| 1. |
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| 2. |
- 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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| 3. |
- 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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| 4. |
- 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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| 5. |
- Bernhardson, Britt-Marie, et al.
(författare)
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Sensations, symptoms, and then what? : Early bodily experiences prior to diagnosis of lung cancer
- 2021
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Ingår i: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 16:3
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Tidskriftsartikel (refereegranskat)abstract
- Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden. Using the bodily sensations they most commonly spoke about (tiredness, breathlessness, pain, and cough), we constructed four sensation-based cases to understand the pre-diagnostic processes of reasoning and practice triggered by these key indicators of LC. We thereafter critically applied Hay's model of sensations to symptoms transformation, examining its central concepts of duration, disability and vulnerability, to support understanding of these processes. We found that while duration and disability are clearly relevant, vulnerability is more implicitly expressed in relation to perceived threat. Tiredness, even when of long duration and causing disability, was often related to normal aging, rather than a health threat. Regardless of duration, breathlessness was disturbing and threatening enough to lead to care-seeking. Pain varied by location, duration and degree of disability, and thus also varied in degree of threat perceived. Preconceived, but unmet expectations of what LC-related cough and pain would entail could cause delays by misleading participants; if cough lasted long enough, it could trigger health care contact. Duration, disability, and sense of threat, rather than vulnerability, were found to be relevant concepts for understanding the trajectory to diagnosis for LC among these participants. The process by which an individual, their family and health care providers legitimize sensations, allowing them to be seen as potential symptoms of disease, is also an essential, but varying part of the diagnostic processes described here.
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| 6. |
- Dalhammar, Karin, et al.
(författare)
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Health care utilization among patients with oesophageal and gastric cancer : the impact of initial treatment strategy and assignment of a contact nurse
- 2021
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Patients diagnosed with oesophageal and gastric cancer face a poor prognosis and numerous challenges of symptom management, lifestyle adjustments and complex treatment regimens. The multifaceted care needs and rapid disease progression reinforce the need for proactive and coherent health care. According to the national cancer strategy, providing coherent health care and palliative support is an area of priority. More knowledge is needed about health care utilization and the characteristics of the health care service in order to understand the readiness, accessibility and quality of current health care. The aim of this study was to describe individuals’ health care use from the time of treatment decision until death, and investigate the impact of the initial treatment strategy and assignment of a contact nurse (CN) on health care use among patients with oesophageal and gastric cancer. Methods: This population-based cohort study included patients who died from oesophageal and gastric cancer in Sweden during 2014–2016. Through linking data from the National Register for Oesophageal and Gastric Cancer, the National Cause of Death Register, and the National Patient Register, 2614 individuals were identified. Associations between the initial treatment strategy and CN assignment, and health care use were investigated. Adjusted incidence rate ratios (IRRs) with 95% confidence intervals (CIs) were calculated using Poisson regression. Results: Patients receiving palliative treatment and those receiving no tumour-directed treatment had a higher IRR for unplanned hospital stays and unplanned outpatient care visits compared with patients who received curative treatment. Patients receiving no tumour-directed treatment also had a lower IRR for planned hospital stays and planned outpatient care visits compared with patients given curative treatment. Compared with this latter group, patients with palliative treatment had a higher IRR for planned outpatient care visits. Patients assigned a CN had a higher IRR for unplanned hospital stays, unplanned outpatient care visits and planned outpatient care visits, compared with patients not assigned a CN. Conclusions: A palliative treatment strategy and no tumour-directed treatment were associated with higher rates of unplanned health care compared with a curative treatment strategy, suggesting that a proactive approach is imperative to ensure quality palliative care.
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| 7. |
- Dalhammar, Karin, et al.
(författare)
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Striving towards normality in an unpredictable situation. A qualitative interview study of how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life
- 2023
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889. ; 63
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Getting an incurable oesophageal or gastric cancer diagnosis is a major stressful life event associated with severe physical, psychosocial and existential challenges. To provide timely and efficient support, based on patients' experiences, the aim of the study was to explore how patients newly diagnosed with incurable oesophageal and gastric cancer manage everyday life. Method: Semi-structured interviews were conducted with 12 patients 1–3 months after being diagnosed with incurable oesophageal or gastric cancer. Four participants were interviewed twice, which resulted in 16 interviews. Data were analysed with qualitative content analysis. Results: An overall theme, “Striving towards normality in an unpredictable situation”, with three related themes – “Trying to comprehend the disease”, “Dealing with the consequences of illness” and “Re-evaluating what is important in everyday life” – and seven sub-themes were identified. The participants described an unexpected and unpredictable situation, in which they strived to maintain their normal life. Amidst struggling to manage problems related to eating, fatigue and an incurable diagnosis the participants talked about the importance of focusing on the positive and normal aspects of life. Conclusions: The findings in this study point to the importance of supporting patients’ confidence and skills, particularly with regard to managing eating, so that they can hold on to their normal life as much as possible. The findings further point to the possible benefit of integrating an early palliative care approach and could provide guidance for nurses and other professionals on how to support patients post diagnosis.
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| 8. |
- Dalhammar, Karin, et al.
