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1.	Adlitzer, Helena, et al. (author) Palliativ vård i livets slutskede : Nationellt vårdprogram 2016 Reports (other academic/artistic)
2.	Brandberg, M, et al. (author) A comparative study of simple and interference reaction times in men and women 2018 In: Conference program The 13th Nordic Meeting in Neuropsychology Stockholm, 2018. Conference paper (other academic/artistic)abstract Introduction: studies on reaction time (RT) indicate faster reactions for men than women. However, when comparing samples across decades, this difference seems to decrease. The aim of this study was to explore reaction times in a large contemporary sample of adult males and females (age range = 15-82). Methods: simple reaction time and interference reaction time (a go/no go reaction task) were measured with the Vienna Reaction Apparatus (Wiener Reaktionstest, Schuhfried), RT, version S1 and S2 for simple reaction time and version S3 and S4 for interference reaction time. Results Men responded faster on the interference reaction task, S3 (M=441,57, SD=80,86) than women (M=461,53, SD=91,53). This difference was significant,t(3,7) = p<0,001 and represent a small sized effect, d= .21. There were no significant differences regarding simple reaction time (S1 and S2) or on the other interference task (S4). In regards to intraindividual variability there was a significant difference, t(3.1), p=.002, d=.21, with less variability in males (M=65.99) as compared to females (M=70,45) on S3. Conclusions: when comparing groups, men performed slightly faster on one of the interference tasks. However, there were no significant differences on the other measures. This result is consistent with previous studies indicating a decrease in differences on reaction times, comparing men and women. Grant support: Skaraborg Research and Development Council, Research Fund at Skaraborg Hospital and The Swedish Stroke Association.
3.	Brandberg, Martin, 1972, et al. (author) A comparative study on simple and interference reaction times in women and men. 2018 In: Conference program, The 13th Nordic Meeting in Neuropsychology, Stockholm, 2018. Conference paper (other academic/artistic)abstract Introduction: studies on reaction time (RT) indicate faster reactions for men than women. However, when comparing samples across decades, this difference seems to decrease. The aim of this study was to explore reaction times in a large contemporary sample of adult males and females (age range = 15-82). Methods: Simple reaction time and interference reaction time (a go/no go reaction task) were measured with the Vienna Reaction Apparatus (Wiener Reaktionstest, Schuhfried), RT, version S1 and S2 for simple reaction time and version S3 and S4 for interference reaction time. Results: men responded faster on the interference reaction task, S3 (M=441,57, SD=80,86) than women (M=461,53, SD=91,53). This difference was significant, t(3,7) = p<0,001 and represent a small sized effect, d = .21. There were no significant differences regarding simple reaction time (S1 and S2) or on the other interference task (S4). In regards to intraindividual variability there was a significant difference, t(3.1), p =.002, d =.21, with less variability in males (M =65.99) as compared to females (M=70,45) on S3. Conclusions: when comparing groups, men performed slightly faster on one of the interference tasks. However, there were no significant differences on the other measures. This result is consistent with previous studies indicating a decrease in differences on reaction times, comparing men and women.
4.	Britt-Marie, Ljungström, et al. (author) Bottom-up and top-down approaches to understanding oppositional defiant disorder symptoms during early childhood: a mixed method study 2020 In: Child and Adolescent Psychiatry and Mental Health. - : Springer Science and Business Media LLC. - 1753-2000. ; 14:1 Journal article (peer-reviewed)abstract Background Children with clinical levels of conduct problems are at high risk of developing mental health problems such as persistent antisocial behavior or emotional problems in adolescence. Serious conduct problems in childhood also predict poor functioning across other areas of life in early adulthood such as overweight, heavy drinking, social isolation and not in employment or education. It is important to capture those children who are most at risk, early in their development. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is commonly used in clinical settings, to identify children with conduct problems such as oppositional defiant disorder (ODD).This paper presents a cross-sectional study in a clinical setting, and describes behaviors in 3- to 8-year-olds with ODD. Our aim was to investigate whether there were problematic behaviors that were not captured by the diagnosis of ODD, using two different methods: a clinical approach (bottom-up) and the nosology for the diagnosis of ODD (top-down). Method Fifty-seven children with clinical levels of ODD participated in the study. The mothers were interviewed with both open questions and with a semi-structured diagnostic interview K-SADS. The data was analyzed using a mixed method, convergent, parallel qualitative/quantitative (QUAL + QUAN) design. For QUAL analysis qualitative content analysis was used, and for QUAN analysis associations between the two data sets, and ages-groups and gender were compared using Chi-square test. Results In the top-down approach, the ODD criteria helped to identify and separate commonly occurring oppositional behavior from conduct problems, but in the bottom-up approach, the accepted diagnostic criteria did not capture the entire range of problematic behaviors-especially those behaviors that constitute a risk for antisocial behavior. Conclusions The present study shows a gap between the diagnoses of ODD and conduct disorder (CD) in younger children. Antisocial behaviors manifest in preschool and early school years are not always sufficiently alarming to meet the diagnosis of CD, nor are they caught in their entirety by the ODD diagnostic tool. One way to verify suspicion of early antisocial behavior in preschool children would be to specify in the ODD diagnosis if there also is subclinical CD.
5.	Britt-Marie, Ljungström, et al. (author) "Since his birth, I've always been old" the experience of being parents to children displaying disruptive behavior problems: a qualitative study 2020 In: BMC psychology. - : Springer Science and Business Media LLC. - 2050-7283 .- 2050-7283. ; 8 Journal article (peer-reviewed)abstract BACKGROUND: Being parents of children who display disruptive behavior problems (DBP) can pose several challenges. Interventions for children with DBP are primarily outpatient group parent training (PT) programs. The purpose of this study was to explore how parents of children with disruptive behavior problems, diagnosed with oppositional defiant disorder (ODD), describe the difficulties they face in their family and parenting situations. METHODS: Nineteen parents of children aged 3 to 8years who had searched for help and signed up for a parent training program provided by Child and Adolescent Mental Health Service participated in the study. Semi-structured diagnostic interviews and a modified background interview adapted for the purpose of the study were conducted before parents entered the program. All children included in the study met the DSM criteria for ODD. The interviews were audiotaped and transcribed. Thematic analysis was used to examine, identify, and report patterns of meaning in the data. The analysis was conducted inductively using a contextual approach. RESULTS: Parents described their own vulnerability, how they were affected by the parent-child interaction, and the challenges they perceived in their parenting practices. The study contributes to an understanding of the complexity that parents of children with ODD perceive in everyday life. CONCLUSIONS: The parents in the study highlight the need to address parents' own mental health problems, parental alliance, capacity for emotion regulation, perceived helplessness as parents, lack of parental strategies, sense of isolation, and absence of supportive social networks. All these factors could be important when tailoring interventions aimed to help and support parents of children who display DBP, and specifically ODD.
6.	Browall, Maria, et al. (author) Patient-reported stressful events and coping strategies in post-menopausal women with breast cancer 2016 In: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 25:2, s. 324-333 Journal article (peer-reviewed)abstract The objective of this paper was to explore what stressful events post-menopausal women with primary or recurrent breast cancer experience, how bothersome these events were and which coping strategies these women used. Data were collected from 131 patients diagnosed with primary or recurrent breast cancer. The Daily Coping Assessment was used. Thematic analysis was applied to form themes of stressful events. Six types of stressful events were extracted. The most frequently experienced events for women with primary cancer and those with recurrent cancer were distressing bodily symptoms'. The most bothersome event among primary cancer was everyday concerns' and in the recurrent group, distressing psychological reactions'. The most commonly used strategies were acceptance', distraction' and relaxation'. This study shows that women in different parts of the cancer trajectory differ in what they perceive to be stressful events when reporting them in their own words in a diary. The differences have an impact on the subsequent coping strategies they used.
