| 1. |
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| 2. |
- Melin Johansson, Titti, et al.
(författare)
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The meaning of quality of life: narrations by patients with incurable cancer in palliative home care
- 2008
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 6:3, s. 231-238
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden. METHODS: To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004-2006. Qualitative content analysis was used to interpret the meaning regarding quality of life. RESULTS: Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients' psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team. SIGNIFICANCE OF RESULTS: This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients' quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients' entire life situation and increases quality of life.
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| 3. |
- Udo, Camilla, et al.
(författare)
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Existential Reflections among Nurses in Surgical Care
- 2010
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Ingår i: Journal of Palliative Care. - Montréal, Canada. - 0825-8597. ; 26:3, s. 228-229
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To gain a deeper understanding of surgical nurses’ experiences of existential issues in cancer care.Methods: Written critical incidents were used to collect nurses’ descriptions and reflections of critical care situations involving existential issues. Individual face-to-face interviews were conducted as follow-up using semi-structured questions which were analysed with hermeneutical analysis. Preliminary results: The analysis showed that nurses in surgical care experience caring from different positions. Nurses either focus on the patient as a whole in the caring process or nurses focus more on medical information in the caring process. When focusing on the patient as a whole existential issues are considered to be a natural part of the caring process and nurses’ personal experiences help to enable encounters with the patients. When focusing more on the medical information in the caring process there was a transfer of responsibility to others, mainly the physicians. Preliminary conclusions: This study highlights that existential issues are indeed part of surgical cancer care derived from existential care situations. Nurses’ focus in the caring process differs. Nurses express different positions in caring and not all acknowledge patients’ existential issues as part of nurses’ responsibility. When lacking common strategies in the organization nurses derive existential caring strategies from personal experiences.
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| 4. |
- Henoch, Ingela, 1956, et al.
(författare)
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The Swedish Version of the Frommelt Attitude Toward Care of the Dying Scale : Aspects of Validity and Factors Influencing Nurses' and Nursing Students' Attitudes.
- 2014
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 37:1, s. E1-E11
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language. OBJECTIVES:: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients. METHODS:: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used. RESULTS:: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients. CONCLUSIONS:: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients. IMPLICATION FOR PRACTICE:: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.
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| 5. |
- Henoch, Ingela, et al.
(författare)
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The Swedish version of the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) : Aspects of validity and factors influencing nurses' and nursing students' attitudes
- 2014
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 37:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language.Objectives: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients.Methods: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used.Results: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach [alpha]'s. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients.Conclusions: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients.Implication for Practice: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.
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| 6. |
- Melin-Johansson, Christina, et al.
(författare)
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Significant improvement in quality of life of patients with incurable cancer after designation to a palliative homecare team
- 2010
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 19:2, s. 243-250
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- The aims of this study were to describe and compare quality of life (QOL) before and after designation to a palliative homecare team (PHT) in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global QOL. We measured patients� QOL one week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (AQEL). Of 163 eligible patient 63 participated without attrition. Patients� QOL improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (p=.009), nausea (p=.008), anxiety (p=.007), getting hold of staff (p=.000), received care (p=.003) and global QOL (p=.023). Depression/low in mood (r=.55) and meaningfulness (r=.70) associated to global QOL. Furthermore, pain (p=.028) and meaningfulness (p=.028) predicted global QOL. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global QOL.
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| 7. |
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| 8. |
- Berg, Linda, 1961, et al.
(författare)
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Characterisation of Cancer Support and Rehabilitation Programmes: A Swedish Multiple Case Study
- 2014
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Ingår i: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 8, s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.
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| 9. |
- 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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| 10. |
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| 11. |
- Browall, Maria, et al.
(författare)
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Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care
- 2014
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:6, s. 636-644
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Tidskriftsartikel (refereegranskat)abstract
- Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress. Aim: The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer. Methods and sample: Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured. Results: Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live. Conclusions: This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.
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| 12. |
- Browall, Maria, 1963, et al.
(författare)
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Health care staff's opinions about existential issues among patients with cancer.
- 2010
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Ingår i: Palliative & supportive care. - : Cambridge University Press. - 1478-9523 .- 1478-9515. ; 8:1, s. 59-68
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients. METHOD: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were tape-recorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories. RESULTS: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation. SIGNIFICANCE OF RESULTS: The strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.