(författare)
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Symptoms, problems and quality of life in patients newly diagnosed with oesophageal and gastric cancer - a comparative study of treatment strategy
- 2022
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Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 22, s. 1-14
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Patients with oesophageal and gastric cancer have a low likelihood of being cured and suffer from a broad spectrum of symptoms and problems that negatively affect their quality-of-life (QOL). Although the majority (67-75%) of patients at the time of diagnosis suffer from an incurable disease, research has primarily focused on the pre- and postoperative phase among patients treated with curative intent, with little attention to symptoms and problems in the diagnostic phase, especially in those who cannot be offered a cure.METHODS: In this cross-sectional study 158 patients newly diagnosed with oesophageal and gastric cancer visiting the surgical outpatient department for a preplanned care visit were included consecutively during 2018-2020. The validated instruments QLQ-C30 and QLQ-OG25, developed by the European Organization for Research and Treatment of Cancer (EORTC), and selected items from the Integrated Patient Outcome Scale (IPOS) were used to assess QOL, symptoms and problems. Differences between patients with a curative and a palliative treatment strategy were analysed using t-test and Mann-Whitney U test. The QLQ-C30 and QLQ-OG25 scores were compared to published reference data on the general Swedish population.RESULTS: Among all, the QOL was markedly lower, compared with general Swedish population (mean ± SD, 55.9 ± 24.7 vs 76.4 ± 22.8, p < 0.001). Compared to general population, the patients had significant impairment in all QOL aspects, particularly for role and emotional functioning and for symptoms such as eating-related problems, fatigue, insomnia and dyspnea. Majority of patients also reported severe anxiety among family and friends. Among patients with oesophageal cancer those with a palliative treatment strategy, compared with curative strategy, reported significantly lower QOL (mean ± SD, 50.8 ± 28.6 vs 62.0 ± 22.9 p = 0.030), physical (65.5 ± 22.6 vs 83.9 ± 16.5, p < 0.001) and role functioning (55.7 ± 36.6 vs 73.9 ± 33.3, p = 0.012), and a higher burden of several symptoms and problems. No significant differences between treatment groups were shown among patients with gastric cancer.CONCLUSIONS: Patients newly diagnosed with oesophageal and gastric cancer, and especially those with incurable oesophageal cancer, have a severely affected QOL and several burdensome symptoms and problems. To better address patients' needs, it seems important to integrate a palliative approach into oesophageal and gastric cancer care.
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| 9. |
- Dalhammar, Karin, et al.
(författare)
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The impact of initial treatment strategy and survival time on quality of end-of-life care among patients with oesophageal and gastric cancer : A population-based cohort study
- 2020
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Ingår i: PLoS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 15:6
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Oesophageal and gastric cancer are highly lethal malignancies with a 5-year survival rate of 15-29%. More knowledge is needed about the quality of end-of-life care in order to understand the burden of the illness and the ability of the current health care system to deliver timely and appropriate end-of-life care. The aim of this study was to describe the impact of initial treatment strategy and survival time on the quality of end-of-life care among patients with oesophageal and gastric cancer. METHODS: This register-based cohort study included patients who died from oesophageal and gastric cancer in Sweden during 2014-2016. Through linking data from the National Register for Esophageal and Gastric Cancer, the National Cause of Death Register, and the Swedish Register of Palliative Care, 2156 individuals were included. Associations between initial treatment strategy and survival time and end-of-life care quality indicators were investigated. Adjusted risk ratios (RRs) with 95% confidence intervals were calculated using modified Poisson regression. RESULTS: Patients with a survival of ≤3 months and 4-7 months had higher RRs for hospital death compared to patients with a survival ≥17 months. Patients with a survival of ≤3 months also had a lower RR for end-of-life information and bereavement support compared to patients with a survival ≥17 months, while the risks of pain assessment and oral assessment were not associated with survival time. Compared to patients with curative treatment, patients with no tumour-directed treatment had a lower RR for pain assessment. No significant differences were shown between the treatment groups regarding hospital death, end-of-life information, oral health assessment, and bereavement support. CONCLUSIONS: Short survival time is associated with several indicators of low quality end-of-life care among patients with oesophageal and gastric cancer, suggesting that a proactive palliative care approach is imperative to ensure quality end-of-life care.
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| 10. |
- Drott, Jenny, et al.
(författare)
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Factors related to a successful professional development for specialist nurses in surgical care: a cross-sectional study
- 2023
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Ingår i: BMC Nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundA high level of competence among staff is necessary for providing patient-safe surgical care. Knowledge regarding what factors contribute to the professional development of specialist nurses in surgical care and why they choose to remain in the workplace despite high work requirements is needed. To investigate and describe the organizational and social work environment of specialist nurses in surgical care as part of studying factors that impact on professional development.MethodThis was a cross-sectional study with a strategic convenience sampling procedure that recruited 73 specialist nurses in surgical care in Sweden between October to December 2021. The study was guided by STROBE Statement and checklist of cross-sectional studies. The validated Copenhagen Psychosocial Questionnaire was used, and additional demographic data. Descriptive statistics were performed and the comparison to the population benchmarks was presented as the mean with a 95% confidence interval. To study potential differences among the demographic and professional characteristics, pairwise t tests were used with Bonferroni adjustment for multiple comparisons with a significance level of 5%.ResultsFive domains were identified as factors related to success, as they received higher scores in relation to population benchmarks: quality of leadership, variation of work, meaning of work and work engagement as well as job insecurity. There was also a significant association between a having a manager with low nursing education and job insecurity (p = 0.021).ConclusionsQuality of leadership is important for the professional development of specialist nurses in surgical care. Strategic work seems to include managers with a higher nursing education level to prevent insecure professional working conditions.
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| 11. |
- Hellstadius, Ylva, et al.
(författare)
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Reflecting a crisis reaction : Narratives from patients with oesophageal cancer about the first 6 months after diagnosis and surgery
- 2019
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Ingår i: Nursing Open. - : Wiley. - 2054-1058. ; 6:4, s. 1471-1480
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of the study was to describe patients' experiences of emotional adaption following treatment for oesophageal cancer from diagnosis to 6 months after surgery. Design: A qualitative interview study using an inductive approach was carried out. Methods: Participants were recruited from two university hospitals in Sweden. Ten patients who had been operated for oesophageal cancer with curative intent 6 months earlier and consented to participate in the study were included. Patients who had a disease recurrence were not eligible for inclusion. Participants were interviewed with a semi-structured interview approach. Data were analysed using qualitative content analysis. Results: One overarching theme was identified; Experiencing a crisis reaction, which comprised three key categories; (a) From emotionally numb to feeling quite alright; (b) From a focus on cure to reflections about a whole new life; and (c) From a severe treatment to suffering an emaciated, non-compliant body, derived from 14 distinct sub-categories. Conclusion: This study highlights the process of emotional adaptation following oesophageal cancer surgery that patients describe when reflecting back on the first 6 months postoperatively pointing to a crisis reaction in this early postoperative period.
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| 12. |
- Jakobsson, Jenny, 1975-, et al.
