1. |
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2. |
- Beal, Jacob, et al.
(author)
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Robust estimation of bacterial cell count from optical density
- 2020
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In: Communications Biology. - : Springer Science and Business Media LLC. - 2399-3642. ; 3:1
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Journal article (peer-reviewed)abstract
- Optical density (OD) is widely used to estimate the density of cells in liquid culture, but cannot be compared between instruments without a standardized calibration protocol and is challenging to relate to actual cell count. We address this with an interlaboratory study comparing three simple, low-cost, and highly accessible OD calibration protocols across 244 laboratories, applied to eight strains of constitutive GFP-expressing E. coli. Based on our results, we recommend calibrating OD to estimated cell count using serial dilution of silica microspheres, which produces highly precise calibration (95.5% of residuals <1.2-fold), is easily assessed for quality control, also assesses instrument effective linear range, and can be combined with fluorescence calibration to obtain units of Molecules of Equivalent Fluorescein (MEFL) per cell, allowing direct comparison and data fusion with flow cytometry measurements: in our study, fluorescence per cell measurements showed only a 1.07-fold mean difference between plate reader and flow cytometry data.
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3. |
- Ahlström, Gerd, et al.
(author)
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Similarities and differences between China and Sweden regarding the core features of palliative care for people aged 60 or older : a systematic scoping review
- 2022
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In: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 21
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Journal article (peer-reviewed)abstract
- BACKGROUND: Despite the increasing longevity of the world's population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden.METHODS: The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used. Empirical studies on patients 60 years or older, next of kin or staff participating in a palliative care intervention or setting were included. They were conducted in mainland China or in Sweden during 2007-2019, were published in English and were extracted from seven databases: Embase, PubMed, Scopus, Cinahl, PsycInfo, Academic Search Complete and Cochrane Library. Two independent researchers conducted the selection of studies, data extraction and methodological evaluation. Any disagreements were resolved in consultation with a third researcher. The analysis was manifest directed content analysis based on PICOS domains.RESULTS: Of the 15 studies, four were from mainland China and 11 from Sweden. Both countries included older patients with cancer but also other end-stage diseases such as heart failure and dementia. The studies differed in design, method and the content of the interventions. The study in China based on traditional Chinese medicine concerns traditional Chinese folk music. The six qualitative studies from Sweden were evaluations of five interventions.CONCLUSIONS: Despite the high age of the participating patients, there was no focus on an ageing perspective concerning palliative care. To adapt to the changes taking place in most societies, future research should have increased focus on older persons' need for palliative care and should take account of issues concerning research ethics, ethnicity and culture.REGISTERED IN PROSPERO: CRD42020078685 , available from.
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4. |
- Alftberg, Åsa, et al.
(author)
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Conversations about Death and Dying with Older People : An Ethnographic Study in Nursing Homes
- 2018
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In: Healthcare. - : MDPI. - 2227-9032. ; 6:2
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Journal article (peer-reviewed)abstract
- Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.
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5. |
- Alvariza, Anette, et al.
(author)
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Ny definition av palliativ vård med fokus på lidande
- 2020
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In: Lakartidningen. - 0023-7205 .- 1652-7518. ; 117
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Journal article (peer-reviewed)abstract
- Palliative care was initially developed for patients with a cancer diagnosis and severe symptoms. Despite the ambition to broaden the palliative care approach to include other groups, patients with cancer are still a majority in specialised palliative care. The broader view and development of palliative care has led to an intense debate on existing definitions. Following a request from The Lancet Commission on global palliative care, the International Association of Hospice and Palliative Care (IAHPC) has presented a new definition. The proposal was developed in several stages, in collaboration with specialists in palliative care from a total of 88 countries. The IAHPC's definition differs from the WHO's definition in several aspects. Most importantly, the IAHPC's definition takes a reversed perspective and instead of focusing on life-threatening illness as motivating palliative care, the new proposal focuses on serious suffering of a person with severe illness.
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6. |
- Alvariza, Anette, et al.
(author)
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Omvårdnad i livets slut
- 2019
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In: Edberg A-K & Wijk H (Red). Omvårdnadens grunder: Hälsa och ohälsa. - Lund : Studentlitteratur AB. ; , s. 707-745, s. 707-745
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Book chapter (other academic/artistic)
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7. |
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8. |
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9. |
- Beck, Ingela, et al.
(author)
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Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care : A qualitative focus group study
- 2023
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In: Nursing Open. - : Wiley-Blackwell Publishing Ltd. - 2054-1058. ; 10:12, s. 7639-7649
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Journal article (peer-reviewed)abstract
- AIM : To explore nurses' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care. DESIGN : This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting. METHODS : Five focus groups were conducted with nurses from four specialized palliative care units, and the discussions were analysed with quality content analysis. RESULTS : Using IPOS for communication with the patient gave an opportunity to understand the patient's care needs and to let these care needs guide care interventions. Prerequisites in terms of relation, atmosphere, skills and flexibility were needed to establish an interactive communication. It was challenging to communicate about issues that evoked emotional reactions in the patient. There was a balancing act between the use of a structured scale and overcoming communication challenges. Nonetheless, when the two complemented each other, IPOS was a useful tool for nurses to promote person-centred care.
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10. |
- Beck, Ingela, et al.
(author)
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Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden
- 2016
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In: Palliative Medicine.
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Conference paper (other academic/artistic)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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11. |
- Beck, Ingela, et al.
(author)
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Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden
- 2016
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X.
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Conference paper (other academic/artistic)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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12. |
- Beck, Ingela, et al.
(author)
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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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In: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 16:1
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Journal article (peer-reviewed)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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13. |
- Bernhardson, Britt-Marie, et al.
(author)
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Sensations, symptoms, and then what? : Early bodily experiences prior to diagnosis of lung cancer
- 2021
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In: PLOS ONE. - : Public Library of Science. - 1932-6203. ; 16:3
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Journal article (peer-reviewed)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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14. |
- Birgisdóttir, Dröfn, et al.
(author)
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A novel care guide for personalised palliative care – a national initiative for improved quality of care
- 2021
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In: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 20, s. 1-12
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Journal article (peer-reviewed)abstract
- BackgroundEven when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide.MethodsThe Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings.ResultsAfter extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients’ needs and possibilities for ensuring optimal quality of life, the family included.ConclusionsBased on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and personnel.
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15. |
- Borgström, Birgit, et al.
