis near the end of life means living with suffering from a deteriorating body, a high symptom burden, and dependence on advanced medical technology, simultaneously with r econciliation and well-being. The meanings of living with illness and dialysis are intertwined with the meanings of being old. Study II shows that thoughts and feelings about deat h and dying are significant and complex for those living with haemodialysis as they approach the end of life. Patients experience a multifaceted presence of death. Their awareness of approaching death may include their repressing of thoughts of death, not as denial, but to allow them to focus on living as fully as possible the time they have left. Study III shows that close relatives strive to maintain balance and well-being for themselves and for the patient, which we interpreted as their striving to regain balance, and inner equilibrium in their changed and challenged rhythm of life. Study IV shows that after gradual deterioration and increasing care needs, older patients in haemodialysis care with co-morbidities follow three different main paths at the end of life: uncertain anticipation of death; awaiting death after dialysis withdrawal; and sudden but not unexpected death. The ends of their lives are marked by complex symptoms and existential issues related to haemodialysis treatment and withdrawal, and their uncertainty of what to expect at the end of life suggests the need for increased continuity and coordination of whole person care. Both patients and their close relatives are often alone with their existential thoughts. In their complex lifeworlds, intertwined meanings of living with illness and maintenance of life with haemodialysis treatment near the end of life show that patients live in a borderland of living-dying that is shared by the close relative. Patients and close relatives focus on living when death is close but uncertain, with severe illness and the maintenance of life through advanced technology. Integrating the philosophy of palliative care (with a focus on symptom relief, team work, communication, relationships, and support of family members) into dialysis care, may support health care professionals in haemodialysis units and other re nal contexts, to improve the care of severely ill patients, both earlier in their illness and as they approach the end of their lives.
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| 5. |
- Axelsson, Lena, et al.
(författare)
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Meanings of being a close relative of a family member treated with haemodialysis
- 2015
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 24:3/4, s. 447-456
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 6. |
- Axelsson, Lena, et al.
(författare)
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Thoughts on death and dying when living with haemodialysis approaching end of life
- 2012
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 21:15-16, s. 2149-59
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Beck, Ingela, et al.
(författare)
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Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden
- 2016
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Ingår i: Palliative Medicine.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Patient-reported outcome measurements are important for measuring changes in patients’ health over time, evaluating the quality of care given, and improving the quality of care service. The Integrated Palliative care Outcome Scale (IPOS) is one such measure, capturing clinically important physical, psychological, social, and existential aspects of patients’ palliative care needs. When patients are unable to complete the IPOS questionnaire themselves with or without assistance, a staff version is also available.Aim: To translate and culturally adapt the IPOS Patient and Staff versions for use in the Swedish context.Method: The process comprised forward and backward translations, cultural adaptation, and expert group reviews. To validate the resulting Swedish version of IPOS, cognitive interviews were conducted with 13 patients and 15 staff from various care contexts.Preliminary results: The Swedish expert group changed some words and grammar due to minor discrepancies in the back translation process. The participants in the cognitive interviews responded positively overall to the questionnaire. Deteriorating health and not having Swedish as the native language did not cause problems in completing the questionnaire. After the first round of cognitive interviews, problematic questions and answer options were rephrased, and redundant text was deleted.Conclusion: The Swedish IPOS (Patient and Staff versions) has been validated linguistically and culturally, and is now available for clinical use. The next final step in the validation process will be to test the psychometric performance of the Swedish questionnaires.
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| 8. |
- Beck, Ingela, et al.
(författare)
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Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden
- 2016
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Patient-reported outcome measurements are important for measuring changes in patients’ health over time, evaluating the quality of care given, and improving the quality of care service. The Integrated Palliative care Outcome Scale (IPOS) is one such measure, capturing clinically important physical, psychological, social, and existential aspects of patients’ palliative care needs. When patients are unable to complete the IPOS questionnaire themselves with or without assistance, a staff version is also available. Aim: To translate and culturally adapt the IPOS Patient and Staff versions for use in the Swedish context. Method: The process comprised forward and backward translations, cultural adaptation, and expert group reviews. To validate the resulting Swedish version of IPOS, cognitive interviews were conducted with 13 patients and 15 staff from various care contexts. Preliminary results: The Swedish expert group changed some words and grammar due to minor discrepancies in the back translation process. The participants in the cognitive interviews responded positively overall to the questionnaire. Deteriorating health and not having Swedish as the native language did not cause problems in completing the questionnaire. After the first round of cognitive interviews, problematic questions and answer options were rephrased, and redundant text was deleted. Conclusion: The Swedish IPOS (Patient and Staff versions) has been validated linguistically and culturally, and is now available for clinical use. The next final step in the validation process will be to test the psychometric performance of the Swedish questionnaires.