7.	Browall, Maria, et al. (author) Validity and Reliability of the Swedish Version of the Memorial Symptom Assessment Scale (MSAS) : An Instrument for the Evaluation of Symptom Prevalence, Characteristics, and Distress 2013 In: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 46:1, s. 131-141 Journal article (peer-reviewed)
8.	Falk, Hanna, 1977, et al. (author) Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients. 2016 In: Journal of Nursing Scholarship. - : Wiley. - 1527-6546 .- 1547-5069. ; 48:6, s. 569-576 Journal article (peer-reviewed)abstract PURPOSE: To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients.DESIGN: This cross-sectional study analyzed data from 710 inpatients at two large hospitals in Sweden using the Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale. Chart reviews focused on nurses' and physicians' symptom documentation and palliative turning point.METHODS: Descriptive statistics were calculated for all variables and provided summaries about the sample. Patients were grouped according to gender, age, palliative care designation, and symptom documentation. The t test and chi-square test were used to calculate whether symptom distress varied between groups. A two-way analysis of variance was conducted for multiple comparisons to explore the impact of gender and age on mean symptom distress.FINDINGS: Females reported higher levels of symptom distress than did males related to pain, fatigue, and nausea. When comparing symptom distress between males and females with documentation pertaining to symptoms, there were significant differences implying that females had to report higher levels of symptom distress than males in order to have their symptoms documented.CONCLUSIONS: Females need to report higher levels of symptom distress than do males for healthcare professionals to identify and document their symptoms. It can be hypothesized that females are not receiving the same attention and symptom alleviation as men. If so, this highlights a serious inequality in care that requires further exploration.CLINICAL RELEVANCE: Considering that common reasons why people seek health care are troublesome symptoms of illness, and that the clinical and demographic characteristics of inpatients are changing towards more advanced ages with serious illnesses, inadequate symptom assessment and management are a serious threat to the care quality.
9.	Friberg, Febe, 1950, et al. (author) Exploration of dynamics in a complex person-centred intervention process based on health professionals' perspectives 2018 In: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 18:1 Journal article (peer-reviewed)abstract Background: The assessment and evaluation of practical and sustainable development of health care has become a major focus of investigation in health services research. A key challenge for researchers as well as decision-makers in health care is to understand mechanisms influencing how complex interventions work and become embedded in practice, which is significant for both evaluation and later implementation. In this study, we explored nurses' and surgeons' perspectives on performing and participating in a complex multi-centre person-centred intervention process that aimed to support patients diagnosed with colorectal cancer to feel prepared for surgery, discharge and recovery. Method: Data consisted of retrospective interviews with 20 professionals after the intervention, supplemented with prospective conversational data and field notes from workshops and follow-up meetings (n = 51). The data were analysed to construct patterns in line with interpretive description. Results: Although the participants highly valued components of the intervention, the results reveal influencing mechanisms underlying the functioning of the intervention, including multiple objectives, unclear mandates and competing professional logics. The results also reveal variations in processing the intervention focused on differences in using and talking about intervention components. Conclusions: The study indicates there are significant areas of ambiguity in understanding how theory-based complex clinical interventions work and in how interventions are socially constructed and co-created by professionals' experiences, assumptions about own professional practice, contextual conditions and the researchers' intentions. This process evaluation reveals insights into reasons for success or failure and contextual aspects associated with variations in outcomes. Thus, there is a need for further interpretive inquiry, and not only descriptive studies, of the multifaceted characters of complex clinical interventions and how the intervention components are actually shaped in constantly shifting contexts.
10.	Fridh, Isabell, 1954, et al. (author) Extensive human suffering : a point prevalence survey of patients' most distressing concerns during inpatient care 2015 In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 29, s. 444-453 Journal article (peer-reviewed)abstract AIM: To explore patients' most distressing concerns during a hospital stay.BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting.METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension.FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world.CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.
11.	Gaston-Johansson, Fannie, et al. (author) Long-term effect of the self-management comprehensive coping strategy program on quality of life in patients with breast cancer treated with high-dose chemotherapy 2013 In: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 22:3, s. 530-539 Journal article (peer-reviewed)abstract BACKGROUND: This study aims to examine the effectiveness of a self-management multimodal comprehensive coping strategy program (CCSP) on quality of life (QOL) among breast cancer patients 1 year after treatment.METHODS: Patients (n = 110) with stage II, III, or IV breast cancer scheduled to receive high dose chemotherapy and autologous hematopoietic stem cell transplantation were randomized to either CCSP treatment or control group. The CCSP intervention was taught 2 week before hospital admission with reinforcement at specified times during treatment and 3 months after discharge. The CCSP components included educational information, cognitive restructuring, coping skills enhancement, and relaxation with guided imagery. Instruments administered at baseline included the following: Quality of Life Index-Cancer Version (QOLI-CV), State-Trait Anxiety Inventory, Beck Depression Inventory, and Coping Strategies Questionnaire. At 1-year follow-up, patients (n = 73) completed and returned the follow-up QOLI-CV.RESULTS: Patients were mainly ≥40 years of age, married, Caucasian, and diagnosed with advanced breast cancer. A model measuring effectiveness of CCSP on QOL (total and subscale) at 1-year follow-up showed that the CCSP group (n = 38) had significant improvement in overall QOL (p < 0.01), health and functioning (p < 0.05), and socioeconomic (p < 0.05) and psychological/spiritual well-being (p < 0.01) compared with the control group (n = 35). The CCSP patients frequently used the CCSP to manage psychological (51%) and sleep problems (60%).CONCLUSIONS: The CCSP improved QOL for patients at 1-year follow-up. Patients overwhelmingly reported that CCSP was beneficial. The CCSP as an effective coping intervention has potential as a self-management program for breast cancer survivors.
12.	Gustavsson, Susanne, 1966, et al. (author) Experience-based co-design projects in paediatric care processes; Parents’ perceived quality 2014 In: The 17th International Conference, Quality Management and Organizational Development (QMOD), Prague, Czech Republic, 3-5 September, 2014. Conference paper (peer-reviewed)abstract Purpose The purpose of this paper is to examine and describe parents experiences of pediatric care processes and what dimensions of quality that are illuminated as improvement areas when having joint improvement projects with healthcare staff. Design The overall research approach is action research in two experience-based co-design EBCD projects. The data for this paper was collected in open-ended interviews and collaborative reflections with parents and during the improvement project. The interviews were analysed by a qualitative content analysis. Findings This paper shows that parents’ experiences were related to both technical and functional dimensions of quality. Sub dimensions of quality such as interaction, expertise and support were mentioned and illuminated as improvement areas. If patients/relatives are not invited to improvement projects, healthcare staff will miss out on improvement opportunities. Originality Practical examples of parents’ involvement can contribute to learning reflections and strengthen a customer’s view of the patient. It is also contributes to the area of service management in healthcare.