(author)
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Fertility preservation in girls with turner syndrome : prognostic signs of the presence of ovarian follicles
- 2009
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In: Journal of Clinical Endocrinology and Metabolism. - : The Endocrine Society. - 0021-972X .- 1945-7197. ; 94:1, s. 74-80
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Journal article (peer-reviewed)abstract
- CONTEXT: Many girls with Turner syndrome have follicles in their ovaries at adolescence. Objective: Our objective was to study which girls might benefit from ovarian tissue freezing for fertility preservation. Design: Clinical and laboratory parameters and ovarian follicle counts were analyzed among girls referred by 25 pediatric endocrinologists. SUBJECTS AND SETTING: Fifty-seven girls with Turner syndrome, aged 8-19.8 yr, were studied at a university hospital. Interventions: Ovarian tissue was biopsied laparoscopically, studied for the presence of follicles, and cryopreserved. Blood samples were drawn for hormone measurements. MAIN OUTCOME MEASURES: Presence of follicles in the biopsied tissue related to age, signs of spontaneous puberty, karyotype, and serum concentrations of gonadotropins and anti-Müllerian hormone were assessed. RESULTS: Ovarian biopsy was feasible in 47 of the 57 girls. In 15 of the 57 girls (26%), there were follicles in the tissue piece analyzed histologically. Six of seven girls (86%) with mosaicism, six of 22 (27%) with structural chromosomal abnormalities, and three of 28 with karyotype 45X (10.7%) had follicles. Eight of the 13 girls (62%) with spontaneous menarche had follicles, and 11 of the 19 girls (58%) who had signs of spontaneous puberty had follicles. The age group 12-16 yr had the highest proportion of girls with follicles. Normal FSH and anti-Müllerian hormone concentrations for age and pubertal stage were more frequent in girls with follicles. CONCLUSIONS: Signs of spontaneous puberty, mosaicism, and normal hormone concentrations were positive and statistically significant but not exclusive prognostic factors as regards finding follicles.
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16. |
- Dahm, Christina C., et al.
(author)
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Fatty acid patterns and risk of prostate cancer in a case-control study nested within the European Prospective Investigation into Cancer and Nutrition
- 2012
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In: American Journal of Clinical Nutrition. - : Elsevier BV. - 0002-9165 .- 1938-3207. ; 96:6, s. 1354-1361
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Journal article (peer-reviewed)abstract
- Background: Fatty acids in blood may be related to the risk of prostate cancer, but epidemiologic evidence is inconsistent. Blood fatty acids are correlated through shared food sources and common endogenous desaturation and elongation pathways. Studies of individual fatty acids cannot take this into account, but pattern analysis can. Treelet transform (TT) is a novel method that uses data correlation structures to derive sparse factors that explain variation. Objective: The objective was to gain further insight in the association between plasma fatty acids and risk of prostate cancer by applying TT to take data correlations into account. Design: We reanalyzed previously published data from a case-control study of prostate cancer nested within the European Prospective Investigation into Cancer and Nutrition (EPIC) cohort. TT was used to derive factors explaining the variation in 26 plasma phospholipid fatty acids of 962 incident prostate cancer cases matched to 1061 controls. Multiple imputation was used to deal with missing data in covariates. ORs of prostate cancer according to factor scores were determined by using multivariable conditional logistic regression. Results: Four simple factors explained 38% of the variation in plasma fatty acids. A high score on a factor reflecting a long-chain n-3 PUFA pattern was associated with greater risk of prostate cancer (OR for highest compared with lowest quintile: 1.36; 95% CI: 0.99, 1.86; P-trend = 0.041). Conclusion: Pattern analyses using TT groupings of correlated fatty acids indicate that intake or metabolism of long-chain n-3 PUFAs may be relevant to prostate cancer etiology. Am J Clin Nutr 2012;96:1354-61.
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17. |
- Dalhammar, Karin, et al.
(author)
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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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In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889. ; 63
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Journal article (peer-reviewed)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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18. |
- Dalhammar, Karin, et al.
(author)
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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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In: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 22, s. 1-14
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Journal article (peer-reviewed)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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19. |
- Dalheim Englund, Ann-Charlotte, et al.
(author)
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Having a child with asthma : quality of life for Swedish parents
- 2004
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 13:3, s. 386-395
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Journal article (peer-reviewed)abstract
- BACKGROUND: Asthma is the most common chronic childhood disease. Childhood asthma contributes significantly to morbidity among children and has a significant impact on the quality of life (QoL) and daily routines of both the children and their parents. AIM AND OBJECTIVE: The purpose of this study was to investigate how Swedish parents of children with asthma experience their QoL, and to investigate whether there were differences concerning QoL between parents within the same family. The purpose was also to investigate possible connections between their QoL and background variables. METHOD: A total of 371 parents of children with asthma (57% mothers and 43% fathers) participated in the study. The Paediatric Asthma Caregiver's Quality Of Life Questionnaire (PACQLQ) was used to measure the parents' QoL, i.e. how the child's asthma interferes with the parents' normal activities and how it has made them feel. RESULTS: The findings show that most parents of children with asthma evaluated their QoL as close to the positive end of the scale, and there was close agreement in the scoring between parents within the same family. Significant associations were found between parents' lower QoL outcome and living in the North of Sweden. There were also significant associations between fathers' lower QoL outcome and having a child younger than 13 years of age and mothers' lower QoL outcome and having a child with severe asthma. Although the result shows that a child's asthma did not influence the parents' QoL to a greater degree, it is still important for healthcare workers to help these parents to sustain and improve their well-being. CONCLUSIONS: The fact that they just evaluated their QoL during the preceding week only, and did so at the time when their children were being treated with asthma medication, might have influenced the results in a positive direction.
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20. |
- Dalheim-Englund, Ann-Charlotte
(author)
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Skydda och frigöra : en studie av föräldrar till barn med astma och av professionella vårdare
- 2005
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Doctoral thesis (other academic/artistic)abstract
- Aim: The overall aim of this thesis is, from the point of view of parents of a child with asthma, to describe meanings of being a parent, parents’ quality of life, and to describe how family relations are influenced by their child’s disease. The aim is also to increase the understanding of what strategies professional caregivers use in their work with teenagers suffering from asthma. Methods: Informants in the three qualitative studies were 29 parents (17 mothers and 12 fathers) of children with asthma and 7 professional caregivers. Informants in a quantitative quality of life study were 371 parents. The data collections were undertaken by means of interviews, observations and a questionnaire. The data was analysed by means of a phenomenological-hermeneutic method, grounded theory and statistics. Results: A meaning of being a parent of a child with asthma is to live a strenuous life and to fear that the child might die during a severe asthma attack. The parents’ actions involve both protecting and liberating and their feelings involve sadness as well as acceptance. Mostly the mothers act in a protecting manner and express feelings of sadness. The fathers mostly act in a liberating manner and express feelings of acceptance. The core concern in families of a child with asthma was found to be disease-engendered uncertainty. The mothers describe that feelings of uncertainty always are present owing to the unpredictability of the disease. These feelings make the mothers more or less available for family members. For the child with asthma the mothers’ experience that they are always available. Thus, control and tight bonds characterize the mother-child relationships. The mothers’ constant availability for the child with asthma is experienced to lead to a decreased availability for other family members and theses relationships are characterised by feelings of forsakenness and lack of understanding. However, when parents of children with asthma estimate their quality of life by a questionnaire, they estimate it as comparatively high. In the same family the parents scoring of separate items was to a large extent similar. The result also shows that professional caregivers’ central concern is to assist teenagers with asthma to conquer life. This gives rise to five strategies: showing respect, being at hand, promoting personal sense of responsibility, promoting exceeding boundaries, and promoting reflections. In professional caregivers’ attempt to assist teenagers to conquer life some differences are seen in the way they support boys and girls. Conclusion: One conclusion drawn from this thesis is that being a parent of a child with asthma involves feelings of uncertainty. In meeting the parents in question, caregivers should reflect upon these feelings and consider how the parents could be assisted. As mothers and fathers describe different attitudes in relation to the care of the child, it is also important to reflect upon how professional caregivers can assist the balance between the mothers’ protecting and the fathers’ liberating attitudes. It is also important for professional caregivers to reflect upon how they meet teenage girls and boys with asthma respectively, and to take their needs and understanding of the situation into consideration.