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| 9. |
- Beck, Ingela, et al.
(författare)
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Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff
- 2017
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Ingår i: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 10. |
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| 11. |
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| 12. |
- Browall, Maria, et al.
(författare)
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Development and Psychometric Evaluation of a New Short Version of the Swedish Frommelt Attitudes Toward Care of the Dying Scale
- 2021
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Ingår i: Cancer Nursing. - : Ovid Technologies (Wolters Kluwer Health). - 0162-220X .- 1538-9804. ; 44:4, s. 305-313
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 13. |
- Craftman, Åsa, et al.
(författare)
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Home care assistants' attitudes and perceptions of caring for people at the end of life in their homes in Sweden
- 2022
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Ingår i: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 30:5
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
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| 15. |
- Eriksson, Linda Victoria, et al.
(författare)
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Symptom burden and recovery in the first year after allogeneic hematopoietic stem cell transplantation
- 2023
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Ingår i: Cancer Nursing. - 0162-220X .- 1538-9804. ; 46:1, s. 77-85
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 16. |
- Fristedt, Sofi, 1969-, et al.
(författare)
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Registered nurses and undergraduate nursing students' attitudes to performing end-of-life care
- 2021
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Ingår i: Nurse Education Today. - : Elsevier BV. - 0260-6917 .- 1532-2793. ; 98
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Tidskriftsartikel (refereegranskat)abstract
- 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. © 2021 Elsevier Ltd
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| 17. |
- Gransjön Craftman, Åsa, et al.
(författare)
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Caring for older people with dementia reliving past trauma
- 2020
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Ingår i: Nursing Ethics. - : Sage Publications. - 0969-7330 .- 1477-0989. ; 27:2, s. 621-633
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 18. |
- Hagelin, Carina Lundh, et al.
(författare)
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Nurses' experiences of clinical use of a quality of life instrument in palliative care
- 2007
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Ingår i: Contemporary Nurse. - : Informa UK Limited. - 1037-6178 .- 1839-3535. ; 27:1, s. 29-38
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 19. |
- Hagelin, Carina Lundh, et al.
(författare)
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The psychometric properties of the Swedish multidimensional fatigue inventory MFI-20 in four different populations
- 2007
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Ingår i: Acta Oncologica. - : Informa UK Limited. - 0284-186X .- 1651-226X. ; 46:1, s. 97-104
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Tidskriftsartikel (refereegranskat)abstract
- 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 <= 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.
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| 20. |
- Henoch, Ingela, 1956, et al.
(författare)
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Palliative Care Research : A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012
- 2016
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 30:1, s. 5-25
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Forskningsöversikt (refereegranskat)abstract
- 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.
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| 21. |
- Henoch, Ingela, 1956, et al.
(författare)
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Undergraduate nursing students' attitudes and preparedness toward caring for dying persons – A longitudinal study
- 2017
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Ingår i: Nurse Education in Practice. - : Elsevier BV. - 1471-5953 .- 1873-5223. ; 26, s. 12-20
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Tidskriftsartikel (refereegranskat)abstract
- 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. © 2017 Elsevier Ltd
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| 22. |
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| 23. |
- Holmberg, Katarina, et al.
(författare)
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Dismantle and rebuild : The importance of preparedness and self-efficacy before, during and after allogeneic haematopoietic cell transplantation
- 2024
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Ingår i: Journal of cancer survivorship. - 1932-2259 .- 1932-2267.
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim of this study was to explore patients' experiences of being prepared for allogenic haematopoietic cell transplantation and to explore their perceived self-efficacy and preparedness for self-care after allogenic haematopoietic cell transplantation.METHODS: Nine participants, who recently underwent allo-HCT, were interviewed regarding their views on preparedness, self-efficacy and self-care. The interviews were analysed using inductive qualitative content analysis.RESULTS: An overarching theme, Life is taken apart, then you have to know how to put the pieces together, and four sub-themes: Convert information into something understandable; Taking responsibility, maintaining and preparing for an uncertain time in life; Balancing vigilance with independence; and Reorientating in an altered body places new demands on self-care illustrate the dismantlement of life during treatment and how actions and approaches can build a new life.CONCLUSIONS: Both participants and healthcare professionals prioritised preparing for allo-HCT in the period before admission. However, during admission, preparation decreased and the time was not used for preparatory learning. This meant that participants were well prepared for the acute phase but unprepared for life after completion of treatment. Among the participants, self-efficacy was good. They sought information about taking care of their health before and in the aftermath of allo-HCT.IMPLICATIONS FOR CANCER SURVIVORS: This study provides insight into, and knowledge about, how patients prepare before, during and after treatment. This knowledge should primarily be directed towards healthcare professionals to be used for future patients who may need advice and support, as well as continued preparation for a life after transplantation.