(författare)
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Work conditions influencing professional development of specialist nurses in surgical care explored using the Job Demand-Resources theory: A qualitative study
- 2023
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 79:7, s. 2610-2621
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Tidskriftsartikel (refereegranskat)abstract
- Aim:The aim of the study was to explore the work conditions that influence the opportunities for professional development of specialist nurses in surgical care. Design:A qualitative descriptive design was used. Methods:With a purposeful sampling procedure, 14 specialist nurses in surgical care were included. Four focus-group interviews were conducted during November to December 2021 and deductively analysed using the Job Demand-Resource theory as a guiding framework. Reporting adheres to COREQ guidelines. Findings:Work conditions that were identified as job demands and that inhibited nurses' opportunities for professional development were mainly found at an organizational and leadership level. Primarily, those conditions included role ambiguity and time constraints caused by uncompensated nursing shortages that restricted the nurses from exercising their role. Such conditions could also discourage other nurses from further education. Job demands were seen as largely compensated for by work conditions identified as job resources and located mainly at an individual level, for example finding the work interesting and multifaceted. Most prominent was the participants' inner motivation to work with surgical patients and to continue to develop themselves and other nurses professionally. Conclusions:A prerequisite for professional development is that the specialist role is clearly defined in collaboration with representatives from the nursing profession and universities. Hence, hospital organizations need to reflect on how to utilize the competence. Also, it is important that nurse leaders promote the specialist nurses' motivation by supporting them in the exercise of their role. Impact:Findings from this study revealed work conditions that need to be acknowledged during hospital organizations' endeavours to maintain and enhance nursing competence. Patient or Public Contribution:Patient or public contribution was not applicable since the study focused on specialist nurses' working conditions.
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| 13. |
- MacArtney, John I., et al.
(författare)
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The convivial and the pastoral in patient–doctor relationships : a multi-country study of patient stories of care, choice and medical authority in cancer diagnostic processes
- 2020
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Ingår i: Sociology of Health and Illness. - : Wiley. - 0141-9889 .- 1467-9566. ; 42:4, s. 844-861
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Tidskriftsartikel (refereegranskat)abstract
- Experiences of cancer diagnosis are changing in light of both the increasingly technological-clinical diagnostic processes and the socio-political context in which interpersonal relations take place. This has raised questions about how we might understand patient–doctor relationship marked by asymmetries of knowledge and social capital, but that emphasise patients’ empowered choices and individualised care. As part of an interview study of 155 participants with bowel or lung cancer across Denmark, England and Sweden, we explored participants’ stories of the decisions made during their cancer diagnostic process. By focusing on the intersections of care, choice and medical authority – a convivial pastoral dynamic – we provide a conceptual analysis of the normative ambivalences in people's stories of their cancer diagnosis. We found that participants drew from care, choice and medical authority to emphasise their relationality and interdependence with their doctors in their stories of their diagnosis. Importantly negotiations of an asymmetrical patient–doctor relationship were part of an on-going realisation of the healthcare processes as a human endeavour. We were therefore able to draw attention to the limitations of dichotomising emancipatory-empowerment discourses and argue for a theorisation of the patient–doctor relationship as a contextually bounded and relationally ambivalent humanity.
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| 14. |
- MacArtney, John, et al.
(författare)
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Patients' initial steps to cancer diagnosis in Denmark, England and Sweden : what can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?
- 2017
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 7:11
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms.DESIGN: Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer.PARTICIPANTS: 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview.SETTING: Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants' homes.RESULTS: Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden.CONCLUSION: We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.
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| 15. |
- Malmström, Marlene, et al.
(författare)
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It is important that the process goes quickly, isn't it?” A qualitative multi-country study of colorectal or lung cancer patients’ narratives of the timeliness of diagnosis and quality of care
- 2018
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 34, s. 82-88
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden. Method: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer. Data were collected via semi-structured narrative interviews and analysed using a thematic approach. Results: Participants’ accounts of quality of care were closely related to how quickly (or not) diagnosis, treatment and/or healthcare processes went. Kinetic metaphors as a description of care (such as treadmill) could be interpreted positively as participants were willing to forgo some degree of control and accept disruption to their lives to ensure more timely care. Drawing on wider cultural expectations of the benefits of diagnosing and treating cancer quickly, some participants were concerned that the waiting times between interventions might allow time for the cancer to grow. Conclusions: Initiatives emphasising the timeliness of diagnosis and treatment are reflected in the ways some patients experience their care. However, these accounts were open to further contextualisation about what speed of healthcare processes meant for evaluating the quality of their care. Healthcare professionals could therefore be an important patient resource in providing reassurance and support about the timeliness of diagnosis or treatment.
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| 16. |
- Malmström, Marlene, et al.
(författare)
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Long-term experiences after oesophagectomy/gastrectomy for cancer : A focus group study
- 2013
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Ingår i: International Journal of Nursing Studies. - : Elsevier BV. - 1873-491X .- 0020-7489. ; 50:1, s. 44-54
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: After surgery for oesophageal or gastric cancer, patients suffer from a variety of problems that affect their physical and mental health. Most previous studies on quality of life after this type of surgery are based on quantitative methods, and no studies to date have focused on the patient's subjective experiences of their quality of life from a long-term perspective. OBJECTIVE: To illuminate patients' experiences of their quality of life, and how they handle their new life situation, from a long-term perspective, after oesophagectomy or gastrectomy for cancer. METHOD: This study was carried out in accordance with a descriptive explorative design focusing on the patients' quality of life after surgery for oesophageal/gastric cancer. Data collection was carried out using semi-structured focus group interviews. A total of 17 participants divided into 4 focus groups were included (2-5 years after elective surgery) in the study. Data was analysed with qualitative content analysis. RESULTS: The results show that the patients' lives are severely hampered by adverse symptoms long time after surgery. The patients experienced the recovery period as a struggle and the theme "When moving on becomes a struggle" was shown to capture the patients' experiences. The main problems that acts as barriers in the patients' new life situation are those connected with nutrition and diarrhea who was shown not only affecting the patients from a physical perspective but also on a social and emotional level. The feeling of losing control of life was shown as a prominent problem and resulted in anxiety and fear about the future. CONCLUSION: This study shows that the patients' quality of life is heavily influenced by the remaining symptoms for a long time after surgery. However the patients ability to handle their new life situation does not only depend on the remaining symptom but on their ability to take control of the new life situation and learn to live life whit the symptoms instead of letting the symptoms limit their life. The complex new life situation that the patients meet after surgery motivates the needs of a supportive care programme, focusing on the patients' physical, mental and social needs.