13.	Gustavsson, Susanne, 1966, et al. (author) Using an adapted approach to the Kano model to identify patient needs 2016 In: The TQM Journal. - 1754-2731. ; 28:1 Journal article (peer-reviewed)abstract Purpose – The purpose of this paper is to study how an account of multiple patient roles when using the Kano model in healthcare improvements can support identification of a wide range of patients’ needs. Design/methodology/approach – The study presented in this paper was part of a longitudinal action research study. The empirical material was collected by various methods (interviews, a focus group, participative observations, and a survey) over a two-month period within the Children’s and Women’s Healthcare department in a Swedish hospital. The respondents included the management team, healthcare professionals, patients, and the patients’ partners. Findings – The study shows that incorporating a view of multiple patient roles into application of the Kano model, and using input on customer needs obtained from patients, relatives, and healthcare professionals, helps to identify a wide range of patients’ needs. Originality/value – The view on patients within healthcare is being transformed from one based on servility to that of patients as customers. This paper elaborates on a hands-on way of applying the Kano model based on a view of multiple patient roles as a means to support this new patient view. The application builds on input from various groups (such as patients and healthcare professionals), and, by using input from various stakeholders. This approach appears to overcome a gap, identified in earlier research, of either relying solely on patients, or solely on healthcare professionals, when identifying patients’ need. Rather input from several groups – patients, relatives, and professionals – are suggested to be used in combination.
14.	Haakanson, Cecilia, et al. (author) Preparedness for Colorectal Cancer Surgery and Recovery Through a Person - Centred Information and Communication Intervention -A Quasi-Experimental Longitudinal Design 2018 In: Psycho-Oncology. - 1057-9249 .- 1099-1611. ; 27, s. 208-208 Journal article (peer-reviewed)
15.	Hadimeri, Ursula (author) Factors affecting the physical characteristics of arterio-venous fistula in patients with renal failure 2019 Doctoral thesis (other academic/artistic)abstract Background and PurposeA patent access is vital for a dialysis patient. The arterio-venous fistula (AVF), the most important access for haemodialysis (HD), is frequently affected by extensive complications such as stenosis and occlusions.Study I: To investigate whether the dimensions of AVFs used for performing haemodialysis were affected by the original disease.Study II: To investigate if the diameter of the distal radiocephalic fistula could influence left ventricular variables in stable haemodialysis patients.Study III: To investigate whether a single Far Infrared (FIR) light treatment could alter blood velocity, AVF diameter or inflammatory markers.Study IV: To evaluate in what extent the renal diagnosis and radiological interventions affected the dysfunction of AVF and results of percutaneous transluminal angioplasty (PTA).Materials and methodsStudy I: The lumen diameter of the AVF was studied by ultrasound in 19 patients with autosomal dominant polycystic kidney disease (ADPKD) and in 19 control patients. The monitoring was performed along the forearm part of the vein, the maximal diameter was measured. The diameters of the two needle insertion sites were also measured.Study II: Nineteen patients were investigated with echocardiography, using M-mode recordings and measurements in the 2D image. Ultrasound and doppler ultrasound were performed. Transsonic measurements were performed after the ultrasound investigation. Measurements of the diameter of the AVF were performed in four locations. Heart variables were analysed regarding left ventricular (LV) criteria.Study III: Thirty patients with native AVF in the forearm were included. Each patient was his/her own control. Ultrasound examinations of the AVF diameter and blood flow velocity were performed before and after a single Far Infrared light (FIR) treatment.Study IV: 522 radiological investigations and endovascular treatments between January 1, 2006 and December 31, 2014 were analysed in 174 patients, retrospectively. All investigations had been performed due to clinical suspicion of impaired AVF function. All stenoses were evaluated and the number, degree, length, location and relation to anastomosis were recorded. After PTA the remaining stenoses were evaluated again and complications were recorded.ResultsStudy I: The diameter of the AVF at the maximal site in patients with ADPKD was significantly wider than that for the control patients.Study II: A larger AVF mean and maximal diameter worsened left ventricular characteristics.Study III: A single FIR treatment resulted in a significant increase in blood velocity over the AV fistula from a mean of 2.1±1.0 m/s to 2.3±1.0 m/s. The diameter of the arterialized vein became wider, i.e. 0.72±0.02 to 0.80±0.02 cm. The increase in fistula blood velocity correlated positively with baseline serum-urate and the increase in venous diameter correlated positively with the baseline plasma orosomucoid concentration.Study IV: The degree of AVF stenosis before PTA correlated significantly with the degree of remaining stenosis after intervention. Arterial stenosis was significantly more frequent among patients with diabetic nephropathy and interstitial nephritis. A shorter life span between PTAs was related to diabetic nephropathy.ConclusionsStudy I: The receiving veins of AVF in patients with ADPKD have an abnormality that causes a greater than normal dilatation in response to the arterialization.Study II: The maximal diameter of the distal AVF seems to be a sensitive marker of LV impairment in stable haemodialysis patients.Study III: A single FIR treatment increased AVF blood velocity and vein diameter. Thus, one FIR treatment can help maturation of AVF in the early postoperative course.Study IV: Repeated PTA was performed significantly more often in patients with diabetic nephropathy. Clinically significant stenosis should be dilated as soon as possible. Occlusion of the AVF should be thrombolyzed and/or dilated when diagnosed.
16.	Henoch, Ingela, 1956, et al. (author) Nursing students' experiences of being involved in a clinical research project. 2014 In: Sigma Theta Tau International Honor Society’s 2nd European Regional Conference i Göteborg, Sverige, 2014-06-16 – 06-18.. Conference paper (other academic/artistic)abstract Background: Nursing education can positively affect nurses' attitudes toward nursing research, resulting in better patient outcomes. Experiential learning theory was the basis for this study. Making use of the students' experiences, observations and reflections in training related to nursing research could facilitate the students' use of a deep learning approach and thus contribute to a better understanding of nursing research and evidence-based practice. Aim: To explore nursing students' experiences of involvement in clinical research, their approach to learning and their interest in nursing research. Design/methods: This was a cross-sectional study in which 126 nursing students were invited to be involved as data collectors in a research project as part of their training in research methodology in second year of nurse education. The data collection concerned to help patients to complete a symptom assessment form in a structured interview. The students completed an evaluation form and the Revised Study Process Questionnaire, exploring deep and surface level of approach to learning. The questionnaires were analyzed quantitatively and one open-ended question was analyzed qualitatively. Results: On the whole, the students were happy to be involved in the data collection although a minority felt uncertain and exposed. Students with a deeper approach to learning felt that their involvement had increased their interest in nursing research and their interest and knowledge of symptom assessment and they stated that data collection should be a regular feature of the course. Conclusions: Participation as data collectors in research has the potential to increase interest in nursing research among students with higher levels of deep learning. Further studies are needed to examine ways to increase interest in research among students with lower levels of deep learning.
17.	Henoch, Ingela, 1956, et al. (author) Nursing students' experiences of involvement in clinical research : An exploratory study 2014 In: Nurse Education in Practice. - : Churchill Livingstone. - 1471-5953 .- 1873-5223. ; 14:2, s. 188-194 Journal article (peer-reviewed)abstract Background Nursing education can positively affect nurses' attitudes toward nursing research, resulting in better patient outcomes. Experiential learning theory was the basis for this study. Objectives To explore nursing students' experiences of involvement in clinical research, their approach to learning and their interest in nursing research. Design Cross-sectional. Methods One hundred and twenty-six nursing students were invited to be involved as data collectors in a research project as part of their training in research methodology. The students completed an evaluation form and the Revised Study Process Questionnaire. The questionnaires were analyzed quantitatively and one open-ended question was analyzed qualitatively. Results On the whole, the students were happy to be involved in the data collection although a minority felt uncertain and exposed. Students with a deeper approach to learning felt that their involvement had increased their interest in nursing research and they stated that data collection should be a regular feature of the course. Conclusions Participation as data collectors in research has the potential to increase interest in nursing research among students with higher levels of deep learning. Further studies are needed to examine ways to increase interest in research among students with lower levels of deep learning.