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21. |
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22. |
- Edvardsson, David, 1973-
(author)
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Atmosphere in care settings : Towards a broader understanding of the phenomenon
- 2005
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of the study is to understand and describe the phenomenon ‘atmosphere in care settings’ as experienced by patients, significant others and health care staff. The study consists of four papers, each of which illuminates various aspects of the phenomenon. Data consisted of observations and interviews with patients, significant others and staff (n=126) within a hospice, a geriatric, a medical and an oncology setting, and community care settings for older people. Narrative analysis, grounded theory, and phenomenological hermeneutics were used in a triangular fashion to analyse the data. The findings illuminate the phenomenon ‘atmosphere in care settings’ as being constituted by two interacting and interwoven dimensions: the physical environment and people’s doing and being in the environment. The physical environment is the first dimension, and five aspects were illuminated, namely the physical environment as a symbol; as containing symbols; as influencing interaction; as facilitating a shift of focus from oneself to the environment, and; as containing scents and sounds influencing experiences of at-homeness or alienation. People’s doing and being in the environment is the other dimension, and five aspects were illuminated, namely the experience (or absence of experience) of a welcoming; of seeing and being seen; of a willingness to serve; of a calm pace; and of safety. It was understood that people’s doing and being influences experiences of the physical environment and that the physical environment influences experiences of people’s doing and being. The comprehensive understanding illuminated that the phenomenon is not merely subtle qualities of the place for care, but an active part of care. Both the physical environment and peoples doing and being conveys messages of caring and uncaring. The atmosphere of a care setting can at best support experiences of at-homeness in relation to oneself, others and the surrounding world.
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23. |
- Edvardsson, David, et al.
(author)
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Caring or uncaring - meanings of being in an oncology environment.
- 2006
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In: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 55:2, s. 188-197
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Journal article (peer-reviewed)abstract
- AIM: This paper reports a study illuminating meanings of being in the physical environment of an oncology centre as narrated by patients, significant others and staff. BACKGROUND: The physical environment of hospitals can convey different messages. For example, landscape pictures, plants and comfortable chairs can convey positive messages, while sparsely decorated and run-down environments can convey negative values. Traditional healthcare environments may be experienced as unfamiliar, strange and alienating, fostering feelings of stress and vulnerability. The majority of research on care environments has employed experimental designs to test different environmental variables, for example sound, colour and architecture, in relation to patient outcomes such as recovery, pain and blood pressure. There is, however, little research-based understanding of the meanings of being in these environments. METHODS: A phenomenological hermeneutic approach was applied to analyse 17 interviews with patients, significant others and staff carried out during the spring of 2004 at an oncology centre in Sweden. FINDINGS: The physical environment was found to influence experiences of care in four ways: first, by being a symbol expressing messages of death and dying, danger, shame and stigma, less social value and worth; second by containing symbols expressing messages of caring and uncaring, life and death; third, by influencing interaction and the balance between being involved and finding privacy; and fourth, by containing objects that could facilitate a shift of focus away from the self: being able to escape the world of cancer, and finding light in the midst of darkness. The comprehensive understanding illuminates the physical environment as not merely a place for caring, but as an important part of caring that needs to be accounted for in nursing care. CONCLUSION: To promote well-being among patients, we need to ask ourselves if the environment imposes rather than eases suffering. Our findings also suggest the importance of not limiting our conceptions of nursing to nurse-patient relationships, but of using the therapeutic potential of the total environment in nursing care.
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24. |
- Edvardsson, David, et al.
(author)
-
Construction and psychometric evaluation of the Swedish language person-centred climate questionnaire : staff version
- 2009
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In: Journal of Nursing Management. - : Hindawi Limited. - 0966-0429 .- 1365-2834. ; 17:7, s. 790-795
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Journal article (peer-reviewed)abstract
- AIM: The aim of the study was to construct and evaluate psychometric properties of the Swedish language Person-centred Climate Questionnaire - staff version. BACKGROUND: Person-centred care is often quoted but ill defined, and the literature warrants the development of valid and reliable measurement tools. METHODS: During 2006, a questionnaire was constructed and distributed to a sample of Swedish hospital staff (n = 600). Questionnaire data was subjected to item analysis and reduction. Psychometrical properties of the questionnaire were evaluated. RESULTS: The 14-item Person-centred Climate Questionnaire showed satisfactory psychometric properties. Measures of validity were good, internal consistency was high, Cronbach's alpha was satisfactory for the total scale (0.88) and test-retest reliability was adequate. CONCLUSION: The results indicate that the staff Person-centred Climate Questionnaire is a valid and reliable tool for assessing staff perceptions of the person centredness of hospital environments. IMPLICATIONS FOR NURSING MANAGEMENT: This instrument makes it possible to study the degree of person-centredness in relation to different organizational systems, environments, staff groups and managerial styles. In addition, staff variables such as turnover rates, health outcomes and efficacy can be related to staff perceived person centredness of the organization.
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25. |
- Edvardsson, David, et al.
(author)
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Forecasting the ward climate : a study from a dementia care unit
- 2012
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 21:7-8, s. 1136-1144
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Journal article (peer-reviewed)abstract
- Aims and objectives. This article present findings from a study aiming to explore the psychosocial climate and its influence on the well-being of people with dementia in a psycho-geriatric hospital unit. Background. Environmental influence in dementia is well explored in relation to the physical environment; however, few studies have explored the psychosocial environment and its influence on well-being. Design. The study had a grounded theory design. Methods. Participant observations were conducted in a psycho-geriatric ward for assessment and treatment of people with dementia in Sweden (n = 36 hours). Data were collected and analysed in a dialectical fashion using the principles of grounded theory methodology. Results. The basic social process that best accounted for the variation in the psychosocial climate and well-being of patients at the unit was 'staff presence or absence', conceptualised as the core category. Three categories emerged in relation to the core category; 'sharing place and moment', 'sharing place but not moment' and 'sharing neither place nor moment'. Conclusions. Staff were catalysts for the psychosocial climate and when being present and engaged they could create a climate interpreted as at-homeness which supported patient well-being. When being absent, the climate quickly became anxious and this facilitated patient ill-being. To provide quality care for people with dementia staff need to be aware of their role in setting the emotional tone of the psychosocial climate and also that this emotional tone significantly influences patient well-being. Relevance to clinical practice. The findings are clinically relevant and can be operationalised and applied in clinical practice. Awareness of the intimate connection between staff presence and absence, the psychosocial climate and patient well-being highlights an ethical responsibility to question: routines that promote staff absence; a culture of merely 'doing for'; and nursing tasks which involve a minimum of staff-patient interaction. The findings have implications for managers as well as for clinical staff.