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| 13. |
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| 14. |
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| 15. |
- Danielson, Ella, 1942, et al.
(författare)
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Adherence to treatment in patients with chronic diseases: From alertness to persistence
- 2019
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Ingår i: International Journal of Community Based Nursing and Midwifery. - 2322-2476. ; 7:4, s. 248-257
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Tidskriftsartikel (refereegranskat)abstract
- Background: Adherence to treatment is a process that begins with alertness about the disease and has to end with staying in treatment. It is a concern to all health care disciplines. The aim of this study was to explore the experience of adherence to treatment patients with chronic diseases. Methods: This qualitative study was conducted during a period of 6 months in Golestan province in Iran in 2017. In-depth semi-structured interviews were done with a purposive sample of 15 patients with chronic disease (i.e. Chronic renal failure (CRF), Hypertension (HTN), Multiple sclerosis (MS) and Diabetes). Data were analyzed using qualitative content analysis in MAXQDA Software. Results: The analysis of the data in this study led to the development of ten subthemes and four themes emerged as follows: motivation, cohesion, commitment and empowerment which are necessary components for adherence to treatment in patients. “Moving from alertness to persistence” emerged as the main theme. Conclusion: The findings of the study offer helpful insights into the concept of adherence to treatment and its components for health care providers, which can be used to develop the best possible care plan and may help health care providers to support the patients to have an active role for following treatment rather than just doing it. © 2019, Shriaz University of Medical Sciences. All rights reserved.
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| 16. |
- Eriksson, Gerd, et al.
(författare)
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The need for palliative care education, support and reflection among rural nurses and other staff – A quantitative study
- 2015
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:2, s. 265-274
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Many people now die in community care, and, considering the aging population, all healthcare staff members must be prepared to provide palliative care. Our objectives were to describe the total staff working in different care organizations in a rural community in Sweden and to explore palliative care competence, to describe educational gaps and the need for support and reflection, and to determine whether there are differences in care organizations, professions, age, and gender.Method: A 4-section 20-item questionnaire was distributed to 1686 staff (65% response rate): in nursing homes (n = 395), home care (n = 240), and group residential settings (n = 365). Registered nurses (n = 70), assistant nurses (n = 916), managers (n = 43), and paramedics (n = 33) participated. Descriptive and correlational statistics were employed.Results: Significant differences were found, and 40% (53% among men) lacked palliative care education, Fewer than 50% lacked education in the spiritual/existential areas, and 75% of those aged 20–66 (75% women, 55% men) needed further education. More women than men and staff aged 50–59 had an increased need to reflect.Significance of Results: Our study may provide guidance for managers in rural communities when planning educational interventions in palliative care for healthcare staff and may support direct education with content for specific professions.
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| 17. |
- Franks, P. W., et al.
(författare)
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Technological readiness and implementation of genomic-driven precision medicine for complex diseases
- 2021
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Ingår i: Journal of Internal Medicine. - : Wiley. - 0954-6820 .- 1365-2796. ; 290:3, s. 602-620
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Forskningsöversikt (refereegranskat)abstract
- The fields of human genetics and genomics have generated considerable knowledge about the mechanistic basis of many diseases. Genomic approaches to diagnosis, prognostication, prevention and treatment - genomic-driven precision medicine (GDPM) - may help optimize medical practice. Here, we provide a comprehensive review of GDPM of complex diseases across major medical specialties. We focus on technological readiness: how rapidly a test can be implemented into health care. Although these areas of medicine are diverse, key similarities exist across almost all areas. Many medical areas have, within their standards of care, at least one GDPM test for a genetic variant of strong effect that aids the identification/diagnosis of a more homogeneous subset within a larger disease group or identifies a subset with different therapeutic requirements. However, for almost all complex diseases, the majority of patients do not carry established single-gene mutations with large effects. Thus, research is underway that seeks to determine the polygenic basis of many complex diseases. Nevertheless, most complex diseases are caused by the interplay of genetic, behavioural and environmental risk factors, which will likely necessitate models for prediction and diagnosis that incorporate genetic and non-genetic data.
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| 18. |
- 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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| 19. |
- Granrud, Marie Dahlen, et al.