18.	Henoch, Ingela, 1956, et al. (author) Palliative Care Research : A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012 2016 In: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 30:1, s. 5-25 Research review (peer-reviewed)abstract Background: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.Methods: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.Results: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.Conclusions: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
19.	Henoch, Ingela, 1956, et al. (author) Symptom Distress Profiles in Hospitalized Patients in Sweden: A Cross-Sectional Study. 2014 In: Research in nursing & health. - : Wiley. - 1098-240X .- 0160-6891. ; 37:6, s. 512-523 Journal article (peer-reviewed)abstract Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone. © 2014 Wiley Periodicals, Inc.
20.	Henoch, Ingela, 1956, et al. (author) Symptom distress profiles in hospitalized patients in Sweden—a point prevalence survey 2014 In: Quality of life research. 21st Annual Conference of the International Society for Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. Conference paper (other academic/artistic)abstract Context: Troublesome symptoms are the most common reason for seeking hospital care. Since many patients report multiple symptoms concurrently, symptom research needs to study symptom clusters. There are two conceptual approaches to symptom cluster research: (a) the identification of symptom clusters by investigating associations among different symptom reports; (b) the identification of subgroups of patients that reflect different symptom profiles. Symptom clusters and symptom profiles have been examined in patients with cancer. However, no studies have examined symptom profiles based on patients' self-reported symptom distress in heterogeneous groups of hospitalised patients. Objective: To examine symptom distress profiles of hospitalised patients. Method: Symptom distress data were collected at two hospitals in Sweden via point prevalence surveys using numeric rating scales (NRS) of pain, dyspnoea, fatigue, sleeping difficulties, loss of appetite, depression and anxiety. Patients were grouped according to symptom experience using two approaches: (a) classification of patients with high versus low pain and fatigue distress scores; (b) classification based on a latent class analysis of symptom profiles. Results: In the 710 patients, fatigue (76.2%) and pain (65.3%) were the most prevalent symptoms (median NRS 5 to 6). The group of patients experiencing high fatigue and pain distress were to a greater extent female, living alone and diagnosed with musculoskeletal diseases, and had a higher number of symptoms than the low pain and fatigue group. The latent class analysis revealed three latent classes that differed in ratings and symptom distress profiles. People in the low symptom distress class (LSDC) reported less distress on average than people in medium (MSDC) and high symptom distress classes (HSDC). Compared to LSDC, people in HSDC were more likely to be female and live alone. Latent class membership, reflective of different symptom distress profiles, was not substantially explained by different diagnoses. Conclusions: The majority of patients admitted to hospital experience symptom distress at a level that requires symptom management. Symptom distress is a subjective illness experience and needs to be treated as such, irrespective of diagnosis. Although symptom distress was analysed with two different approaches, the most distressed patients were women who were living alone.
21.	Håkanson, Cecilia, et al. (author) Dynamics in a complex person-centred intervention process in colorectal cancer care. An exploration based in health professionals ́ perspectives 2018 In: Psycho-Oncology. Vol 27 (Suppl 3), abstract no. 674. - 1057-9249. Conference paper (other academic/artistic)
22.	Håkanson, Cecilia, et al. (author) Experience-based knowledge in the care of homeless people with severe illness and complex care needs 2014 Conference paper (other academic/artistic)
23.	Håkanson, Cecilia, et al. (author) Experience-based knowledge in the care of homeless people with severe illness and complex care needs 2014 In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 28:6, s. 789-789 Journal article (peer-reviewed)abstract Background: The number of homeless people in Sweden amounts to approximately 34 000. Of those about 4500 live in streets or shelters. The mortality rate among homeless people outnumbers other groups in the society. Often they have severe, multiple mental and physical illnesses, drug abuse and a variety of complex care needs, including palliative. From an international perspective, research related to care for homeless people with severe illness and complex care needs is very sparse (no Swedish studies have been identified). Among the few that have been found, challenges related to the homeless situation and the illness panorama are reported. From the perspective of the homeless persons themselves, studies report stigmatisation, lack of respect and competence among health-care professionals, and insufficient organisation of health care.Aim: The aim of this study is to explore the development of experience-based knowledge among health care professionals and social workers in a unique setting, in which advanced inpatient health -and social care, including palliative care is provided to homeless people.Methods: In this on-going qualitative case-study, clinically relevant and applicable knowledge is focused. Repeated focus group discussions and coupled thematic interviews were performed with staff (physicians, social workers, mental carers, nurses). Analysis is performed with an interpretive descriptive method.Results and implication: The results, which are currently being processed, will present staffs’ experiences of identification and assessment of individual care needs, specific knowledge development and requirement in relation to palliative care and homelessness, and challenges, obstacles and opportunities for meeting the needs of severely ill and dying homeless people. The results will provide knowledge of importance for the development of care for severely ill homeless persons.
24.	Håkanson, Cecilia, et al. (author) Preparedness for Colorectal Cancer Surgery and Recovery Through a Person-Centred In-formation and Communication Intervention – A Quasi-Experimental Longitudinal Design 2018 In: Psycho-Oncology, Vol. 27 (suppl. 3), s. 208 (abstract no. 676). - 1057-9249. Conference paper (other academic/artistic)
25.	Håkanson, Cecilia, 1968-, et al. (author) Providing Palliative Care in a Swedish Support Home for People Who Are Homeless 2016 In: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 26:9, s. 1252-1262 Journal article (peer-reviewed)abstract Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person’s health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.
26.	Johansson, Yvonne A., 1956-, et al. (author) Assessment of cognitive function and delirium - Lack of clinical routines 2018 Conference paper (peer-reviewed)abstract Introduction: Cognitive impairment and delirium are often unidentified in hospitalized patients. Despite the fact that 40 % of all cases of delirium might be prevented, national guidelines are missing in Sweden. Study aim was to examine the routines about assessing cognitive function and delirium in a university hospital and a county hospital in Sweden.Methods: A web based questionnaire was developed and distributed to 58 managers. The questionnaire addressed routines for identifying cognitive impairment and delirium in clinical practice, for instance which assessment tools, and which terms were used.Results: The response rate was 43 % (25/58) equally distributed for nurses and physicians managers (43 and 44 %). Study findings showed that structured assessment of cognitive function and delirium were missing. Twelve managers (48 %) had established routines for assessment of cognitive function and seven (28 %) for assessment of delirium. It was unclear how the assessments were performed. Most common was free descriptions based on varying questions. Assessment tools and the term delirium were rarely used. Conclusion: Established routines of assessing cognitive function and delirium are missing. Validated rapid clinical assessment tools for cognitive function and delirium are needed as well as consensus to use the term “delirium”.
27.	Johansson, Yvonne A, 1956-, et al. (author) Core values - A strategy to achieve person-centered care 2018 In: 26TH INTERNATIONAL CONFERENCE ON HEALTH PROMOTING HOSPITALS AND HEALTH SERVICES. Health promotion strategies to achieve reorientation of health services: evidence-based policies and practices. Bologna, Italy \| June 6-8, 2018. Conference paper (other academic/artistic)
28.	Johansson, Yvonne A, 1956-, et al. (author) Delirium bör bedömas enhetligt och strukturerat i vården 2018 In: Läkartidningen. - 0023-7205 .- 1652-7518. Journal article (pop. science, debate, etc.)