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| 17. |
- Malmström, Marlene, et al.
(författare)
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Patient´s experiences of postoperative information after oesophageal or gastric cancer surgery : an interview study
- 2010
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- Objective: The aim of the study was to describe how patients who have undergone surgery due to oesophageal or gastric cancer experience the postoperative information before and after discharge from hospital. Methods: Eleven patients were interviewed. Interviews were tape-recorded, transcribed and latent content analysed. Results: Even though the patients describe being satisfied with the care at the hospital, many patients experienced the postoperative information as partly insufficient. Postoperative information helped patients experience control in their daily life, made them feel secure in the new life situation and confident about the future. The patients described needing information from several different sources at the hospital and after discharge. Conclusion: Information is fundamental to enable patients to manage their new life situation. It is a challenge for health care professionals to both standardise the postoperative information and individualise the information according to the needs of each individual. Studies are needed of implementation of an information program enabling patients to feel in control, secure and confident about the future.
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| 18. |
- Malmström, Marlene, et al.
(författare)
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Patient´s experiences of postoperative information after oesophageal or gastric cancer surgery : an interview study
- 2010
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- Objective: The aim of the study was to describe how patients who have undergone surgery due to oesophageal or gastric cancer experience the postoperative information before and after discharge from hospital. Methods: Eleven patients were interviewed. Interviews were tape-recorded, transcribed and latent content analysed. Results: Even though the patients describe being satisfied with the care at the hospital, many patients experienced the postoperative information as partly insufficient. Postoperative information helped patients experience control in their daily life, made them feel secure in the new life situation and confident about the future. The patients described needing information from several different sources at the hospital and after discharge. Conclusion: Information is fundamental to enable patients to manage their new life situation. It is a challenge for health care professionals to both standardise the postoperative information and individualise the information according to the needs of each individual. Studies are needed of implementation of an information program enabling patients to feel in control, secure and confident about the future.
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| 19. |
- Malmström, Marlene, et al.
(författare)
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Patients' experiences of supportive care from a long-term perspective after oesophageal cancer surgery - A focus group study.
- 2013
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Ingår i: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889. ; 17:6, s. 856-862
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Tidskriftsartikel (refereegranskat)abstract
- After oesophageal cancer surgery quality of life (QOL) is severely reduced for a long time. Even though this is a well-documented fact no previous studies have focused on the patients' experiences of supportive care after surgery. PURPOSE: To illuminate patients' experiences of supportive care from a long-term perspective after oesophagectomy or oesophagogastrectomy for cancer. METHOD: Data collection was carried out using semi-structured focus-group interviews. Seventeen patients were included in the study, divided into 4 focus groups. Data was analysed with conventional qualitative content analysis. RESULTS: The patients' experiences of supportive care were captured in the theme "The need for a guiding light in the new life situation" and it was shown that support from the healthcare system as well as from the social network was experienced as important. The patients need support that starts at the hospital and that continues throughout the transition to out-patient care. This support should focus on developing a plan for the future and on providing the patients with information that will enable them to understand their new life situation. CONCLUSION: The findings indicated that the patients need a plan for the future, help in navigating the healthcare system and the provision of clear and honest information as well as a healthcare system that better overarches the gap between in and out-patient care. This suggests the need of developing and testing a supportive care programme that is designed according to the patients' needs and with focus on the potential to enhance the patients QOL after this life-changing surgery.
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| 20. |
- Malmström, Marlene
(författare)
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Quality of Life and Supportive Care after Oesophageal Cancer Surgery. Long-term experiences and evaluation of a telephone based nurse-led supportive care programme
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- After oesophageal cancer surgery it is known that patients have a reduced QOL and that they suffer an unmet need of support. The overall aim of this thesis was to investigate patients’ experiences of QOL and supportive care as well as to evaluate a telephone based nurse-led supportive care programme to patients after oesophageal cancer surgery. The thesis comprises two quantitative (I, IV) and two qualitative studies (II, III). The aim of Study I was to evaluate changes in QOL over time as an indicator for the timing of support. The results showed that there is a significant QOL nadir at 2 months compared to 12 months after surgery. This was true for general QOL both for symptom- (p<0.001) and function scales (p<0.001) as well as for diagnose specific (oesophageal cancer) QOL symptoms (p<0.001). The aim of Studies II and III were to illuminate patients’ experiences of their QOL (II) and of supportive care (III) from a long-term perspective after surgery. Data collection was conducted with focus group interviews and the analyses were conducted with conventional qualitative content analysis. The results of Study II show that the patients’ lives are severely hampered by adverse symptoms for a long time after surgery and that the recovery period is experienced as a struggle. The main problems in the patients’ new life situation are those connected with nutrition and diarrhoea that was shown not only to affect the patients from a physical perspective but also from a social and emotional perspective. The results from Study III showed that the patients experienced that support after surgery was fundamental for their life after surgery. However, the patients experienced that their health care system was unclear and hard to navigate in and that there was a big gap between in- and outpatient care. The support needed to include physical, psychological and social issues throughout the whole cancer trajectory. Study IV was conducted as a RCT evaluating the effect of a telephone based nurse-led supportive care programme. The results show that the intervention group was significantly more satisfied with received information for items concerning ways in which they could help themselves (p=0.001), written information (p<0.001), and for the global information score (p=0.021) compared to the control group. The control group scored significantly higher on the item regarding the wish to receive more information (p<0.001). No effect of the intervention was shown on QOL or on the number of health care contacts. In conclusion, the results of this thesis show that the patients’ QOL is negatively affected after surgery (I, II) and that the patients are in a great need of supportive care to manage a life that is hampered by several remaining physical, psychological and social issues (III). The support needs to be individualised according to the patients’ needs, to be introduced at en early stage after surgery (I, III) and to continue throughout the whole cancer trajectory (III). The telephone based nurse-led supportive care programme was shown to have a significant effect on the patients’ experience of perceived information but no effect on QOL or health care contacts (IV).