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26. |
- Edvardsson, David, et al.
(author)
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Meanings of giving touch in the care of older patients: becoming a valuable person and professional
- 2003
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 12:4, s. 601-609
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Journal article (peer-reviewed)abstract
- Touch is central to nursing and health care workers frequently touch their patients, consciously or unconsciously in their interactions with them. Most literature has studied touch from a patient perspective, thus inquiry about professionals' experiences are rare. The aim of this study was to illuminate meanings of giving touch in nursing care of older patients. To understand the meaning of lived experiences of giving touch in care of older patients, interviews with 12 health care professionals in northern Sweden were analysed using a phenomenological-hermeneutic approach influenced by the philosophy of Ricoeur. The findings show that giving touch in the care of older patients is a transforming experience, where one suddenly perceives oneself as both a valuable person and professional who no longer powerlessly confronts patients' haunted and disrupted bodies, but who, by means of touch, has gained power to ease this suffering. The experience also transforms the way one regards older patients. Instead of seeing a severely demanding patient suffering from dementia and/or pain, one is able to see the person behind the disease as a human being, like oneself. A relationship described as calm, friendly and humane is created between caregiver and patient when giving touch, a relationship that transcends the moment of touch and influences one's way of caring. This understanding is presented using the theoretical framework of the philosophy of Marcel. Giving touch has the power to shed new light on health care professionals' experiences of caring for older patients suffering from dementia and/or pain, giving them the power to be a valuable person and professional.
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27. |
- Edvardsson, David, et al.
(author)
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Swedish language Person-centred Climate Questionnaire - patient version : construction and psychometric evaluation
- 2008
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In: Journal of Advanced Nursing. - Malden : Wiley-Blackwell. - 0309-2402 .- 1365-2648. ; 63:3, s. 302-309
-
Journal article (peer-reviewed)abstract
- AIM: This paper is a report of a study to construct and evaluate psychometric properties of the Swedish language patient version Person-centred Climate Questionnaire.BACKGROUND: Person-centred care is widely described as a preferred model of care as it uses the individual person's perspective as point of departure. However, the concept is elusive and lacks definition and a means of measurement.METHOD: A preliminary item pool generated from qualitative studies was distributed to a sample of hospital patients (n = 544) and subjected to item analysis and reduction using exploratory and confirmatory factor analysis. The psychometrical properties of the final questionnaire were evaluated using statistical estimates of validity and reliability.RESULTS: The final 17-item questionnaire consists of three factors explaining 65.1% of the total variance in data, and shows satisfactory goodness-of-fit in confirmative factor analyses. The factors were labelled safety, everydayness and hospitality. Content and construct validity was estimated as satisfactory by Delphi assessment, factor and item analysis. Cronbach's alpha was satisfactory for the total scale (0.93), and also for the three subscales: safety 0.94, everydayness 0.82 and generosity 0.64.CONCLUSION: The Person-centred Climate Questionnaire is a valid and reliable contribution for assessing to what extent the climate of hospital environments is person-centred. The instrument enables descriptions and comparisons of environments, exploration of correlates between person-centredness and patient outcomes and/or measure results of various interventions.
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28. |
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29. |
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30. |
- Edvardsson, David, et al.
(author)
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Ward atmospheres of horror and healing: a comparative analysis of narrative
- 2003
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In: Health. - : SAGE Publications. - 1363-4593 .- 1461-7196. ; 7:4, s. 377-396
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Journal article (peer-reviewed)abstract
- Aspects of a social setting profoundly influence personal experience in the setting. The purpose of our study was to further understand the phenomenon of ward atmosphere through a detailed case study. One narrator describes and contrasts two ward experiences, one where she lost her mother through death, and the other where she became a mother through birthing. Using classic storytelling forms, she develops a long narrative juxtaposing the two settings: one healing, the other horrifying. Close examination of narrative structure and aesthetics of the illness narrative shows how the narrator forges a discourse about the moral life - how healing should occur. Experiences in the two settings continue to have significance in her subjectivity. The research suggests aspects of ward atmosphere that warrant further investigation.
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31. |
- Edvardsson, J David, et al.
(author)
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Sensing an atmosphere of ease : a tentative theory of supportive care settings.
- 2005
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In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 19:4, s. 344-353
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Journal article (peer-reviewed)abstract
- Nightingale saw the art of nursing as providing an environment in which patients were offered the best conditions for nature to act upon them. However, we still have limited research-based understandings of care settings experienced as supportive by patients, significant others and staff. The aim of this study was to construct a theoretical understanding of processes contributing to supportive care settings. The authors used grounded theory design and the constant comparative method to analyse theoretically sampled interview and observational data from three different contexts of care. The tentative theory conceptualizes supportive care settings as sensing an atmosphere of ease, and five categories were recognized: experiencing welcoming; recognizing oneself in the environment; creating and maintaining social relations; experiencing a willingness to serve; and experiencing safety. Having one's expectations of the environment exceeded was a mediating factor in sensing an atmosphere of ease. Sensing an atmosphere of ease facilitated experiences of being able to locate oneself in familiar and safe surroundings; being able to follow one's own rhythm; being seen, acknowledged and cared about; and having possibilities of benefiting from beauty and contacts with others.
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32. |
- Efraimsson, Eva, et al.
(author)
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Discharge planning : "fooling ourselves?"--patient participation in conferences.
- 2004
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 13:5, s. 562-570
-
Journal article (peer-reviewed)abstract
- BACKGROUND: The aim of discharge planning conferences (DPCs) is to co-ordinate resources and to enhance patient involvement in care in connection with relocation from hospital. DPCs can be characterized as institutional conversations, and are often executed as standard procedures, but the scientific basis for the activity is weak. AIMS AND OBJECTIVES: The aim of this study was to illuminate and describe the communication at DPCs. DESIGN: A purposeful and consecutive sample of eight DPCs was collected in which the future care of eight women, aged 70 years or more, was discussed. METHODS: Transcribed video recordings were analysed in two steps. "The initial analysis" aimed at describing the structure and content of the communication. This description constituted the basis for an interpretation, leading to "the focused analysis" aiming at finding evidence for the assumptions made in the interpretation. RESULTS: The result revealed that the participation of patients was very less the DPCs. The decisions had often already been made, and the women were expected to be pleased with the decision; institutional representatives (IRs) frequently justified their actions by referring to bureaucratic praxis. CONCLUSIONS: The women were both encouraged and excluded from participation by the IRs. This dichotomy occurred because the IRs, as professionals, struggled to simultaneously realize their caring mission and their obligation to enforce the values and rules of the institution, i.e. efficiency and rationality. Thus, IRs and patients were equally imprisoned within the institutional system. RELEVANCE TO CLINICAL RESEARCH: This result illustrates how conflicting paradigms are imbedded and reproduced by healthcare professionals in their communicative praxis. Awareness of this is a prerequisite for improvements in working procedures congruent with a caring paradigm that support patient participation.