29.	Johansson, Yvonne A., 1956- (author) Delirium hos äldre patienter som vårdas på sjukhus : identifiering av symtom, tecken och riskfaktorer samt journalförda vårdåtgärder 2022 Doctoral thesis (other academic/artistic)abstract I samband med sjukhusvård kan äldre patienter riskera försämrad hälsa, inklusive delirium. Delirium, som är vanligt hos äldre patienter på sjukhus, är ett akut och allvarligt tillstånd med svåra konsekvenser för såväl patienten som för närstående, vårdpersonal och hälso- och sjukvård. Det är viktigt att delirium förebyggs, identifieras och behandlas. Forskning visar dock på brister i vården, vilket kan påverka patienternas hälsa och välbefinnande negativt. Det övergripande syftet med avhandlingen var att identifiera och beskriva symtom, tecken, riskfaktorer och vårdåtgärder vid delirium hos äldre patienter som vårdas på sjukhus samt att utvärdera tillämpbarheten av ett bedömningsinstrument för att identifiera delirium. Alla deltagande patienter var 65 år och äldre och rekryterades från ett länssjukhus (I-IV) och ett universitetssjukhus (III, IV). Dessutom ingick de bedömare som bedömt delirium med bedömningsinstrumentet 4AT i delarbete IV. Delarbetena bestod av en kvantitativ subgruppsanalys (n=25) av en punktprevalensstudie (n=210), en retrospektiv journalgranskning (n=78) med kvalitativ analys och två tvärsnittsstudier baserade på samma urval (n=200) med kvantitativa (III, IV) och kvalitativa analyser (IV). Data samlades in genom strukturerade intervjuer, validerade instrument, patientjournaler, frågeformulär och en öppen intervjufråga.Patienterna rapporterade svåra och besvärande symtom vilka hade journalförts i begränsad omfattning (14%). Även kognitiv funktionsnedsättning och patienternas beskrivningar av sitt välbefinnande hade journalförts i liten utsträckning. Patienternas tecken på delirium ledde till nedsatt förmåga att såväl delta i sin egen vård som att undvika skada. Vårdpersonalen svarade delvis på patienternas tecken på delirium då åtgärderna kunde vara både anpassade, bristfälliga och utöver vanlig vård. Skörhet var den starkaste riskfaktorn för delirium. Andelen patienter med delirium ökade med svårighetsgraden av skörhet. Den svenska versionen av bedömningsinstrumentet 4AT för att identifiera delirium hade diagnostisk precision och klinisk användbarhet med hög interbedömarreliabilitet. Bedömningsinstrumentet 4AT tolererades väl av patienterna, var lätt att använda och tog några minuter att genomföra. Detta innebär att det nu finns ett enkelt bedömningsinstrument för delirium på svenska som kan användas för att bedöma delirium hos äldre patienter som vårdas på sjukhus.Endast en mindre del av den studerade vården kan ses som personcentrerad och patientsäker. Struktur, systematik och ett helhetsperspektiv tycktes saknas, liksom ett personcentrerat förhållnings- och arbetssätt. För att minska incidensen av delirium, lidande och kostnader behöver vården förbättras. Det finns behov av att öka kunskapen om delirium och att se delirium som en vårdskada inom all vård. Vidare finns behov av att utveckla vården genom att tydligt integrera ett personcentrerat och patientsäkert förhållnings- och arbetssätt för att nå en helhetssyn på patienten. Målet är att främja hälsa och välbefinnande genom att förebygga delirium. För att möjliggöra identifiering av individuella vårdbehov är det en förutsättning att etablera en tillitsfull vårdrelation med den äldre patienten, där patientens perspektiv tillvaratas. Individuella vårdbehov behöver identifieras strukturerat och systematiskt genom bedömning med bedömningsinstrument av symtom, tecken, välbefinnande, delirium och riskfaktorer för delirium innefattande skörhet samt kognitiv funktionsnedsättning. Detta möjliggör individuellt anpassade vårdåtgärder.Ett individuellt anpassat omhändertagande som överensstämmer med ett integrerat personcentrerat och patientsäkert förhållnings- och arbetssätt skulle kunna bidra till att minska incidensen av delirium vilket kan skapa positiva effekter för såväl patienter som för vårdpersonal och hälso- och sjukvård.
30.	Johansson, Yvonne A, 1956-, et al. (author) Delirium in older hospitalized patients—signs and actions : a retrospective patient record review 2018 In: BMC Geriatrics. - : BioMed Central. - 1471-2318. ; 18:1, s. 1-11 Research review (peer-reviewed)abstract BackgroundDelirium is common in older hospitalized patients, and is associated with negative consequences for the patients, next of kin, healthcare professionals and healthcare costs. It is important to understand its clinical features, as almost 40% of all cases in hospitals may be preventable. Yet, delirium in hospitalized patients is often unrecognized and untreated. Few studies describe thoroughly how delirium manifests itself in older hospitalized patients and what actions healthcare professionals take in relation to these signs. Therefore, the aim of this study was to describe signs of delirium in older hospitalized patients and action taken by healthcare professionals, as reported in patient records.MethodsPatient records from patients aged ≥65 (n = 286) were retrospectively reviewed for signs of delirium, which was found in 78 patient records (27%). Additionally, these records were reviewed for action taken by healthcare professionals in relation to the patients’ signs of delirium. The identified text was analyzed with qualitative content analysis in two steps.ResultsHealthcare professionals responded only in part to older hospitalized patients’ needs of care in relation to their signs of delirium. The patients displayed various signs of delirium that led to a reduced ability to participate in their own care and to keep themselves free from harm. Healthcare professionals met these signs with a variation of actions and the care was adapted, deficient and beyond the usual care. A systematic and holistic perspective in the care of older hospitalized patients with signs of delirium was missing.ConclusionImproved knowledge about delirium in hospitals is needed in order to reduce human suffering, healthcare utilization and costs. It is important to enable older hospitalized patients with signs of delirium to participate in their own care and to protect them from harm. Delirium has to be seen as a preventable adverse event in all hospitals units. To improve the prevention and management of older hospitalized patients with signs of delirium, person-centered care and patient safety may be important issues.
31.	Johansson, Yvonne A, 1956-, et al. (author) Diagnostic accuracy and clinical applicability of the Swedish version of the 4AT assessment test for delirium detection, in a mixed patient population and setting 2021 In: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 21:1 Journal article (peer-reviewed)abstract Background Delirium is common in older hospitalized patients. It has serious consequences e.g., poor health outcomes, mortality and increased costs. Despite that, many cases are undetected. Early detection of delirium is important in improving outcomes and use of assessment tools improves detection rates. The 4AT is a brief screening tool for delirium detection, which has not previously been translated into Swedish. The study aim was to evaluate diagnostic accuracy and clinical applicability of a Swedish version of the screening tool 4AT for delirium detection. Method This diagnostic test accuracy study used a quantitative and a qualitative approach and evaluated the patients' and the health care professionals' experiences of the tool. Study included 200 patients >= 65 years from a university hospital and a county hospital in two Swedish regions. Medical specialties were geriatric stroke/neurology, geriatric multimorbidity, severe cognitive impairment, orthopaedic, and urology. The translated 4AT was tested against the reference standard DSM-IV-TR criteria, based on the Organic Brain Syndrome scale and patient records. The 4AT was assessed simultaneously and independently by two assessors. Additionally, data was collected through patient record reviews, and questions about applicability to the patients (n = 200) and the assessors (n = 37). Statistical analyses, and qualitative content analyses were conducted. Results By reference standard 18% had delirium, and by 4AT 19%. The overall percent agreement was 88%, AUROC 0.808, sensitivity 0.70 (95% CI 0.51-0.84) and specificity 0.92 (95% CI 0.87-0.96). In the ward for severe cognitive impairment (n = 63) the 4AT was less sensitive and less specific. In the other wards (n = 132) sensitivity was 0.77 (95% CI 0.50-0.93), specificity 0.93 (95% CI 0.87-0.97), and AUROC 0.848. Interrater reliability (Kappa) was 0.918, p = < 0.001 (n = 144). The 4AT was well tolerated by patients, easy to use for health care professionals, and took a few minutes to conduct. Conclusion The Swedish version of 4AT is an accurate and applicable tool to use in clinical practice for detecting delirium in hospitalized patients across different medical specialities, and to use by different professionals and levels of seniority. To improve patient outcomes, we recommend the 4AT to be incorporated in clinical practice in health care settings in Sweden.