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| 21. |
- Malmström, Marlene, et al.
(författare)
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Quality of life measurements as an indicator for timing of support after oesophagectomy for cancer: a prospective study.
- 2015
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- Oesophagectomy is a major procedure with known side effects and reduced postoperative quality of life (QOL). It has been shown that support of patients in their new life situation is often lacking. Knowledge about how QOL changes over time is fundamental for addressing patient needs and for determining the optimal timing of supportive care. The aim of this study was to identify QOL changes over time as well as factors that may impact patient QOL during the first year after oesophagectomy for cancer.
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| 22. |
- Malmström, Marlene, et al.
(författare)
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The effect of a nurse led telephone supportive care programme on patients’ quality of life, received information and health care contacts after oesophageal cancer surgery—A six month RCT-follow-up study
- 2016
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Ingår i: International Journal of Nursing Studies. - : Elsevier BV. - 0020-7489. ; 64, s. 86-95
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Tidskriftsartikel (refereegranskat)abstract
- Background Following oesophagectomy, a major surgical procedure, it is known that patients suffer from severely reduced quality of life and have an unmet need for postoperative support. Still, there is a lack of research testing interventions aiming to enhance the patients’ life situation after this surgical procedure. Aim The aim of the study was to evaluate the effect of a nurse led telephone supportive care programme on quality of life (QOL), received information and the number of healthcare contacts compared to conventional care following oesophageal resection for cancer. Method The study was designed as a randomized controlled trial (RCT) aiming to test the effect of a nurse led telephone supportive care program compared to conventional care. Patient assessments were conducted at discharge, 2 weeks, 2, 4 and 6 months after discharge and comprised evaluation of QOL, received information and the number of health care contacts. Statistical testing were conducted with repeated measurements analysis of variance to test if there were differences between the groups during follow-up. Result The results show that the intervention group was significantly more satisfied with received information for items concerning the information they received about things to do to help yourself, written information and for the global information score. The control group scored significantly higher on the item regarding wishing to receive more information and wish to receive less information. No effect of the intervention was shown on QOL or number of health care contacts. Conclusion Proactive nurse-led telephone follow-up has a significant positive impact on the patients’ experience of received information. This is likely to have a positive effect on their ability to cope with a life that may include remaining side effects and adverse symptoms for a long time after surgery.
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| 23. |
- Möller, Ulrika Olsson, et al.
(författare)
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Using Cards to Facilitate Conversations About Wishes and Priorities of Patients in Palliative Care
- 2020
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Ingår i: Journal of Hospice and Palliative Nursing. - : Lippincott Williams and Wilkins Ltd.. - 1522-2179 .- 1539-0705. ; 22:1, s. 33-39
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Tidskriftsartikel (refereegranskat)abstract
- To avoid discomfort, health care professionals may hesitate to pursue conversations about end of life with patients. Certain tools have the potential to facilitate smoother conversations in this matter. The objective was to explore the experiences of patients in palliative care in using statement cards to talk about their wishes and priorities. Forty-six cards with statements of wishes and priorities were developed and tested for feasibility with 40 participants, who chose the 10 most important cards and shared their thoughts about the statements and conversation. Data from individual interviews and field notes were analyzed using content analysis. One category describes practical aspects of using the cards including the relevance of the content and the process of sorting the cards. The second category describes the significance of using the cards including becoming aware of what is important, sharing wishes and priorities, and reflecting on whether wishes and priorities change closer to death. The cards helped raise awareness and verbalize wishes and priorities. All statements were considered relevant. The conversations focused not only on death and dying, but also on challenges in the participants' current life situation. For the most ill and frail participants, the number of cards needs to be reduced.
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| 24. |
- Ohlsson, Håkan, et al.
(författare)
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Impact of Specific Bowel Symptoms on Quality of Life in Patients with Midgut Neuroendocrine Tumours
- 2021
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Ingår i: World Journal of Surgery. - : Springer Science and Business Media LLC. - 0364-2313 .- 1432-2323. ; 45, s. 2793-2803
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Patients with midgut neuroendocrine tumours (NETs) suffer from decreased health-related quality of life (HRQoL), in large part due to bowel symptoms. However, it is unknown which bowel symptoms affect HRQoL the most. An enhanced understanding of this is essential to better focus treatment on this aspect of the disease. This study aimed to determine which bowel symptoms affect HRQoL the most in patients with midgut NETs. Methods: Consenting patients with midgut NET completed the Memorial Sloan Kettering Bowel Function Instrument and the HRQoL questionnaire (EORTC QLQ-C30). The correlation between bowel symptoms and HRQoL was analysed using multiple linear regression, adjusting for age, Charlson Comorbidity Index score, presence of metastatic disease, chromogranin A, and BMI yielding ß-coefficients with 95% confidence intervals. Results: Totally, 119 patients with midgut NET completed the questionnaires and were included in the study. Loose stool and bowel frequency ≥ 3/day were the most common bowel symptoms, reported by 47% and 56% of patients, respectively. However, sensitivity to certain types of food and beverages, a feeling of incomplete emptying of the bowel, and soiling were the symptoms most strongly correlated with decreased HRQoL, especially within domains concerning role and social function, with ß-coefficients for the strongest correlated symptoms of 15.0 and 14.6, respectively. Discussion: While symptoms concerning stool consistency and frequency are common in patients with midgut NET, our study suggests that other, more socially stigmatising symptoms affect patients’ HRQoL more. Our findings could help caregivers understand patients’ perceptions of the disease and provide avenues for more directed therapies.
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| 25. |
- Ohlsson, Håkan, et al.