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33. |
- Efraimsson, Eva, et al.
(author)
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Expressions of power and powerlessness in discharge planning: a case study of an older woman on her way home
- 2003
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In: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 12:5, s. 717-716
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Journal article (peer-reviewed)abstract
- The aim of this case study was to illuminate and describe the phenomenon of power as it appeared in a discharge planning conference. The patient was an older woman who needed long-term care as a result of stroke and heart failure. Data comprised transcriptions of a video-recorded discharge planning conference and two audio-recorded interviews focusing on the patient's experience of the discharge planning conference. The findings reveal that the content of the discharge planning conference focused on the patient's medical state and routine administrative protocols. Analysis of the participants' activities, strategies and attitudes during the conference indicate that the professional carers dominated the conversation. Analysis further reveals that the patient experienced a feeling of powerlessness and of being treated as an object. The findings are interpreted and discussed based on the concepts of 'institutional frame' and 'client's frame', derived from Agar's theory of institutional discourse.
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34. |
- Efraimsson, Eva, et al.
(author)
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How to get one's voice heard : the problems of the discharge planning conference.
- 2006
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In: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 53:6, s. 646-655
-
Journal article (peer-reviewed)abstract
- AIMS: This paper reports a study describing how patients, relatives and healthcare professionals dealt with the variety of problems and responsibilities that occur in discharge planning conferences and especially how they managed to do this given the institutional frame that surrounded the meeting. BACKGROUND: In Sweden, the aim of a discharge planning conference is to co-ordinate social and healthcare resources as patients are discharged from hospitals. Patients, relatives and hospital staff, along with healthcare professionals responsible for outpatient care, assemble to achieve an individual care plan. One of the explicit principles informing the discharge planning conference is to increase patients' influence on decision-making. However, research points at shortcomings in this respect. METHOD: A discourse analysis was conducted using transcriptions of eight video-recorded discharge planning conferences. The selected patients were eight older women expected to be discharged from hospital. Other participants were staff nurses, social workers and occasionally relatives, an occupational therapist, district nurse or home care aide. FINDINGS: Participants adopted different roles as persons/patients, relative/next of kin and healthcare professionals/institutional representatives during the discharge planning conference, which they simultaneously struggled to act upon. The findings are presented under the categories 'Clashing roles and perspectives' and 'Facing the institutional frame'. CONCLUSIONS: The performance of the discharge planning conference in its present form interferes with a caring perspective that protects patients' integrity and gives prominence to their life worlds. Moreover, it does not satisfy patients' and relatives' right to expect proceedings that enhance their possibility to express their personal wishes in a dignified manner.
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35. |
- Efraimsson, Eva, et al.
(author)
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"They were talking about me"--elderly women's experiences of taking part in a discharge planning conference.
- 2006
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In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 20:1, s. 68-78
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Journal article (peer-reviewed)abstract
- INTRODUCTION: Discharge planning procedures needs improving to make transition to care settings in the community smooth, safe and secure. Research about discharge planning that involves a patient perspective is limited. The intention of this study was to focus on the patients' (elderly women) experiences of taking part in discharge planning conferences (DPCs) to deepen our understanding of the meaning of facing "the world of the institution" from a life-world perspective. AIM: This study aims at describing elderly women's experience of taking part in a DPC as they are about to be discharged from hospital. METHODOLOGICAL DESIGN: To illuminate the phenomenon from a life-world perspective, an interview study was chosen. Eight follow-up interviews with seven elderly women were carried out. The interviews were analysed using a qualitative content analysis methodology. FINDINGS: The interpretation of data was that the women's future was as in suspense as they got ill or were hit by accidents. The analysis revealed four themes that reflected the women's experiences of taking part in the DPCs: Being affiliated; Being in focus, Standing outside; and finally Being unprepared. STUDY LIMITATIONS AND CONCLUSION: The limitations of the study are related to: selection of participants; participation in the interview was connected to a video recording study; gap in time between participation in the DPC and the interview. The findings are still seen as trustworthy as the experiences expressed by the participating women in data are to be seen as a contribution to an emerging understanding of the meaning of the phenomenon from a life world perspective. The findings make clear that the institutional world easily and without much resistance from the patients transgresses the border of their life worlds. This awakes a need to reconsider how a caring perspective can be established in practice.
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36. |
- Efraimsson, Eva, 1955-
(author)
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Vårdplaneringsmötet. : En studie av det institutionella samtalet mellan äldre kvinnor, närstående och vårdare
- 2005
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis is to describe how elderly women’s encounters with an institutionalised world of health care manifest itself in a discharge planning conference (DPC). The thesis is based on eight video recorded DPCs and follow-up interviews with the women who took part in the conferences. The result of study I, a case study, showed that the woman’s experience of taking part in the DPC was characterised as a feeling of powerlessness. The women’s possibility to have influence on the care planning was small (Study II). Study III revealed that the participants adopted or were assigned to different roles during the DPC. As these roles collided dilemmatic situations occurred. Simultaneously the women and family members struggled to manage the institutional frame that surrounded the meeting by trying to find room within it or by challenging it. Study IV revealed that the women found themselves to be in a vulnerable situation. Their body had failed them, their future was insecure and they felt unprepared as they took part in the DPC. They felt as if they were being affiliated with the other participants in a joint project, as if they were standing outside the event or as if they were in focus for the conversation which. The last was a double edged experience: getting confirmative attention but also being exposed as dependent. Four themes characterise the care that was jointly constructed by all participants during the DPC. These themes are “Care as spirit of community and confirmation”, ”Care as alienation”, ”The incomprehensible care” and “The inflexible and betraitful care”.The result gives rise to questions about the relevance of DPCs in their present shape. Further research and developmental projects requested to achieve dicharge planning conferences that are corresponding better to official caring ideals and the patients needs.
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37. |
- Ekvall Hansson, Eva, et al.
(author)
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Vestibular rehabilitation for persons with stroke and concomitant dizziness : a pilot study
- 2020
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In: Pilot and Feasibility Studies. - : Springer Nature. - 2055-5784. ; 6:1
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Journal article (peer-reviewed)abstract
- Background: Dizziness is common among patients with first time stroke. It affects self-perceived health and is a risk factor for falls. Vestibular rehabilitation (VR) is effective for treating dizziness among various conditions, but the effect of dizziness with origin in the central nervous system is poorly studied.This pilot study of a randomized controlled trial aimed at investigating a vestibular rehabilitation programme among patients with first time stroke and concomitant dizziness. A second aim was to study the feasibility of performing the randomized controlled trial.Methods: The participants were computer generated randomized to either an intervention or a control group. The intervention comprised of four different vestibular rehabilitation exercises, adapted for each patient and usual rehabilitation. The control group received usual rehabilitation without the vestibular rehabilitation exercises. Outcome measures used were The Activities-specific Balance Confidence Scale, the Berg Balance Scale, the Functional Gait Assessment Scale and the EuroQol-5D. Feasibility was studied in terms of recruitment, adherence and retention rates, also as the ability to collect primary and secondary outcomes as well as to find indications of treatment differences.Results: Self-rated health improved for all participants. No other differences between baseline and follow-up were detected neither within nor between groups. Recruitment rate was 23%, adherence to the intervention 90%, retention rate 69% and ability to collect outcome measures 90%. No adverse events occurred.Conclusion: Both the intervention and the control groups improved in self-perceived health. The measures of feasibility were satisfactory in this study, apart from a low recruitment rate.