(författare)
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Health Care Personnel's Perspectives on Quality of Palliative Care During the COVID-19 Pandemic - A Cross-Sectional
- 2023
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Ingår i: Journal of Multidisciplinary Healthcare. - : Dove Medical Press. - 1178-2390. ; 16, s. 2893-2903
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The provision of high-quality palliative care is challenging, especially during a pandemic like COVID-19. The latter entailed major consequences for health care systems and health care personnel (HCP) in both specialist and community health care services, in Norway and worldwide. The aim of this study was to explore how the HCP perceived the quality of palliative care in nursing homes, medical care units, and intensive care units during the COVID-19 pandemic. Methods: This study had a cross-sectional design. A total of 290 HCP from Norway participated in the study (RR = 25.8%) between October and December 2021. The questionnaire comprised items concerning respondents' demographics and quality of care, the latter measured by the short form of the Quality from the Patient's Perspective-Palliative Care instrument, adapted for HCP. The STROBE checklist was used. Results: This study shows that the HCP scored subjective importance as higher in all dimensions, items and single items than their perception of the actual care received. This could indicate a need for improvement in all areas. Information about medication, opportunity to participate in decisions about medical and nursing care and continuity regarding receiving help from the same physician and nurse are examples of areas for improvement. Conclusion: Study results indicate that HCP from nursing homes, medical care units, and intensive care units perceived that quality of palliative care provided was not in line with what they perceived to be important for the patient. This indicate that it was challenging to provide high-quality palliative care during the COVID-19 pandemic.
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| 20. |
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| 21. |
- Granrud, MD, et al.
(författare)
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Health Care Personnel's Perspectives on Quality of Palliative Care During the COVID-19 Pandemic : A Cross-Sectional Study
- 2023
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Ingår i: Journal of Multidisciplinary Healthcare. - : Dove Medical Press. - 1178-2390. ; 16, s. 2893-2903
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The provision of high-quality palliative care is challenging, especially during a pandemic like COVID-19. The latter entailed major consequences for health care systems and health care personnel (HCP) in both specialist and community health care services, in Norway and worldwide. The aim of this study was to explore how the HCP perceived the quality of palliative care in nursing homes, medical care units, and intensive care units during the COVID-19 pandemic. Methods: This study had a cross-sectional design. A total of 290 HCP from Norway participated in the study (RR = 25.8%) between October and December 2021. The questionnaire comprised items concerning respondents' demographics and quality of care, the latter measured by the short form of the Quality from the Patient's Perspective-Palliative Care instrument, adapted for HCP. The STROBE checklist was used. Results: This study shows that the HCP scored subjective importance as higher in all dimensions, items and single items than their perception of the actual care received. This could indicate a need for improvement in all areas. Information about medication, opportunity to participate in decisions about medical and nursing care and continuity regarding receiving help from the same physician and nurse are examples of areas for improvement. Conclusion: Study results indicate that HCP from nursing homes, medical care units, and intensive care units perceived that quality of palliative care provided was not in line with what they perceived to be important for the patient. This indicate that it was challenging to provide high-quality palliative care during the COVID-19 pandemic.
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| 22. |
- Haas, B. K., et al.
(författare)
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Case Study of Persons with Cancer Participating in a Community-Based Exercise Program: An Exploration of Meaning and Change
- 2016
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Ingår i: Qualitative Report. - 2160-3715 .- 1052-0147. ; 21:8, s. 1409-1424
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Tidskriftsartikel (refereegranskat)abstract
- Increasingly, research supports the importance of incorporating exercise into the cancer care paradigm. While quantitative studies have substantiated the significant effects of exercise on physical functioning, the individual's perspective of participating in an exercise program has rarely been considered. The purpose of this study was to explain the impact of a community based exercise program on the lives of persons with cancer and their caregivers. Based on Bandura's Social Cognitive Theory, a single explanatory case study with multiple embedded units of analyses was conducted. Interviews were conducted with 10 individuals representing participants with cancer, their caregivers, and health care providers. Data were analyzed using Yin's case study method. Four themes emerged ( Sense of Community, Building Relationships, Bridging the Gap, and Living Life Abundantly), which identified the unique characteristics of this community based exercise program. Incorporation of these characteristics into program planning may benefit other communities that aspire to offer a similar program to improve patient outcomes and enhance quality of life.