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| 24. |
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| 25. |
- Holmberg, Katarina, et al.
(författare)
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Nursing as a balancing act in allogeneic hematopoietic cell transplantation : Nurses' experiences through participation in workshops
- 2023
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 63
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Tidskriftsartikel (refereegranskat)abstract
- PurposeRegistered 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.MethodAn 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.ResultAn 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.ConclusionThis 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.
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| 26. |
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| 27. |
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| 28. |
- Jervaeus, Anna, et al.
(författare)
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Does the Time Trade-off Method Reflect Health-Related Quality of Life? : A Mixed Methods Analysis of Preference Measures 10 Years After Aneurysmal Subarachnoid Hemorrhage
- 2019
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Ingår i: World Neurosurgery. - : Elsevier BV. - 1878-8750 .- 1878-8769. ; 126, s. 11-20
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 29. |
- Klarare, Anna, et al.
(författare)
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Actions helping expressed or anticipated needs : Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams
- 2018
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 27:6
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 30. |
- Klarare, Anna, et al.
(författare)
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Experiences of security and continuity of care : patients' and families' narratives about the work of specialized palliative home care teams
- 2017
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Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 15:2, s. 181-189
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 31. |
- Klarare, Anna, et al.
(författare)
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Leadership in specialist palliative home care teams : A qualitative study
- 2020
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Ingår i: Journal of Nursing Management. - : Hindawi Limited. - 0966-0429 .- 1365-2834. ; 28:1, s. 102-111
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Tidskriftsartikel (refereegranskat)abstract
- AimThe aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams.BackgroundFor 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.MethodsQualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis.ResultsTeam 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.ConclusionTeam 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 ManagementTeam 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.
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| 32. |
- Klarare, Anna
(författare)
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Specialized palliative home care teams : Complementary perspectives of team functions and influences on patients and families
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Persons with life-threatening illness are increasingly being cared for and dying at home. Palliative care strives to cater to multiple dimensions such as physical, psychosocial and spiritual or existential, and meeting these needs in patients and families requires multiple competencies. Palliative care organizations propose organization and delivery of care in teamwork models; however, teamwork is complex and can be approached from various perspectives. Previous research has identified gaps in palliative care regarding which components of teamwork are most effective. The overall aim of this thesis was to explore perspectives of team function in specialized palliative care teams, among health care professionals, families and patients. Study I entailed translation and cultural adaptation of a research questionnaire. Study II entailed qualitative interviews with health care professionals (n=15) working in specialized palliative home care and Study III interviews with patients (n=6) and family members (n=7). In Study IV, an exploratory design was used. Initially team leaders (n=77) in palliative care reported team function. Next, health care professionals (n=61) reported team development in the group development questionnaire, patients (n=43) reported symptoms in the Edmonton Symptom Assessment System and family members (n=45) reported satisfaction with care in the translated and culturally adapted FAMCARE-2 questionnaire. Results of the studies are: (I) a translated culturally adapted and initially tested Swedish language version of the FAMCARE-2 scale, (II) health care professionals report that competence, communication and organization are crucial components of teamwork in specialized palliative homecare, (III) patients and families report that they experience security and continuity of care due to 24/7 care, sensitivity to changing needs and demonstrating caring, and (IV) specialized palliative home care teams have a core of registered nurses, physicians and social workers. Positive associations were found between team maturity and team effectiveness.
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| 33. |
- Klarare, Anna, et al.
(författare)
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Team Interactions in Specialized Palliative Care Teams: A Qualitative Study
- 2013
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 16:9, s. 1062-1069
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 34. |
- Klarare, Anna, et al.
(författare)
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Team type, team maturity and team effectiveness in specialized palliative home care : an exploratory questionnaire study
- 2019
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Ingår i: Journal of Interprofessional Care. - : Informa UK Limited. - 1356-1820 .- 1469-9567. ; 33:5, s. 504-511
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 35. |
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| 36. |
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| 37. |
- Klarare Ljungberg, Anna, et al.
(författare)
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Translation and cultural adaptation of research instruments - guidelines and challenges : an example in FAMCARE-2 for use in Sweden
- 2015
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Ingår i: Informatics for health & social care. - : Informa UK Limited. - 1753-8165 .- 1753-8157. ; 40:1, s. 67-78
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 38. |
- Klasson, Caritha, et al.
(författare)
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Fatigue in Cancer Patients in Palliative Care : A Review on Pharmacological Interventions.
- 2021
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Ingår i: Cancers. - : MDPI AG. - 2072-6694. ; 13:5
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Forskningsöversikt (refereegranskat)abstract
- 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.