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38. |
- Fallbjörk, Ulrika, 1967-, et al.
(author)
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A preliminary study into women's experiences of undergoing reconstructive surgery after breast cancer
- 2012
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In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 16:3, s. 220-226
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Journal article (peer-reviewed)abstract
- Breast cancer is the most common type of cancer among women. In Sweden, about 40% of women diagnosed with breast cancer undergo a mastectomy; breast reconstruction (BR) may be an option for these women. However, the experience of undergoing reconstructive surgery appears to be only very scarcely researched, despite its importance in clinical nursing.Aim: The purpose of this study was to explore women's experiences of undergoing breast reconstructive surgery after mastectomy due to breast cancer.Methods: Six women participated in narrative interviews about their experiences of reconstructive surgery, and the interview data were analysed using thematic narrative analysis.Results: All six women were unprepared for the strenuous experience of undergoing a BR. They described the process as difficult and painful, entailing several operations and an unexpectedly long recovery period. They were also unprepared for how arduous it would be, both physically and emotionally. However, getting a BR had been important to all the women. The BR process was captured in four themes: (1) uninformed care; (2) arduous experiences; (3) body alterations; and (4) moving on.Conclusions: Obtaining adequate information and being involved in the decision-making process along the pathway of a BR could help the women to prepare physically and emotionally for the strenuous experiences related to reconstructive surgery.
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39. |
- Fallbjörk, Ulrika, 1967-, et al.
(author)
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Aspects of body image after mastectomy due to breast cancer : a two-year follow up study
- 2013
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In: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 17:3, s. 340-345
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Journal article (peer-reviewed)abstract
- Purpose: This 2-year follow-up study explores aspects of body image after mastectomy due to breast cancer.Materials and Methods: This population-based study included 76 women living in northern Sweden who, during November 2006 to October 2007, underwent mastectomy due to breast cancer. The women completed a questionnaire entitled “Life After Mastectomy (LAM)” 10 months after the mastectomy and again 2 years later. We used SPSS version 18.0 for data processing and analysis.Results:The findings indicate that few significant changes in body image had taken place during the 2-year interval between the first and second completion of the questionnaire. An exception was a significant decrease in feelings of sexual attractiveness and comfort during sexual intimacy. At follow-up, 21% of the women had undergone breast reconstruction (BR). They were significantly younger than the women who had not had BR (53 v. 63 years). Besides being younger, no other significant differences could be found between those women who had undergone BR and those who had not. The fact that the decrease in sexual attractiveness and feelings of comfort during sexual intimacy also applied to the subgroup of women who had had BR may therefore be surprising. A better understanding of issues related to breast cancer treatment and sexual function is vital.Conclusion: It is important for health care professionals to be aware of problems related to sexual intimacy and to be prepared not just to provide information about these, but also to reflect on expectations v. reality together with the women.
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40. |
- Fallbjörk, Ulrika, 1967-, et al.
(author)
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Differences between women who have and have not undergone breast reconstruction after mastectomy due to breast cancer
- 2010
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In: Acta Oncologica. - : Taylor & Francis. - 0284-186X .- 1651-226X. ; 49:2, s. 174-179
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Journal article (peer-reviewed)abstract
- Aim: This study compares potential differences between women with breast cancer who after mastectomy had undergone breast reconstruction with those who had not. Material and methods: All women (N=149) in the northern medical region of Sweden who had undergone mastectomy in 2003 received a self-reported questionnaire entitled “Life After Mastectomy (LAM)” that included standardized measures of sociodemographic, decision-making process, breast reconstruction (BR) yes or no, sexuality, and body image. SPSS was used for data processing. Results: In total 85% of the women returned the questionnaire and of these 25% had undergone BR. In accordance with previous studies, we found that the mean age of the women in the BR group was significantly lower (52 vs. 64 years), they had a higher education, and a higher proportion were employed, influenced by the physician's opinion regarding BR, sexually active, and rated a negative impact concerning the factors attractiveness and body disclosure. A multiple regression analysis, however, showed that the choice to undergo breast reconstruction or not was only independently associated with age, feeling of attractiveness and sexual interest. Discussion: Age explained most differences found between the two groups. When researchers try to identify what differentiates the groups of women who undergo reconstruction between those who do not undergo reconstruction after mastectomy, it is thus necessary to take into consideration that the meanings of mastectomy, body image, attractiveness and similar variables may vary due to the phase of a woman's life. In conclusion, considering the impact of age is of paramount importance in future studies for our understanding of women's experiences.
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41. |
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42. |
- Fallbjörk, Ulrika, 1967-, et al.
(author)
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From "no big deal" to "losing oneself" : different meanings of mastectomy
- 2012
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In: Cancer Nursing. - Philadelphia : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 35:5, s. E41-E48
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Journal article (peer-reviewed)abstract
- Background: Because of early detection and advanced treatment options, more women with breast cancer survive after mastectomy and thus have to face the choice of living with or without a reconstructed breast for many years to come. Objective: This article investigates these women’s narratives about the impact of mastectomy on their lives, as well as their reflections on breast reconstruction.Methods: Fifteen women were strategically chosen from a previous population-based study on mastectomy. They were contacted for further exploration in thematic narrative-inspired interviews 4.5 years after mastectomy.Results: Three types of storylines were identified. In the first storyline, the mastectomy was described as ‘‘no big deal’’; losing a breast did not disturb the women’s view of themselves as women, and breast reconstruction was not even worth consideration. In the second storyline, the women described the mastectomy as shattering their identity. Losing a breast implied losing oneself as a sexual being, a woman, and a person. The third storyline fell in between the other two; the sense of femininity was wounded, but not to the extent that they felt lost as women.Conclusion: Our findings suggest that the experience of mastectomy due to breast cancer is very much individual and contextual. Losing a breast may be of minor or major importance.Implications for Practice: Healthcare practitioners should be attentive to how the women themselves experience the personal meaning of losing a breast and guard against vague preconceptions based on the breast-sexuality-femininity discourse and its connection to what the patient needs.