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| 23. |
- Henoch, Ingela, 1956, et al.
(författare)
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Development of a training intervention of existential support to patients with cancer.
- 2014
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Ingår i: Sigma Theta Tau International Honor Society’s 2nd European Regional Conference i Göteborg, Sverige, 2014-06-16 – 06-18..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Existential issues in patients with cancer need to be highlighted, but a literature review revealed lack of intervention studies suitable for support in existential crisis in daily healthcare. Aim: To develop and evaluate an intervention targeting existential issues in patients with cancer. Method: First, patients’ important existential issues were defined through a literature review and found to be supporting and detrimental existential issues. Secondly, focus group interviews with healthcare staff working with patients with cancer identified their patients’ existential issues as life and death, meaning, freedom, and relationships and solitude. The healthcare staff furthermore recognized their responsibility to achieve an encounter with the patients, but seemed to need more training in delivering existential support. Thereafter, the intervention was designed as training with individual and group reflections to healthcare staff concerning meaning, death, freedom, and loneliness with five sessions held biweekly. Prior to the training, the staff wrote critical incidents in which existential issues were brought up. The main outcome was determined to be the staff’s confidence in communication. Another potential outcome was the staff’s attitude to care for dying patients. The design was pilot-tested in a surgical clinic. Results: The main intervention study was conducted as a randomized controlled trial with 102 registered nurses and enrolled nurses from hospice, oncology clinic and palliative homecare team. The confidence in communication increased significantly in the training group from baseline to both first and the second follow-ups, whereas attitudes to care for dying patients did not change. Conclusion: Although positive outcome, the project needs to be further tested, to establish the stability of the intervention, broadening the subject groups, and exploring possible extension of the training. In the next step patients’ and staff’ perceptions of given support will be explored.
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| 24. |
- Henoch, Ingela, 1956, et al.
(författare)
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Development of an existential support training program for healthcare professionals
- 2015
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:6, s. 1701-1709
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Our aim was to describe the developmental process of a training program for nurses to communicate existential issues with severely ill patients.METHOD: The Medical Research Council (MRC) framework for the development and evaluation of complex interventions was used to develop a training program for nurses to communicate about existential issues with their patients. The steps in the framework were employed to describe the development of the training intervention, and the development, feasibility and piloting, evaluation, and implementation phases. The development and feasibility phases are described in the Methods section. The evaluation and implementation phases are described in the Results section.RESULTS: In the evaluation phase, the effectiveness of the intervention was shown as nurses' confidence in communication increased after training. The understanding of the change process was considered to be that the nurses could describe their way of communicating in terms of prerequisites, process, and content. Some efforts have been made to implement the training intervention, but these require further elaboration.SIGNIFICANCE OF RESULTS: Existential and spiritual issues are very important to severely ill patients, and healthcare professionals need to be attentive to such questions. It is important that professionals be properly prepared when patients need this communication. An evidence-based training intervention could provide such preparation. Healthcare staff were able to identify situations where existential issues were apparent, and they reported that their confidence in communication about existential issues increased after attending a short-term training program that included reflection. In order to design a program that should be permanently implemented, more knowledge is needed of patients' perceptions of the quality of the healthcare staff's existential support.
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| 25. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing Students’ Attitudes toward Caring for Dying Persons - Development during Nurse Education.
- 2016
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Ingår i: Palliative Medicine : A Multiprofessional Journal. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background and aim: Most nurses will care for dying patients in their work and nursing education need to prepare students for this task. The attitudes toward dying and death, and communication with patients and families are important issues in palliative care education. The aim was to describe nursing students’ attitudes toward caring for dying patients during undergraduate education, factors influencing changes in attitudes, and how prepared students feel to perform end of life care. Design and methods: This is a longitudinal study exploring the development of nursing students’ attitudes to care for dying patients with the questionnaire Frommelt Attitude Toward Care of the Dying Scale (FATCOD) first, at the beginning of their education (T1), second, at the beginning of the second year (T2) and finally, at the end of the third year of education (T3). FATCOD is a 30 item questionnaire exploring attitudes to care for dying patients; items are rated on a five-point Likert scale. Total FATCOD score, all items summated ranging from 30 to 150, for T1, T2 and T3 was analyzed with ANOVA. Length of theoretical and presence of practical palliative care education were hypothesized to influence changes in attitudes. Students also evaluated support and preparation from education. At all three occasions, 117 nursing students from six universities in Sweden participated. Results and interpretation: The total FATCOD increased from 126 to 132 from T1 to T3. Theoretical palliative care education became significant predictor of changes in attitudes towards caring for dying patients in that five weeks education better predicted changes in attitudes than three weeks. Students with five weeks theoretical palliative care education also felt more prepared and supported by the education to take care of a dying patients. Students did not feel prepared to take care of a dead body or meet families. Although nursing students’ attitudes increased, they need more preparation in palliative care.