(författare)
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Relationship between somatostatin receptor expressing tumour volume and health-related quality of life in patients with metastatic GEP-NET
- 2022
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Ingår i: Journal of Neuroendocrinology. - : Wiley. - 0953-8194 .- 1365-2826. ; 34:6
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Tidskriftsartikel (refereegranskat)abstract
- For patients with gastroenteropancreatic neuroendocrine tumours (GEP-NET), health-related quality of life (HRQoL) is important. Meanwhile, whether tumour volume is associated with HRQoL is unknown. Hence, the aim of this study was to assess if total somatostatin receptor expressing tumour volume is correlated with HRQoL in patients with metastatic GEP-NET. Some 71 patients were included in the study. HRQoL and NET-specific symptoms were assessed with EORTC QLQ-C30 and EORTC GI.NET21. A summary score was calculated from the output of the QLQ-C30. Total somatostatin receptor expressing tumour volume was retrospectively evaluated on somatostatin receptor imaging with positron emission tomography-computed tomography (68Ga-DOTA-TATE/TOC PET-CT) in each patient. Simple and multiple linear regression were used to evaluate the correlation between tumour volume and HRQoL, controlling for potential confounders. No correlation was found between total somatostatin receptor expressing tumour volume and QLQ-C30 summary score. Weak positive correlations were found between total tumour volume and the specific symptoms dyspnoea, diarrhoea and flushing. To the best of our knowledge, this is the first study to evaluate the association between total somatostatin expressing tumour volume and HRQoL. Our results indicate that, while tumour volume is weakly associated with symptom severity of the carcinoid syndrome, other factors might impact more on overall HRQoL.
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| 26. |
- Olsson, Ing-Marie, et al.
(författare)
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Feasibility and Relevance of an Intervention with Systematic Screening as a Base for Individualized Rehabilitation in Breast Cancer Patients : A Pilot Trial of the ReScreen Randomized Controlled Trial
- 2022
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Ingår i: Journal of Multidisciplinary Healthcare. - : Dove Medical Press Ltd.. - 1178-2390. ; 15, s. 1057-1068
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Tidskriftsartikel (refereegranskat)abstract
- Background: A substantial proportion of women with breast cancer (BC) experience a wide range of long-term persistent and troublesome side effects related to the disease and its treatment. The ReScreen randomized controlled trial is conducted aiming to evaluate the effect of early screening of distress followed by individualized rehabilitation after primary BC treatment. Purpose: To examine recruitment, retention, distribution of distress, relevance of intervention and reported problems in a pilot trial of the ReScreen RCT. Patients and methods: Based on international research, a cutoff of ≥7 on the Distress Thermometer was used to identify women in need of extended support. Those who reported high distress were randomized to intervention group (IG, n = 9) or control group (CG, n = 9), while women with low distress formed an observational group (OG, n = 67). Self-reported data was collected at baseline, 2 weeks and 3, 6, 9, and 12 months after start of treatment. The participants were recruited from a BC unit in Sweden. Descriptive statistics were used for analyses. Results: Eighty-five patients consented to participate. The recruitment rate was 73%, answer frequency was 98%, 64%, 95%, and retention rate was 100%, 56%, 91% in the IG, CG and OG, respectively. Few systematic errors were identified. When exploring the distribution of distress, it was evident that the participants scoring ≥7 were fewer (21.2%) than reported in previous studies (34-43%). The most commonly problems reported were in line with previous reports of symptoms, including fatigue and worry. Conclusion: The satisfactory rates of inclusion and data collection and the few systematic errors indicate that the ReScreen study is feasible if well planned and executed. To identify patients in need of extended support, an adjustment of the cutoff in the main study is indicated. Based on self-reported problems, the intervention was found relevant in this context.
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| 27. |
- Olsson Möller, Ulrika, et al.
(författare)
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Barriers and facilitators for individualized rehabilitation during breast cancer treatment : a focus group study exploring health care professionals' experiences
- 2020
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Ingår i: BMC Health Services Research. - 1472-6963 .- 1472-6963. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Breast cancer (BC) and related treatment are associated with the risk of developing a wide range of persistent disabling impairments. Despite extensive research in the field and an enhanced focus on BC rehabilitation, up to 34-43% of these patients are at risk of developing chronic distress. In addition, it is known that these patients repeatedly report unmet needs, which are strongly associated with reduced quality of life. However, despite knowledge that patients' needs for support during BC rehabilitation varies greatly, individualized rehabilitation is often lacking. Therefore, this study aimed to explore health care professionals' (HCPs) experiences of current rehabilitation practice and describe current barriers and facilitators for individualized rehabilitation for patients following BC treatment.METHODS: A total of 19 HCPs were included, representing various professions in BC care/rehabilitation within surgical, oncological and specialized cancer rehabilitation units at a university hospital in Sweden. Five semi structured focus group interviews were conducted and inductively analysed using conventional qualitative content analysis.RESULTS: Three categories were captured: (1) varying attitudes towards rehabilitation; (2) incongruence in how to identify and meet rehabilitation needs and (3) suboptimal collaboration during cancer treatment. The results showed a lack of consensus in how to optimize individualized rehabilitation. It also illuminated facilitators for individualized rehabilitation in terms of extensive competence related to long-term experience of working with patients with BC care/rehabilitation. Further, the analysis exposed barriers such as a great complexity in promoting individualized rehabilitation in a medically and treatment-driven health care system, which lacked structure and knowledge, and overarching collaboration for rehabilitation.CONCLUSION: This study suggests that the cancer trajectory is medically and treatment-driven and that rehabilitation plays a marginal role in today's BC trajectory. It also reveals that structures for systematic screening for needs, evidence-based guidelines for individualized rehabilitation interventions and structures for referring patients for advanced rehabilitation are lacking. To enable optimal and individualized recovery for BC patients', rehabilitation needs to be an integrated part of the cancer trajectory and run in parallel with diagnostics and treatment.
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| 28. |
- Olsson Möller, Ulrika, et al.