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43. |
- Fallbjörk, Ulrika, 1967-
(author)
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I spåren av bröstcancer : att leva med eller utan ett rekonstruerat bröst efter mastektomi
- 2012
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Doctoral thesis (other academic/artistic)abstract
- Bakgrund: I Sverige är bröstcancer den vanligaste formen av kvinnlig cancer och utgör nära en tredjedel av kvinnlig cancer. I behandlingen av bröstcancer har kirurgi en betydande roll. Nära hälften av kvinnorna genomgår mastektomi, men det finns en stor variation inom landet. Att förlora ett bröst efter mastektomi har såväl en kroppslig som psykologisk innebörd. Avhandlingen omfattar fyra delstudier som beskriver detta på olika sätt.Syfte: Det övergripande syftet med avhandlingen är att studera betydelsen av att förlora ett bröst på grund av cancersjukdom samt motiv och beslutsprocess i ställningstagande till att leva med eller utan ett rekonstruerat bröst.Metod: Avhandlingen baseras på två populationer av kvinnor boende i norra Sverige som genomgått mastektomi på grund av bröstcancer: de kvinnor som genomgått mastektomi under 2003 (delstudie I–III) samt de kvinnor som genomgått mastektomi mellan oktober 2006 och september 2007 (delstudie IV). Dessa kvinnor identifierades via det regionala cancerregistret, onkologiskt centrum, Norrlands universitetssjukhus. Statistiska analyser genomfördes i delstudie I och IV och tematisk narrativ analys har tillämpats i delstudie II och III.Resultat: Delstudie I: År 2007 skickades ett nykonstruerat självskattningsformulär ”Life After Mastectomy” (LAM) ut till 149 kvinnor varav 85% (n=126) besvarades. Av dessa kvinnor hade 25% genomgått bröstrekonstruktion. Resultaten av en multipel regressionsanalys visade att bröstrekonstruktion var signifikant relaterat till lägre ålder, känsla av att vara attraktiv och sexuellt intresse. För att få en djupare och mer nyanserad förståelse kring innebörder av att förlora ett bröst efter mastektomi och motiv till att avstå från eller genomgå bröstrekonstruktion gjordes ett strategiskt urval av 15 kvinnor från delstudie I som deltog i en forskningsintervju(delstudie II). I den tematiska narrativa analysen identifierades tre typberättelser. I den första typberättelsen beskrevs mastektomin som ”no big deal” och att genomgå en bröstrekonstruktion var inte ens värt att överväga. I den andra typberättelsen beskrevs mastektomin som ”att förlora sig själv” och en bröstrekonstruktion beskrevs som ett sätt att återställa sig som person, kvinna och sexuell varelse. Den tredje typberättelsen intog en position mellan ”no big deal” och ”att förlora sig själv” och en bröstrekonstruktion beskrevs som ett välkommet erbjudande vilket gjorde det enklare att se och känna sig som kvinna. I delstudie III undersöktes sex kvinnors erfarenheter av att genomgå bröstrekonstruktion. Samtliga kvinnor var oförberedda på den krävande procedur som de genomgick. De beskrev processen som svår och smärtsam med upprepade operationer och en oväntat lång konvalescenstid. Även om kvinnorna var oförberedda på hur tufft det skulle komma att bli både fysiskt och emotionellt beskrevs bröstrekonstruktionen som betydelsefull för dem. Delstudie IV: I denna uppföljningsstudie inkluderades kvinnorna 10 månader efter mastektomin då självskattningsformuläret LAM skickades ut. Datainsamlingen med samma formulär upprepades två år senare (tre år efter mastektomin). Kvinnornas (n=76) känsla av attraktivitet och kvinnlighet hade inte förändrats mellan de två mättillfällena, med undantag för vissa aspekter av sexualitet som hade försämrats. Vid uppföljningen hade 21% av kvinnorna genomgått bröstrekonstruktion och dessa kvinnor var yngre. I övrigt kundeinga signifikanta skillnader ses mellan de kvinnor som genomgått respektiveej genomgått bröstrekonstruktion.Slutsats: Denna avhandling ger en inblick i betydelsen av att förlora ett bröst efter mastektomi. Att förlora ett bröst efter mastektomi kan vara av mindre eller större betydelse. För de kvinnor som upplevde bröstförlusten som en förlust av sig själva, kom en bröstrekonstruktion att betraktas som en livsnödvändighet (delstudie II). De flesta av kvinnorna 75% i delstudie I och 79% i delstudie IV genomgick inte någon bröstrekonstruktion. De kvinnor som genomgick rekonstruktiv kirurgi beskrev proceduren som svår fysiskt och emotionellt, men trots detta sågs den som viktig för dem (delstudie III). Vid uppföljningen i delstudie IV, var kvinnornas upplevelse av attraktivitet och kvinnlighet oförändrade, men upplevelsen av att känna sig bekväm vid sexuell intimitet utvecklades negativt. Detta var oberoende av om kvinnan genomgått bröstrekonstruktion eller inte, vilket kan ses som överraskande. Det är viktigt att som sjukvårdpersonal uppmärksamma hur den enskilda kvinnan själv upplever betydelsen av att ha förlorat ett bröst för att inte låta sig styras av vaga schabloner kring relationen bröst–sexualitet–kvinnlighet.
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44. |
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45. |
- Hajdarevic, Senada, 1970-, et al.
(author)
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Awareness of sunburn in childhood, use of sunbeds and change of moles in Denmark, Northern Ireland, Norway and Sweden
- 2016
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In: European Journal of Public Health. - : Oxford University Press. - 1101-1262 .- 1464-360X. ; 26:1, s. 29-35
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Journal article (peer-reviewed)abstract
- BACKGROUND: Malignant melanoma (MM) is increasing rapidly in Northern Europe. To reduce incidence and mortality through earlier diagnosis, public awareness of MM is important. Thus, we aim to examine awareness of risk factors and a symptom of MM, and how awareness varies by country and socio-demographic factors in Denmark, Northern Ireland (NI), Norway and Sweden.METHODS: Population-based telephone interviews using the 'Awareness and Beliefs about Cancer' measure were conducted in 2011 among 8355 adults ≥50 years as part of the International Cancer Benchmarking Partnership Module 2. Prevalence ratios (PRs) with 95% confidence intervals were calculated.RESULTS: In these four countries, lowest awareness was found for 'sunburn in childhood' (63%), whereas awareness was high for 'use of sunbeds' (91%) and 'mole change' (97%). Lack of awareness of 'sunburn in childhood' was more prevalent among respondents from Norway [PR = 1.38 (1.28-1.48)] but less prevalent among respondents from Northern Ireland (NI) [PR = 0.78 (0.72-0.85)] and Sweden [PR = 0.86 (0.79-0.93)] compared with respondents from Denmark. Lack of awareness of 'use of sunbeds' was more prevalent among respondents from Norway [PR = 2.99 (2.39-3.74)], Sweden [PR = 1.57 (1.22-2.00)], and NI [PR = 1.65 (1.30-2.10)] compared with respondents form Denmark. Being a man, age ≥70, living alone, and having lower education, were each independently associated with lack of MM-awareness.CONCLUSIONS: The results indicate relatively low awareness of 'sunburn in childhood' as a risk factor for MM, and important disparities in MM-awareness across countries and socio-demographic groups. Improved and more directed initiatives to enhance public MM-awareness, particularly about 'sunburn in childhood', are needed.
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46. |
- Hajdarevic, Senada, et al.