32.	Johansson, Yvonne A, 1956-, et al. (author) Hospital transition to person-centered care - a culture journey in practice 2017 In: 30th World Congress on Advanced Nursing Practice September 04-06, 2017 \| Edinburgh, Scotland. ; , s. 1- Conference paper (peer-reviewed)abstract This action research project started in 2015 with the aim to achieve an overall sustainable hospital transition to person-centered care. In the first wave of change towards an overall hospital transition to person-centered care, hospital managers were invited to work-shops and discussions. Eight hospital units were nominated as pilot units. Specific acilitators/change leaders were educated in the philosophy of person-centered care. A learning network was created including the project managers, project unit managers and facilitators/change leaders. Based on the theory of person-centered care, and the importance of focusing soft skills and learning skills and not just technical skills, as well as experiences and reflections during this action research project, a general model for transition to person-centered care was developed. Steps included in the model: 1) Introduction; 2) V alues linked to person-centered care; 3) Multidisciplinary teams including/involving patients and/or next of kin; 4) Communication skills, and in-depth knowledge about person-centered care, 5) Practical application of the person-centered approach into clinical practice.
33.	Johansson, Yvonne A, 1956-, et al. (author) När inträffar undvikbara och icke undvikbara skador? : Journalgranskning med Markörbaserad Journalgranskning 2016 Conference paper (other academic/artistic)
34.	Johansson, Yvonne A., 1956-, et al. (author) Risk factors associated with delirium among older hospitalized patients, with focus on frailty and co-morbidity Other publication (other academic/artistic)
35.	Johansson, Yvonne A, 1956-, et al. (author) Symptoms and Well-Being in Older Hospitalized Patients with Cognitive Impairment, As Self-Reported and Reported in Patient Records: A Quantitative Exploratory Subgroup Analysis 2021 In: Dementia and Geriatric Cognitive Disorders Extra. - : S. Karger AG. - 1664-5464. ; 11:2, s. 71-77 Journal article (peer-reviewed)abstract Introduction: Given the aging population and the high prevalence of cognitive impairment in older hospitalized patients, it is essential to provide good fundamental care to these vulnerable patients, who easily might be affected by poor outcomes as delirium. Risk factors for delirium are, for example, cognitive impairment, old age, pain, and sleep deprivation. Different symptoms are often unidentified in hospitals, and associated with poor well-being, but this is rarely studied in older patients with cognitive impairment. The study aim was to examine symptoms and sense of well-being in older hospitalized patients with cognitive impairment, as self-reported and reported in patient records. Methods: Exploratory quantitative subgroup (n = 25) analysis of a point-prevalence study (n = 210). Inclusion criteria were age >= 65, and cognitive impairment. Data were collected through structured interviews, validated instruments, and patient records. Associations between well-being and symptoms, and concordance between the occurrence of self-reported symptoms and symptoms reported in patient records were analyzed. Results: The patients reported severe and distressing symptoms that were sparsely reported (14%) in their records. As well were cognitive impairment, and the patients' own descriptions of their well-being. Some symptoms and the total symptom burden were associated with poor well-being. Discussion/Conclusion: To our knowledge, this hypothesis-generating study is one of few studies that describe both symptoms and well-being as self-reported and reported in patient records, in vulnerable patients due to old age, cognitive impairment, and hospitalization. Despite the limited sample size, the results indicate that symptoms were more insufficient alleviated in these patients compared to patients with normal cognitive function in other studies. To our knowledge, this has not been shown previously. Additionally, patients' own experiences were sparsely reported in their records. A larger sample size and longitudinal design has the potential to determine if symptom alleviation differs between patients with and without cognitive impairment, and if a total symptom burden increases the risk of poor outcomes as delirium in vulnerable patients.
36.	Kenne Sarenmalm, Elisabeth, 1956, et al. (author) Changes in health-related quality of life may predict recurrent breast cancer. 2009 In: European Journal of Oncology Nursing. - : Elsevier BV. - 1532-2122 .- 1462-3889. ; 13:5, s. 323-329 Journal article (peer-reviewed)abstract BACKGROUND: Patient-reported outcomes incorporated in cancer clinical trials, are increasingly hypothesized to be predictors of disease-free survival. Previous research supports health-related quality of life (HRQoL) as an independent predictor of survival in patients with advanced or metastatic breast cancer. In contrast, recent studies provide evidence that baseline HRQoL scores are not associated with increased risk of relapse or survival in women with early-stage breast cancer. One plausible assumption might be that baseline HRQoL scores are limited as predictors of a recurrence of breast cancer several years after the initial diagnosis. In this explorative study, we examined whether changes in HRQoL over time may predict breast cancer recurrence. As a supplement, we investigated whether baseline HRQoL predicted recurrence. METHODS: The study sample consisted of 141 participants in the International Breast Cancer Study Group adjuvant Trial 12-93 and Trial 14-93, from the Western region of Sweden. HRQoL was assessed, during a 5-year follow up. Poisson regression analysis was used to estimate the hazard function of recurrence depending on time since primary diagnosis and on HRQoL variables. RESULTS: According to the Poisson multivariable regression analysis changes in physical well-being (beta=0.00439, p-value=0.0470), and nausea/vomiting (beta=-0.00612, p-value=0.0136) significantly predicted recurrence. Baseline HRQoL outcomes were not predictors of recurrence. CONCLUSIONS: Changes of HRQoL during adjuvant therapy may be associated with recurrence. This explorative finding needs prospective investigation.
37.	Kenne Sarenmalm, Elisabeth, 1956, et al. (author) Coping with recurrent breast cancer: predictors of distressing symptoms and health-related quality of life. 2007 In: Journal of pain and symptom management. - : Elsevier BV. - 0885-3924 .- 1873-6513. ; 34:1, s. 24-39 Journal article (peer-reviewed)abstract Little is known about how postmenopausal women with recurrent breast cancer cope with distressing symptoms and which factors predict health-related quality of life (HRQOL). In the present study, 56 consecutively enrolled patients completed questionnaires measuring symptom occurrence, coping capacity, coping efforts, and HRQOL at the time of recurrence. Results from this study illustrate that women with recurrent breast cancer suffer from multiple, concurrent, and interrelated symptoms of illness, anxiety, depression, and fatigue. Highly prevalent symptoms are lack of energy, difficulty sleeping, pain, worrying, problems with sexual interest, feeling sad, and dry mouth. The most frequently occurring symptom is problem with sexual interest, and the most severe symptom is worrying. The most distressing symptom experienced is pain. The majority of the women report 10-23 symptoms. Women who experience multiple symptoms also report higher levels of symptom distress. The experience of distressing symptoms is predicted by coping capacity, and the coping efforts experienced predict HRQOL. Patients with lower coping capacity report higher prevalence of symptoms, experience higher levels of distress, and experience worse perceived health, which in turn may decrease their HRQOL. To help women manage recurrent breast cancer, it is important to use multidimensional measurement to identify, evaluate, and treat distressing symptoms, and not assess single symptoms only. Care must be based upon the awareness of critical factors that exacerbate vulnerability to distress, as well as the ability to adapt to a recurrent breast cancer disease.