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| 26. |
- Henoch, Ingela, 1956, et al.
(författare)
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Patients’, family members’ and healthcare staffs’ opinions about existential issues as a base for an educational intervention
- 2011
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Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-4368 .- 2045-435X. ; 1:1
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Tidskriftsartikel (refereegranskat)abstract
- Objective To explore patients', family members' and healthcare staff's opinions about existential issues important to patients with cancer and their relatives. Methods Two integrative literature reviews were conducted about existential issues among cancer patients and relatives, and interventions to meet these issues. Four focus groups were conducted with healthcare staff working with cancer patients at different stages about patients' existential issues, and staff's responsibility when existential issues are raised. Results In the patient review, existential issues were divided into two themes: struggle to maintain self-identity and threats to self-identity. Relatives' existential issues concerned living both in and beyond the presence of death, with reminders of death, compelling them to respond to life close to death and seek support. Few interventions directed to patients or relatives applicable to everyday healthcare practice were found. Focus groups with staff revealed four categories of patients' existential issues, life and death, meaning, freedom of choice, relationships and solitude. According to staff, their responsibility concerned achieving an encounter with the patient. Conclusion Results from three studies are congruent in that, patients, relatives and staff agree, although in different ways, about the importance of existential issues to patients and relatives. Healthcare staff was aware of the importance of existential issues and are to some extent confident about how to act when these issues are raised by the patients. Ongoing studies The project group now continues implementing findings from these studies in an educational intervention to healthcare staff in different settings, and planning interventions to patients and relatives.
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| 27. |
- Henoch, Ingela, 1956, et al.
(författare)
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Training Intervention for Health Care Staff in the Provision of Existential Support to Patients With Cancer : A Randomized, Controlled Study
- 2013
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 46:6, s. 785-794
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Tidskriftsartikel (refereegranskat)abstract
- Context: When a patient receives a cancer diagnosis, existential issues become more compelling. Throughout the illness trajectory, patients with cancer are cared for in oncology wards, by home care teams or in hospices. Nurses working with these patients are sometimes aware of the patients' existential needs but do not feel confident when discussing these issues.Objectives: To determine the effects of a training intervention, where the focus is on existential issues and nurses' perceived confidence in communication and their attitude toward caring for dying patients.Methods: This was a randomized, controlled trial with a training intervention comprising theoretical training in existential issues combined with individual and group reflection. In total, 102 nurses in oncology and hospice wards and in palliative home care teams were randomized to a training or non-training group. Primary outcomes, confidence in communication, and attitude toward the care of dying patients were measured at baseline, immediately after the training, and five to six months later.Results: Confidence in communication improved significantly in the training group from baseline (before the training) to both the first and second follow-up, that is, immediately after the training and five months later. The attitude toward caring for the dying did not improve in the training group.Conclusion: This study shows that short-term training with reflection improves the confidence of health care staff when communicating, which is important for health care managers with limited resources. Further studies are needed to explore how patients experience the communication skills of health care staff after such training.
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| 28. |
- 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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| 29. |
- Høgsnes, Linda, et al.