(author)
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Kända och okända riskfaktorer för cancer bland svenskar
- 2013
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In: Onkologi i Sverige. - Gustavsberg : Pharma Industry Publishing AB. - 1653-1582. ; :5, s. 36-43
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Journal article (other academic/artistic)abstract
- Sammanfattningsvis identifierades lägre medvetenhet om riskfaktorer för cancer främst bland dem med lägre utbildning och bland dem i åldersgruppen 50+. Skillnader identifierades även mellan män och kvinnor. Hittills genomförda insatser med syfte att öka kunskapen om PV verkar otillräckliga(20) och behöver framförallt riktas mot män och grupper med lägre utbildning vilket också bekräftas av andra studier.Vissa livsstilsrelaterade riskfaktorer för cancer som alkoholkonsumtion, att äta rött- och förbehandlat kött, lågt intag av frukt och grönsaker, och låg fysisk aktivitet var mindre kända hos allmänheten. Eftersom detta är faktorer som den enskilda individen skulle kunna påverka utgör de goda kandidater för preventionskampanjer.En sammanställning av cancerpreventionsåtgärder i Sverige och deras effekt saknas och vi efterlyser en sådan. Informationskampanjer höjer oftast den generella kunskapen i samhället men effekten kan vara kortvarig och den självuppfattade risken att drabbas av cancer kan förbli låg.Våra resultat kan ge en vägledning för att bättre anpassa och rikta information för att nå lika riskgrupper och höja medvetenhet om cancer.
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47. |
- Hajdarevic, Senada, et al.
(author)
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Qualitative cross-country comparison of whether, when and how people diagnosed with lung cancer talk about cigarette smoking in narrative interviews
- 2018
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In: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 8:11
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Journal article (peer-reviewed)abstract
- OBJECTIVES: To compare and examine whether, when and how patients with lung cancer in three countries, with different survival rates, talk about cigarette smoking and its relationship with help-seeking.DESIGN: A qualitative cross-country comparison with analysis of narrative interviews.SETTING: Participants in Sweden, Denmark and England were interviewed during 2015-2016. Interviews, using a narrative approach, were conducted in participants' home by trained and experienced qualitative researchers.PARTICIPANTS: Seventy-two men and women diagnosed with lung cancer were interviewed within 6 months of their diagnosis.RESULTS: The English participants, regardless of their own smoking status, typically raised the topic of smoking early in their interviews. Smoking was mentioned in relation to symptom appraisal and interactions with others, including health professionals. Participants in all three countries interpreted their symptoms in relation to their smoking status, but in Sweden (unlike England) there was no suggestion that this deterred them from seeking care. English participants, but not Swedish or Danish, recounted reluctance to consult healthcare professionals with their symptoms while they were still smoking, some gave up shortly before consulting. Some English patients described defensive strategies to challenge stigma or pre-empt other people's assumptions about their culpability for the disease. A quarter of the Danish and 40% of the Swedish participants did not raise the topic of smoking at any point in their interview.CONCLUSION: The causal relationship between smoking and lung cancer is well known in all three countries, yet this comparative analysis suggests that the links between a sense of responsibility, stigma and reluctance to consult are not inevitable. These findings help illuminate why English patients with lung cancer tend to be diagnosed at a later stage than their Swedish counterparts.
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48. |
- Hajdarevic, Senada, et al.
(author)
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You Need to Know More to Understand My Scoring on the Survey : Free-Text Comments as Part of a PROM-Survey of Men with Prostate Cancer
- 2016
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In: Open Journal of Nursing. - : Scientific Research Publishing, Inc.. - 2162-5336 .- 2162-5344. ; 6:5, s. 365-375
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Journal article (peer-reviewed)abstract
- Prostate cancer and its treatment have long-term implications for men's lives. We aimed to describe the content, extent, and frequency of written comments to the open-ended question, "Further comments?" in the patient-reported outcome measures questionnaire. During the study period, 897 men participated; 372 wrote 747 free-text comments in the questionnaire. These comments were analysed using qualitative content analysis and were grouped into four categories: 1) prostate cancer's influence on health; 2) clarifications of answers to the survey; 3) descriptions of well-being despite the cancer; and 4) experiences of care and the need for contact with health care. The distribution of the comments shifted over time. The open-ended question not only allowed the participants to explain their other responses and describe important aspects of their lives during and after treatment, something not normally covered by a questionnaire, but it also indicated their experiences of health care services along the patients' PC-trajectory. This further raises the issue of including an open-ended item in a forced-choice survey into the ethical realm to ensure that proper care is taken of participants’ answers and thoughts.
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49. |
- Hajdarevic, Senada, et al.
(author)
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You never know when your last day will come and your trip will be over - Existential expressions from a melanoma diagnosis.
- 2014
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In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:4, s. 355-361
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Journal article (peer-reviewed)abstract
- AIM: The aim of this study was to further explore expressions of existential experiences by patients diagnosed with malignant melanoma (MM).METHOD: Semi-structured interviews were performed consecutively after diagnosis among 30 patients with MM. The methodological approach was inspired by Gadamer's hermeneutic philosophy.RESULTS: The analysis of expressions of existential experiences after having been diagnosed with malignant melanoma revealed that it is an existential process that people go through, beginning with feelings of suddenly becoming groundless at the time of the diagnosis, including being empty and in a vacuum, being in chaos and uncertainty and being confronted with one's own death. Next theme searching for solid ground included striving to understand what lies ahead, striving to find a balance in life - fighting, hoping, going on living and striving to prioritize family. The last theme creating islands of solid ground when living with cancer included understanding what is meaningful in life, living in the moment - seizing the day and keeping watch on the body.CONCLUSION: On being diagnosed with malignant melanoma, people go through a process where many questions emerge, including an existential turmoil, which health professionals should be aware of to provide these patients with sufficient support.
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50. |
- Hedestig, Oliver, et al.
(author)
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Meanings of prostate-specific antigen testing as narrated by men with localized prostate cancer after primary treatment
- 2008
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In: Scandinavian Journal of Urology and Nephrology. - Stockholm : Taylor & Francis. - 0036-5599 .- 1651-2065. ; 42:2, s. 101-109
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Journal article (peer-reviewed)abstract
- Objective: To illuminate the meanings of prostate-specific antigen (PSA) testing as narrated by men with localized prostate cancer (LPC) after primary treatment. Material and methods: Fifteen men were interviewed in their homes. The narrative interview text was analyzed using a phenomenological hermeneutic method inspired by the philosophy of Paul Ricoeur. Results: Life after treatment for LPC means feeling unsafe because of being affected by a life-threatening and unpredictable disease, characterized by a lack of early signs of progression. In this situation, PSA testing is ascribed as providing a sense of control to enable one to achieve a feeling of safety. Thus one meaning of PSA testing is receiving a message about the status of the body; another is a tense waiting related to fear of the results. A low, stable PSA value is interpreted as a sense of being safe based on confidence in the PSA tests and a sense of having control over the LPC via regular PSA testing. A rising value of the PSA blood test is understood as an indication of progression of the disease, but confidence in PSA testing also means that when the PSA value rises there is a sense of catching the cancer in good time. Conclusions: The comprehensive understanding of the meaning of PSA testing can be understood in terms of a lifeline to cling to when wondering whether the cancer is still in progress in the body or whether the treatment has been curative. This lifeline creates a feeling of security in a post-treatment life situation which is experienced as being unsafe.
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