38.	Kenne Sarenmalm, Elisabeth, 1956, et al. (author) Experience and predictors of symptoms, distress and health-related quality of life over time in postmenopausal women with recurrent breast cancer. 2008 In: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 17:5, s. 497-505 Journal article (peer-reviewed)abstract The purpose of this study was to explore the symptom experience and predictors of distress and quality of life over time in women with recurrent breast cancer. Fifty-six women completed questionnaires at the diagnosis of recurrence, 1 month, 3 and 6 months after recurrence. A majority of women reported multiple, concurrent and distressing symptoms such as lack of energy, difficulty sleeping, pain, worry and problems with sexual interest or activity during the recurrent breast cancer trajectory. The highest level of symptom burden and distress and decreased quality of life was reported 3 months after recurrence. Although distress declined and quality of life improved over time, patients reported persistent symptoms. Of the patients at increased risk of vulnerability to distress were women who experienced multiple and concurrent symptoms. Other risk factors were co-morbidity, prehistory of anxiety and depression and progressive or terminal disease. Fatigue, pain and depression explained 68-72% of the variance in distress. Distress explained 44-46% of the variance in quality of life. These findings suggest that symptoms are important contributors to the distress experience, and that distress has a severe impact on quality of life. The care of women with recurrent breast cancer must be based upon the awareness of critical factors that exacerbate the vulnerability to distress throughout the disease trajectory.
39.	Kenne Sarenmalm, Elisabeth, 1956, et al. (author) Making Sense of Living Under the Shadow of Death: Adjusting to a Recurrent Breast Cancer Illness 2009 In: QUALITATIVE HEALTH RESEARCH. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 19:8, s. 1116-1130 Journal article (peer-reviewed)abstract Women with recurrent breast cancer face many difficulties and challenges, from clinical symptoms of disease progression and treatment to a range of emotional responses. Guided by grounded theory methodology, we explored the main concerns of women with recurrent breast cancer, and how they were dealing with their situations. Data were collected from 40 in-depth interviews with 20 women diagnosed with recurrent breast cancer. The core category illustrated the process of “making sense of living under the shadow of death,” and was based on the women's experiences of adjusting to living with a persistent life-threatening illness. Confronting a recurrence of breast cancer was a life-altering event. Moving through a difficult and challenging time, women eased their distress by letting go of losses and reassessing important values. Through a personal transition women transcended living with a life-threatening illness. These findings emphasize the importance of recognizing existential distress in clinical practice.
40.	Kenne Sarenmalm, Elisabeth, et al. (author) Mindfulness and its efficacy for psychological and biological responses in women with breast cancer 2017 In: Cancer Medicine. - : Wiley. - 2045-7634. ; 6:5, s. 1108-1122 Journal article (peer-reviewed)abstract Many breast cancer survivors have to deal with a variety of psychological and physiological sequelae including impaired immune responses. The primary purpose of this randomized controlled trial was to determine the efficacy of a mindfulness-based stress reduction (MBSR) intervention for mood disorders in women with breast cancer. Secondary outcomes were symptom experience, health status, coping capacity, mindfulness, posttraumatic growth, and immune status. This RTC assigned 166 women with breast cancer to one of three groups: MBSR (8 weekly group sessions of MBSR), active controls (self-instructing MBSR) and non-MBSR. The primary outcome measure was the Hospital Anxiety and Depression Scale. Secondary outcome measures were: Memorial Symptom Assessment Scale, SF-36, Sense of Coherence, Five Facets of Mindfulness Questionnaire, and Posttraumatic Growth Index. Blood samples were analyzed using flow cytometry for NK-cell activity (FANKIA) and lymphocyte phenotyping; concentrations of cytokines were determined in sera using commercial high sensitivity IL-6 and IL-8 ELISA (enzyme-linked immunosorbent assay) kits. Results provide evidence for beneficial effects of MBSR on psychological and biological responses. Women in the MBSR group experienced significant improvements in depression scores, with a mean pre-MBSR HAD-score of 4.3 and post-MBSR score of 3.3 (P = 0.001), and compared to non-MBSR (P = 0.015). Significant improvements on scores for distress, symptom burden, and mental health were also observed. Furthermore, MBSR facilitated coping capacity as well as mindfulness and posttraumatic growth. Significant benefits in immune response within the MBSR group and between groups were observed. MBSR have potential for alleviating depression, symptom experience, and for enhancing coping capacity, mindfulness and posttraumatic growth, which may improve breast cancer survivorship. MBSR also led to beneficial effect on immune function; the clinical implications of this finding merit further research.
41.	Kenne Sarenmalm, Elisabeth, 1956, et al. (author) Mindfulness based stress reduction study design of a longitudinal randomized controlled complementary intervention in women with breast cancer 2013 In: BMC Complementary and Alternative Medicine. - : BioMed Central (BMC). - 1472-6882. ; 13 Journal article (peer-reviewed)abstract Background: The stress of a breast cancer diagnosis and its treatment can produce a variety of psychosocial sequelae including impaired immune responses. Mindfulness Based Stress Reduction (MBSR) is a structured complementary program that incorporates meditation, yoga and mind-body exercises. Despite promising empirical evidence for the efficacy of MBSR, there is a need for randomized controlled trials (RCT). There is also a need for RCTs investigating the efficacy of psychosocial interventions on mood disorder and immune response in women with breast cancer. Therefore, the overall aim is to determine the efficacy of a Mindfulness Based Stress Reduction (MBSR) intervention on well-being and immune response in women with breast cancer.Methods and design: In this RCT, patients diagnosed with breast cancer, will consecutively be recruited to participate. Participants will be randomized into one of three groups: MBSR Intervention I (weekly group sessions + self-instructing program), MBSR Intervention II (self-instructing program), and Controls (non-MBSR). Data will be collected before start of intervention, and 3, 6, and 12 months and thereafter yearly up to 5 years. This study may contribute to evidence-based knowledge concerning the efficacy of MBSR to support patient empowerment to regain health in breast cancer disease.Discussion: The present study may contribute to evidence-based knowledge concerning the efficacy of mindfulness training to support patient empowerment to regain health in a breast cancer disease. If MBSR is effective for symptom relief and quality of life, the method will have significant clinical relevance that may generate standard of care for patients with breast cancer.Trial registration: ClinicalTrials.gov: NCT01591915. © 2013 Kenne Sarenmalm et al.; licensee BioMed Central Ltd.
42.	Kenne Sarenmalm, Elisabeth, 1956, et al. (author) Relationship of sense of coherence to stressful events, coping strategies, health status, and quality of life in women with breast cancer 2013 In: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 22:1, s. 20-27 Journal article (peer-reviewed)abstract Objective: To test the hypothesis that Antonovsky's concept of sense of coherence (SOC) predicts stressful events, coping strategies, health status, and quality of life (QoL) in a cohort of postmenopausal women (n = 131) with newly diagnosed primary or recurrent breast cancer.Methods: Regression analyses of longitudinal data at baseline through 6 months following breast cancer diagnosis examined the relationships between SOC (13-item version), daily assessment of coping with stressful events, health status, and QoL (EORTC QLQ-30).Results: The findings support Antonovsky's concept of SOC. Women with strong SOC reported fewer stressful events and more days without stressful events. They used more coping strategies and more frequently used distraction, situation redefinition, direct action, and relaxation, but seldom religion, to cope with stressful events, and reported better health status and QoL. Women with weak SOC experienced more distress and used fewer coping strategies, and they more frequently used coping strategies such as catharsis and seeking social and spiritual support, but seldom acceptance of the situation. They reported worse health status and QoL, regardless of disease stage or treatment. The relationships between SOC and health status and QoL were linear.Conclusions: Sense of coherence significantly predicts distress, number and type of coping strategies such as direct action and relaxation, health status, and QoL in women with breast cancer. Our data suggest that the SOC scale may be a useful screening tool to identify individuals particularly vulnerable to distress and unable to cope adequately. Assessing SOC strength may assist health care providers to provide individualized patient interventions.