(författare)
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Barriers and facilitators for individualized rehabilitation during breast cancer treatment- A focus group study exploring health care professionals' experiences
- 2020
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20
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Tidskriftsartikel (refereegranskat)abstract
- Background: Breast cancer (BC) and related treatment are associated with the risk of developing a wide range of persistent disabling impairments. Despite extensive research in the field and an enhanced focus on BC rehabilitation, up to 34-43% of these patients are at risk of developing chronic distress. In addition, it is known that these patients repeatedly report unmet needs, which are strongly associated with reduced quality of life. However, despite knowledge that patients' needs for support during BC rehabilitation varies greatly, individualized rehabilitation is often lacking. Therefore, this study aimed to explore health care professionals' (HCPs) experiences of current rehabilitation practice and describe current barriers and facilitators for individualized rehabilitation for patients following BC treatment. Methods: A total of 19 HCPs were included, representing various professions in BC care/rehabilitation within surgical, oncological and specialized cancer rehabilitation units at a university hospital in Sweden. Five semi structured focus group interviews were conducted and inductively analysed using conventional qualitative content analysis. Results: Three categories were captured: (1) varying attitudes towards rehabilitation; (2) incongruence in how to identify and meet rehabilitation needs and (3) suboptimal collaboration during cancer treatment. The results showed a lack of consensus in how to optimize individualized rehabilitation. It also illuminated facilitators for individualized rehabilitation in terms of extensive competence related to long-term experience of working with patients with BC care/rehabilitation. Further, the analysis exposed barriers such as a great complexity in promoting individualized rehabilitation in a medically and treatment-driven health care system, which lacked structure and knowledge, and overarching collaboration for rehabilitation. Conclusion: This study suggests that the cancer trajectory is medically and treatment-driven and that rehabilitation plays a marginal role in today's BC trajectory. It also reveals that structures for systematic screening for needs, evidence-based guidelines for individualized rehabilitation interventions and structures for referring patients for advanced rehabilitation are lacking. To enable optimal and individualized recovery for BC patients', rehabilitation needs to be an integrated part of the cancer trajectory and run in parallel with diagnostics and treatment.
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| 29. |
- Pitois, Claire, et al.
(författare)
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Fluorinated dendritic polymers and dendrimers for waveguide applications
- 2003
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Ingår i: Optical materials (Amsterdam). - 0925-3467 .- 1873-1252. ; 21:1-3, s. 499-506
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Tidskriftsartikel (refereegranskat)abstract
- I Fluorinated hyperbranched polymers and dendrimers with low optical losses and functionality to modify refractive index and add a cross-linking unit were developed. The results of refractive index. measurements indicate a tunability of the refractive index between approximately 1.5 and 1.6, and optical losses below 0.5 dB/cm at 1550 nm. Dendrimers with similar, surface group structure and possibility to surface functionalization were prepared using a lanthanide. cation as focal point. Results on luminescent properties in the NIR and IR regions were measured for lanthanide ions such as Nd3+ and Er3+, showing characteristic emission bands at 1.06, 1.3 and 1.5 mum. The associated absorption and excitation spectra were found similar to those of the corresponding ions in optical glasses.
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| 30. |
- Rodlert, Marlene, et al.
(författare)
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Chiral dendritic polymers for photonic applications
- 2002
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Ingår i: Synthetic metals. - 0379-6779 .- 1879-3290. ; 127:03-jan, s. 37-43
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Tidskriftsartikel (refereegranskat)abstract
- We present chiral dendrons of different generations accomplished by reacting the hydroxyl groups at the chain ends with (-)menthoxyacetic acid. Subsequent deprotection of the carboxylic acid rendered acid functional chiral dendrons. The acid-functionalized chiral dendrons were doped with divalent cations CU2+, Fe2+ and Zn2+, and trivalent lanthanide cations Nd3+ and Pr3+. We present results on their optical rotatory power along with circular dichroism spectroscopy and results of paramagnetic resonance. The chiral dendrons were shown to influence the electronic transitions of the metal ions (CD spectra). Attempts to characterize the circularly polarized luminescence of the Nd-dendrimer failed due to low quantum yield. The luminescence efficiency was found to be at least one order of magnitude lower than that of a fluorinated and non-chiral dendrimer structure of similar size and coordination structure.
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| 31. |
- Rosell, Linn, et al.
(författare)
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Health professionals’ views on key enabling factors and barriers of national multidisciplinary team meetings in cancer care : A qualitative study
- 2020
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Ingår i: Journal of Multidisciplinary Healthcare. - 1178-2390. ; 13, s. 179-186
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Multidisciplinary team meetings (MDTMs) are an integral component of cancer care. Increasingly, virtual MDTMs are used to grant high-quality treatment recommendations across health-care regions, which expands and develops the local MDTM team to a regional or national expert network. We investigated health professionals’ experiences from national, virtual MDTMs for rare cancer with a focus on key enabling factors and barriers. Methods: Health professionals who participate in seven national, virtual MDTMs in Swedish health-care responded to a questionnaire exploring key enabling factors, barriers and opportunities for MDTM development. Conventional content analysis was used to identify thematic categories based on free-text responses. Results: Participants´ perspectives could be assigned into three categories ie, a national arena with potential for comprehensive knowledge and collaboration, prerequisites for decision-making and organization and responsibilities. These categories consisted of nine sub-categories that referred to, eg, collective competence, resources, clinical research, case discussion, meeting climate, patient-related information, MDTMs potential, referral and technical insufficiencies. Conclusion: National, virtual MDTMs represent a new multidisciplinary collaborative arena that introduces benefits as well as challenges. Consideration of key enabling factors and barriers may ease implementation and further optimize MDTMs in cancer care.
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| 32. |
- Rosell, Linn, et al.
(författare)
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Registered nurses’ views on consideration of patient perspectives during multidisciplinary team meetings in cancer care
- 2022
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Ingår i: BMC Nursing. - : Springer Science and Business Media LLC. - 1472-6955. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Multidisciplinary team meetings (MDTMs) represent an integral component of modern cancer care and have increasingly been implemented to ensure accurate and evidence-based treatment recommendations. During MDTMs, multiple and complex medical and patient-related information should be considered by a multi-professional team whose members contribute various perspectives. Registered nurses (RNs) are expected to share information on the patient perspective at MDTMs. However, research suggests that RNs’ contributions to case discussions are limited and that patient perspective is generally underrepresented. Our aim was to explore RNs’ views of the prerequisites for and barriers to the inclusion of the patient perspective in MDTMs in Swedish cancer care. Methods: Data were collected from four focus group interviews with 22 RNs who worked as contact nurses in Swedish cancer care. Interviews were transcribed and analysed using inductive content analysis. Results: The analysis identified two categories and five subcategories. The participants presented different views and expressed ambivalence about the patient perspective in MDTMs. Subcategories were related to medical versus holistic perspectives, the added value of patient perspective, and possibilities for patient contributions. The participants also discussed prerequisites for the patient perspective to be considered in MDTM decision-making process, with subcategories related to structures promoting attention to the patient perspective and determinants of RNs’ contributions to case discussions in MDTMs. Conclusions: This study demonstrates various views related to the patient perspective in MDTMs and identifies a great need to clarify the RN’s role. Our results indicate that if enhanced presentation of the patient perspective in MDTMs is desired, key information points and structures must be established to collect and present relevant patient-related information.