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| 39. |
- Krook, Caroline, 1972-, et al.
(författare)
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Living in limbo : Meanings of living with fecal incontinence as narrated by women after treatment for pelvic cancer
- 2021
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 55
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 40. |
- Lindqvist, Olav, et al.
(författare)
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Complexity in Non-Pharmacological Caregiving Activities at the End of Life : An International Qualitative Study
- 2012
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Ingår i: PLoS Medicine. - San Francisco : Public Library of Science. - 1549-1277 .- 1549-1676. ; 9:2, s. e1001173-
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 41. |
- Lindqvist, Olav, et al.
(författare)
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Four essential drugs needed for quality care of the dying : a Delphi-study based international expert consensus opinion
- 2013
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 16:1, s. 38-43
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Tidskriftsartikel (refereegranskat)abstract
- Abstract 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.
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| 42. |
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| 43. |
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| 44. |
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| 45. |
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| 46. |
- Lundh Hagelin, Carina, et al.
(författare)
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Factors influencing attitude toward care of dying patients in first-year nursing students.
- 2016
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Ingår i: International journal of palliative nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 22:1, s. 28-36
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 47. |
- Lundh Hagelin, Carina, et al.
(författare)
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Fatigue dimensions in patients with advanced cancer in relation to time of survival and quality of life
- 2009
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:2, s. 171-178
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Tidskriftsartikel (refereegranskat)abstract
- 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. Palliative Medicine (2009); 23: 171-178
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| 48. |
- Lundh Hagelin, Carina
(författare)
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Fatigue in patients with advanced cancer : aspects of assessment and measurements
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Symptoms are very common in patients with advanced cancer, with weakness, fatigue, anorexia, pain, and depression reported as the most common and distressing ones. A core issue in palliative care is to provide relief of symptoms, and to be able to do this satisfactory there is still much to be known about symptom aetiology, prevalence, character and measurement. In this thesis, focus is on fatigue in patients with advanced cancer. Although fatigue is recognised to affect patients during the whole cancer trajectory, few studies have included and compared individuals at different stages of cancer from early treatment to the end of life. The primary aim was to advance knowledge of fatigue in patients with advanced cancer, by exploring to what extent and in what ways these patients experience fatigue, and to investigate aspects of assessment and measurement of fatigue. Both quantitative and qualitative methods have been used. Patients with advanced cancer (paper I-IV), patients receiving curative radiotherapy (Paper II, III), patients visiting a medical outpatient clinic (Paper II), healthy individuals (health care staff, Paper II) and registered nurses at a specialized palliative care facility (Paper V), participated in the different studies. In all studies the participants responded to different self-reporting questionnaires, the quantitative data were analysed with descriptive and parametric statistical methods, the qualitative data was explorative using an interpretive descriptive analysis. The results indicate that patient with advanced cancer experienced fatigue more intensively than did patients earlier in the cancer trajectory, receiving curative cancer therapy. Our results confirm the multidimensionality of fatigue in patients with cancer. At different stages fatigue was most often experienced as a bodily sensation: as an overall feeling of tiredness, tiring easily, not feeling fit or rested, and lack of energy. Mental aspects of fatigue including ability to concentrate, making plans and do things had less of an impact. Being married or cohabiting was found to be related to higher levels of reported fatigue, which contradicts earlier findings. Forty-four percent of the patients with advanced cancer could be classified as depressed, as compared to about 17% of the patients receiving radiotherapy. There is a common agreement that fatigue negatively influences quality of life. It was shown that the relationship between fatigue and emotional functioning, and with quality of life, varies during the palliative care trajectory, and that the relation decreases in the last month of life. This may reflect that other symptoms and aspects of life become more important when patients are getting closer to death. These correlations were strongest for the group of patients who lived between 61 to 120 days. These findings may be interpreted that the fatigue experience may change at the end of life. We have shown clinical difficulties in making an assessment of quality of life and fatigue with a standardised measurement. This reflects the difficulties to perform these procedures both clinically and for research purposes in palliative care. However, this thesis also demonstrates that fatigue specific instruments are helpful in assessment of fatigue and that patients were able to answer different instruments even very close to death. Future research about fatigue is needed in this group of frail patients comprising physical, psychological, social and existential aspects of fatigue, as well as changes and meaning of fatigue over time.
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| 49. |
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| 50. |
- Lundh Hagelin, Carina, et al.
(författare)
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Patterns of fatigue related to advanced disease and radiotherapy in patients with cancer : a comparative cross-sectional study of fatigue intensity and characteristics
- 2009
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Ingår i: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 17:5, s. 519-526
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Tidskriftsartikel (refereegranskat)abstract
- 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. 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. 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. 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.
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