(författare)
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"Being in Between" Nurses' Experiences When Caring for Individuals With Dementia and Encountering Family Caregivers' Existential Life Situations
- 2019
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Ingår i: Research in Gerontological Nursing. - : SLACK, Inc.. - 1940-4921 .- 1938-2464. ; 12:2, s. 91-98
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Tidskriftsartikel (refereegranskat)abstract
- The focus of the current study was to explore nursing home staff's understanding and how they approach family caregivers' existential life situations when caring for individuals with dementia. A qualitative interview study was conducted with 20 nursing staff in two nursing homes in northern Sweden. Face-to-face interviews were analyzed using interpretive content analysis. One overarching theme with three themes and nine subthemes comprised the findings. The themes describe how nursing staff were "in between" when they cared for individuals with dementia and encountered family caregivers' existential life situations. Nurses acted as advocates and safeguarded family caregivers via dialogues and interactions. Nurses were supporters and by"being in between"they eased family caregivers'feelings of powerlessness in relation to dying and death."Being in between" may give nurses a deeper understanding of family caregivers'existential needs, thus increasing family caregivers' well-being.
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| 30. |
- Høgsnes, Linda, et al.
(författare)
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Healthcare professionals' documentation in nursing homes when caring for patients with dementia in end of life - a retrospective records review
- 2016
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 25:11-12, s. 1663-1673
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectivesTo investigate how end-of-life care was described by healthcare professionals in records of deceased persons affected by dementia who had lived in Swedish nursing homes. BackgroundIn the final stage of dementia disease, the persons are often cared for at nursing homes and they often die there. The research concurs that a palliative approach to end-of-life care is essential but there are still some limitations regarding research about what constitutes the end-of-life care provided to persons affected by dementia in Sweden. MethodNursing records (n=50) and medical records (n=50) were retrospectively reviewed in two nursing homes. The analysis was conducted using deductive and inductive content analysis. Three phases of The Liverpool Care Pathway; Initial assessment, Continuous assessment and Follow-up, were used deductively to first sort the text in the records, then the text in each phase was further analysed with inductive content analysis. Four categories and 11 subcategories described the content in the records. ResultsThe end-of-life care was described in the healthcare records based on such categories as decision-making, participation and communication, assessment and prevention of symptom and following up after the residents had died. ConclusionPaticularly, physical symptoms were documented and, to a lesser degree, psychological or existential/spiritual needs. Relevance to clinical practiceHealthcare professionals must have a holistic view of the person affected by dementia during the end-of-life care and, according to this study, more focus must be placed on their psychosocial and existential needs in the documentation of end-of-life care.
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| 31. |
- Høgsnes, Linda, et al.
(författare)
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The existential life situations of spouses of persons with dementia before and after relocating to a nursing home
- 2014
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Ingår i: Aging & Mental Health. - : Informa UK Limited. - 1360-7863 .- 1364-6915. ; 18:2, s. 152-160
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: The aim was to describe the existential life situations of spouses who care for persons with dementia, before and after relocation to nursing homes.Method: This was a qualitative study among 11 spouses of persons with dementia, recruited via purposeful sampling. Data were collected through interviews and analysed with interpretive content analysis.Results: Before the relocation to nursing homes, the spouses' existential life situations were characterized by feelings of shame and guilt, being isolated in the home. Spouses were also exposed to psychological threats, physical violence, and had feelings of placing one's own needs last. After the relocation, spouses described feelings of guilt and freedom, living with grief and thoughts of death, feelings of loneliness in the spousal relationship, and striving for acceptance despite a lack of completion.Conclusion: The existential life situation of spouses of persons with dementia is about being in limit situations which changes when the ill person relocates to a nursing home. This is important knowledge for health care staff to bear in mind at nursing homes when encountering spouses.
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| 32. |
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| 33. |
- Høgsnes, Linda, 1976-, et al.
(författare)
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The Shift in Existential Life situation of Adult Children to Parents with Dementia Relocated to Nursing Homes
- 2016
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Ingår i: Open Nursing Journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 10, s. 122-130
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Tidskriftsartikel (refereegranskat)abstract
- Background:Previous research describes spouses and adult children of people with dementia as a homogeneous group using one term: family caregivers. Recent research shows that the needs and experiences of spouses and adult children differ, therefore they cannot be studied as a homogeneous group.Aims:The aim of the study was to describe the shift in existential life situations of adult children of a parent with dementia relocated to nursing homes.Design:This is a qualitative study with an interpretive approach.Methods:Face-to-face interviews were held with 11 adult children aged 48-65 years. The interviews lasted 30–60 minutes and data were analysed using interpretive content analysis.Findings:The adult children described how they experienced their life situation before and after their parents’ relocation. Before relocation they described feelings of powerlessness, loneliness in their responsibilities, loss and guilt. After relocation they had feelings of freedom, ongoing responsibility, living with loss and having a new relationship with death.Conclusion:The most important finding in our study was that adult children developed a different relationship with death than before the parent became affected by dementia. It is essential that healthcare staff understand and address the adult children’s existential life situations and the suffering they are experiencing. Healthcare staff need to be conscious about adult children’s needs for support to address their existential life situations before and after their parents relocate to nursing homes.