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| 33. |
- Sand Andersen, Rikke, et al.
(författare)
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Caring as sharing. Negotiating the moral boundaries of receiving care
- 2020
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Ingår i: Critical Public Health. - : Informa UK Limited. - 0958-1596 .- 1469-3682. ; 30:5, s. 567-576
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Tidskriftsartikel (refereegranskat)abstract
- Informal caregiving is increasingly considered a health care delivery-resource within the North European welfare states. While ‘informal’ often refers to non-professional, ‘caregiving’ connotes both affective concern (caring about) and practical action (caring for). This duality of meanings, however, often refers to the one direction in which care is given. Care, we suggest, is relational and also requires that people receiving care are able to or wanting to share their needs. Informal caregiving thus requires sharing. Based on 155 semi-structured, narrative interviews with people with lung or bowel cancer, living in Denmark, Sweden or England, this paper explores how and with whom people ‘share’ when they fall ill. We approach sharing as a heuristic for reflecting on informal-caregiving, and illustrate how being cared for or asking for care are entangled with the management of social risks and notions of selfhood. We conclude that informal caregiving should explicitly be recognised as morally and sympathetically committed practices, which attend to the diversity of local moral worlds of patients, their needs and experiences.
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| 34. |
- Sunde, Berit, et al.
(författare)
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Health-related quality of life one year after the diagnosis of oesophageal cancer : a population-based study from the Swedish National Registry for Oesophageal and Gastric Cancer
- 2021
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Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Population-based patient reported outcome data in oesophageal cancer are rare. The main purpose of this study was to describe health-related quality of life (HRQOL) 1 year after the diagnosis of oesophageal cancer, comparing subgroups of curatively and palliatively managed patients. Methods: This is a nationwide population-based cohort study, based on the Swedish National Registry for Oesophageal and Gastric Cancer (NREV) with prospectively registered data, including HRQOL instruments from the European Organisation for Research and Treatment of Cancer including the core and disease specific questionnaires (EORTC QLQ-C30 and QLQ-OG25). Patients diagnosed with oesophageal cancer between 2009 and 2016 and with complete HRQOL data at 1 year follow-up were included. HRQOL of included patients was compared to a reference population matched by age and gender to to a previous cohort of unselected Swedish oesophageal cancer patients. Linear regression was performed to calculate mean scores with 95% confidence intervals (CI) and adjusted linear regression analysis was used to calculate mean score differences (MD) with 95% CI. Results: A total of 1156 patients were included. Functions and global health/quality of life were lower in both the curative and palliative cohorts compared to the reference population. Both curatively and palliatively managed patients reported a severe symptom burden compared to the reference population. Patients who underwent surgery reported more problems with diarrhoea compared to those treated with definitive chemoradiotherapy (dCRT) (MD -14; 95% CI − 20 to − 8). Dysphagia was more common in patiens treated with dCRT compared to surgically treated patients (MD 11; 95% CI 4 to 18). Those with palliative intent due to advanced tumour stage reported more problems with dysphagia compared to those with palliative intent due to frailty (MD -18; 95% CI − 33 to − 3). Conclusions: One year after diagnosis both curative and palliative intent patients reported low function scores and severe symptoms. Dysphagia, choking, and other eating related problems were more pronounced in palliatively managed patients and in the curative intent patients treated with dCRT.
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| 35. |
- Tödt, Kristina, 1966-
(författare)
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Fatigue in long-term illness : Influencing factors and functional performance in chronic obstructive pulmonary disease and in cancer
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Syfte: Avhandlingen studerade sambandet mellan fatigue (trötthet) och valda inverkande faktorer, funktionsförmåga (fysisk och daglig aktivitet och arbetsförmåga) samt med hälsorelaterad livskvalitet (HRQL) vid kroniskt obstruktiv lungsjukdom (KOL) och vid cancer. Metod: Patienter med KOL (n=121, delarbete I-II) och patienter med cancer under pågående strålbehandling (n=457, delarbete III) studerades i tvärsnittsstudier. Canceröverlevare följdes longitudinellt upp sju år efter strålbehandling (n=215, jämfört med 172 matchade icke-cancerreferenter, delarbete IV). Data samlades in genom frågeformulär och kliniska bedömningar. Beskrivande och inferentiell statistik användes.Resultat: Fatigue förekom hos 74% av patienterna med KOL, 72% hos patienterna under cancerbehandling, 58% hos långtids-canceröverlevarna samt 41% av referenterna. Svårare sjukdom och sämre ansträngningsförmåga vid KOL, och samsjuklighet och nedstämdhet vid cancer under strålbehandling var associerat med större sannolikheten för fatigue. Fatigue under tidigare strålbehandling, och nuvarande nedstämdhet, smärta och antal symptom var associerat med fatigue vid uppföljningen. Svår fatigue hade samband med låg fysisk aktivitet vid KOL och fatigue vid strålbehandling med mindre fysisk och daglig aktivitet och sämre HRQL. Under strålbehandling rapporterade patienter med fatigue 60% sjukfrånvaro gentemot 40% utan. Fatigue hade minskat vid uppföljning men var värre än hos referenterna. Fysisk och daglig aktivitet hade förbättrats och var inte sämre än referenternas. Självskattad arbetsförmåga och arbetsprocent var dock lägre. Fatigue och tilltron till sin arbetsförmåga var associerat med självskattad arbetsförmåga hos canceröverlevare som arbetade. Konklusion: Att uppmärksamma fatigue kan underlätta för hälso och sjukvårdspersonal att identifiera och ge stöd till patienter med nedsatt funktionsförmåga samt till canceröverlevare med risk för långvarig fatigue och påverkad arbetsförmåga.
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