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| 34. |
- Høgsnes, Linda, et al.
(författare)
-
The Shift in Existential Life Situations of Adult Children to Parents with Dementia Relocated to Nursing Homes. : The Shift in Existential Life Situation of Adult to Parents with Dementia
- 2016
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Ingår i: The open nursing journal. - : Bentham Science Publishers Ltd.. - 1874-4346. ; 10, s. 122-30
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Tidskriftsartikel (refereegranskat)abstract
- Previous research describes spouses and adult children of people with dementia as a homogeneous group using one term: family caregivers. Recent research shows that the needs and experiences of spouses and adult children differ, therefore they cannot be studied as a homogeneous group.The aim of the study was to describe the shift in existential life situations of adult children of a parent with dementia relocated to nursing homes.This is a qualitative study with an interpretive approach.Face-to-face interviews were held with 11 adult children aged 48-65 years. The interviews lasted 30-60 minutes and data were analysed using interpretive content analysis.The adult children described how they experienced their life situation before and after their parents' relocation. Before relocation they described feelings of powerlessness, loneliness in their responsibilities, loss and guilt. After relocation they had feelings of freedom, ongoing responsibility, living with loss and having a new relationship with death.The most important finding in our study was that adult children developed a different relationship with death than before the parent became affected by dementia. It is essential that healthcare staff understand and address the adult children's existential life situations and the suffering they are experiencing. Healthcare staff need to be conscious about adult children's needs for support to address their existential life situations before and after their parents relocate to nursing homes.
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| 35. |
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| 36. |
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| 37. |
- 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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| 38. |
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| 39. |
- Lundh Hagelin, Carina, et al.
(författare)
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Teaching about death and dying : A national mixed-methods survey of palliative care education provision in Swedish undergraduate nursing programmes
- 2022
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 36:2, s. 545-557
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 40. |
- Lundh Hagelin, Carina, et al.
(författare)
-
Undervisning om döende och död : En nationell kartläggning av palliativ vård i svenska sjuksköterskeprogram
- 2022
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 41. |
- Lövgren, Malin, et al.
(författare)
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Telling the truth to dying children — end-of-life communication with families
- 2019
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 108:11, s. 2111-2112
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Tidskriftsartikel (refereegranskat)abstract
- Communicating a terminal prognosis is challenging for patients, families and healthcare professionals. However, positive effects have been reported when children are told about their diagnosis and prognosis, including fewer symptoms of anxiety and depression and enhanced adherence to treatment (1). When research about prognostic communication was first published in the 1950s and 1960s, it recommended protecting children from bad news. By the late 1960s, a more open approach was recommended and by the late 1980s the advice was to always tell children. There has been a growing awareness of the complexity of prognostic disclosure and the need to balance often competing factors, such as hope and patient and family considerations, on a case-to-case basis (2).
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| 42. |
- Martinsson, Lisa, et al.
(författare)
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Patients' perspectives on information from physicians during palliative chemotherapy : A qualitative study
- 2016
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 14:5, s. 495-502
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE:During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning.METHOD:A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis.RESULTS:Three categories were defined during the analytical process: "having a chronic disease," "depending on chemotherapy," and "living with an unpredictable future."SIGNIFICANCE OF RESULTS:Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.
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| 43. |
- Martinsson, L., et al.
(författare)
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Patients' perspectives on information from physicians during palliative chemotherapy: A qualitative study
- 2016
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press (CUP). - 1478-9515 .- 1478-9523. ; 14:5, s. 495-502
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning. Method: A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis. Results: Three categories were defined during the analytical process: having a chronic disease," "depending on chemotherapy," and "living with an unpredictable future. Significance of results: Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.
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| 44. |
- Martinsson, Lisa, 1985-
(författare)
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Quality improvement in palliative care : the role of a national quality register and perceptions of information during palliative chemotherapy
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionThere is a need in palliative care for development of structured methods to assess quality and support improvement. This need is present both within and outside specialised palliative care.Honest information from physicians is regarded as an important part of palliative care. Information about the transition to end-of-life care (ITEOL), conveyed by physicians to patients, has also been described as a ‘breakpoint conversation’.Quality registers enable monitoring and improvement of quality of care, and clinical research. The Swedish Register of Palliative Care (SRPC) is a Swedish national quality register that collects data from hospitals, hospices, nursing homes and home care, with an end-of-life questionnaire (ELQ) about palliative care content focusing on the last week of life.AimsStudy I – The aim was to examine the validity of the ELQ from the SRPC.Study II – The aim was to examine whether participation in the SRPC increases the quality of palliative care over a three-year period regarding eight items in the ELQ.Study III – The aim was to examine whether an educational intervention for physicians and nurses in nursing homes and hospitals increases the proportion of patients who receive ITEOL.Study IV – The aim was to describe how patients with cancer perceive the information they receive from physicians during palliative chemotherapy.MethodsStudy I – Data from 100 medical records and data from the paper versions of the ELQ filled in at a specialised palliative unit were compared with data reported to the SRPC.Study II – Data from eight items in the ELQ reported to the SRPC from all healthcare units that had reported patients continuously during a three-year period were compared year-by-year with logistic regression.Study III – Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. Four hospitals and four municipalities were assigned matched controls. The proportion of patients who received ITEOL before and after the intervention was measured with the ELQ. The effect of the intervention was analysed with a multivariable logistic regression model.Study IV – Fifteen semi-structured interviews with patients with incurable cancer were conducted, transcribed verbatim and analysed with qualitative content analysis.ResultsStudy I – The questions in the ELQ showed a congruity of 22% to 100% when comparing data from medical records with data reported to the SRPC. Eight questions fell below 80%. The paper versions filled in at the unit and the data reported to the SRPC showed a congruity of between 91% and 100%.Study II – The prevalence of six symptoms decreased. The prescription of PRN (pro re nata – ‘as needed’) medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient’s next of kin was more often offered a follow-up appointment after the patient’s death. There was no change in the proportion of patients or next of kin who received ITEOL.Study III – The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a six-month period before the intervention) to 42.0% (during a six-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in the multivariable model.Study IV – Three categories were disclosed during the analytical process: ‘living with a death sentence’, ‘depending on chemotherapy’, and ‘living with uncertainty’.ConclusionsA national quality register has the potential of contributing to quality improvement in palliative care. Study I showed varied validity in the ELQ, implying a need to modify the questionnaire. Study II showed that participation in the SRPC was covariant with quality improvements in end-of-life care over time. Study III showed that more patients received ITEOL after an educative half-day intervention directed to physicians and nurses. Study IV showed that patients undergoing palliative chemotherapy perceived that their disease was incurable and deadly, and that conditions for future treatment and survival were uncertain.
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| 45. |
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| 46. |
- Melin-Johansson, Christina, 1956-, et al.
(författare)
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A third of dying patients do not have end-of-life discussions with a physician : A nationwide registry study
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press (CUP). - 1478-9515 .- 1478-9523. ; 20:3, s. 357-362
-
Tidskriftsartikel (refereegranskat)abstract
- Objective The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors. Method A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors. Results About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin. Significance of results The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.
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| 47. |
- Melin-Johansson, Christina
(författare)
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Att dö på sjukhus
- 2017
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Ingår i: Palliativ vård : tidskriften för palliativ vård i Sverige. - Stockholm : Nationella rådet för palliativ vård. - 2001-841X. ; :3
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 48. |
- Melin Johansson, Christina, 1956-
(författare)
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Att dö på sjukhus
- 2017
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Ingår i: Palliativ vård. - 2001-841X. ; :3, s. 6-9
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- Resultat från Palliativregistret visar att antalet rapporterade dödsfall från sjukhuskliniker minskar och den palliativa vården som erbjuds är av sämre kvalitet. Patienterna får därmed inte den trygga och säkra vård de har rätt till. Intresset och villkoren för palliativ vård inom akutsjukvården måste stärkas och utvecklas så att döende patienters välbefinnande och behov av stöd förbättras
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| 49. |
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| 50. |
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