43.	Kenne Sarenmalm, Elisabeth, 1956, et al. (author) Swedish Version of the Distress Thermometer: Validity Evidence in Patients With Colorectal Cancer. 2018 In: Journal of the National Comprehensive Cancer Network : JNCCN. - : Harborside Press, LLC. - 1540-1413 .- 1540-1405. ; 16:8, s. 959-966 Journal article (peer-reviewed)abstract Background: The objective of this study was to validate the NCCN Distress Thermometer (DT), including the accompanying Problem List (PL), in a Swedish population of patients diagnosed with colorectal cancer (CRC). Methods: A total of 488 patients diagnosed with CRC completed the DT/PL and EORTC core quality-of-life questionnaire (QLQ-C30) before surgery. Construct validity of the PL was analyzed using a confirmatory factor analysis. Internal consistency reliability (ICR) was tested using Cronbach's alpha coefficient. Correlations between the reported PL areas and QLQ-C30 function scales were used to explore convergent validity. Discriminant validity was examined by evaluating associations between the DT and QLQ-C30 measures of overall health-related quality of life (HRQoL). Results: Findings showed that the Swedish translation of the DT/PL is consistent with the original English version. The DT has good ICR, with the total number of reported problems significantly correlating with DT scores (r=0.67; P<.001). Analysis of convergent validity indicated that the PL areas significantly correlated with QLQ-C30 function scales, with emotional problems showing the highest correlation (r=0.76; P<.001), and item-level correlation analyses showed significant correlations between symptoms. There was also good discriminant validity between the DT and the QLQ-C30 in terms of HRQoL, including overall health status (r=-0.49; P<.001) and overall quality of life (r=-0.57; P<.001). Furthermore, there was good discriminant validity between the DT and QLQ-C30 regarding poor, moderate, and excellent HRQoL. Conclusions: These findings provide validity evidence regarding the DT, including the PL. Findings also show that the DT has good potential for screening distress-related practical, family, emotional, and physical problems during the cancer trajectory in Swedish-speaking patients. Additionally, the DT seems to be an effective screening tool to detect patients with poor, moderate, and excellent HRQoL.
44.	Kenne Sarenmalm, Elisabeth, et al. (author) Symptom Burden Clusters : A Challenge for Targeted Symptom Management. A Longitudinal Study Examining Symptom Burden Clusters in Breast Cancer 2014 In: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 47:4, s. 731-741 Journal article (peer-reviewed)abstract Context: Although there has been a growing interest in cancer symptom clusters, less is known about symptom burden clusters.Objectives: To explore clusters of burdensome symptoms over time, the impact on health status and quality of life, and coping capacity in patients with breast cancer.Methods: In this longitudinal study, a sample of 206 patients completed the Memorial Symptom Assessment Scale, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and the Sense of Coherence scale, at diagnosis of primary or recurrent breast cancer, and at one-, three-, and six-month follow-ups.Results: Three clusters of burdensome symptoms were identified: emotional symptom burden, gastrointestinal symptom burden, and unwellness symptom burden. Most burdensome were emotional symptoms, with worrying, feeling sad, and feeling nervous as the core or defining symptoms. Over time, additional symptoms escalated the emotional symptom burden. The gastrointestinal symptom burden, with "change in the way food tastes" as a core symptom, was more often associated with chemotherapy. Less stable over time, the unwellness symptom burden could be interpreted as short- and long-term side effects of hormonal therapy. Of these clusters, only the emotional symptom burden cluster significantly diminished health status and quality of life. Patients reporting lower coping capacity experienced higher levels of symptom burden.Conclusion: This study provides insights into symptom burden clusters over time. A challenging approach toward symptom management in clinical oncology is to target the burden of a symptom cluster and to recognize the need for individually designed interventions to ameliorate symptom burden in cancer patients.
45.	Kenne Sarenmalm, Elisabeth, 1956 (author) When Breast Cancer Returns. Women's experiences of Health, Illness and Adjustment During the Breast Cancer Trajectory 2008 Doctoral thesis (other academic/artistic)abstract Although a recurrence of breast cancer is associated with significant distress, affecting health-related quality of life (HRQOL), little is known about women?s experience during the recurrent breast cancer trajectory. The primary aim of this thesis was to explore women?s experiences of health, illness and adjustment to a recurrence of breast cancer. Both deductive and inductive methods were used. The first aim was to explore whether HRQOL factors predicted recurrence. The second aim was to explore distress, symptoms and HRQOL, over time in women with recurrent breast cancer. The third aim was to explore what major concerns these women experienced and how they deal with their situations living with recurrent breast cancer. The four papers included in this thesis are based on selected quantitative data (Papers I?III) and qualitative data (Paper IV). Exploratory findings suggest that changes in physical well-being and nausea/vomiting may predict recurrence. Women with recurrent breast cancer experience multiple, concurrent, and persistent symptoms. Nearly ninety percent of the patients reported fatigue at the time of recurrence. Women with a strong sense of coherence reported a lower prevalence of symptoms and experienced lower levels of distress and better perceived adjustment to their illness, as well as perceived a better health and quality of life. Distress had a major impact on HRQOL. Over time, women adjusted to the many implications of a life-threatening illness through personal transition. By making sense of living with a threat to their lives, the women adjusted to their recurrence. The findings highlight the major existential impact of a recurrence. Promoting health is possible, even in severe illness and in unchangeable and almost unbearable situations. Opportunities to manage adversity remain. Women may transcend their illness by finding new meaning through discovering or re-discovering significant values in life, and creating wellness by being in the present moment.
46.	Nasic, Salmir, et al. (author) Sex-specific time trends of long-term graft survival after kidney transplantation : a registry-based study 2023 In: Renal failure. - : Taylor & Francis. - 0886-022X .- 1525-6049. ; 45:2 Journal article (peer-reviewed)abstract Background: Sex-specific trends over time with respect to kidney graft survival have scarcely been described in earlier studies. The present study aimed to examine whether kidney graft survival differs between women and men over time.Methods: This study was based on prospectively collected data extracted from a quality registry including all kidney transplant patients between January 1965 and September 2017 at the transplantation center of a university hospital in Sweden. The transplantation center serves a population of approximately 3.5 million inhabitants. Only the first graft for each patient was included in the study resulting in 4698 transplantations from unique patients (37% women, 63% men). Patients were followed-up until graft failure, death, or the end of the study. Death-censored graft survival analysis after kidney transplantation (KT) was performed using Kaplan-Meier analysis with log-rank test, and analysis adjusted for confounders was performed using multivariable Cox regression analysis.Results: Median age at transplantation was 48 years (quartiles 36–57 years) and was similar for women and men. Graft survival was analyzed separately in four transplantation periods that represented various immunosuppressive regimes (1965-1985, 1986–1995, 1996–2005, and 2006–2017). Sex differences in graft survival varied over time (sex-by-period interaction, p = 0.026). During the three first periods, there were no significant sex differences in graft survival. However, during the last period, women had shorter graft survival (p = 0.022, hazard ratio (HR) 1.71, 95% confidence interval (CI) 1.1–2.7, adjusted for covariates). Biopsy-proven rejections were more common in women.Conclusions: In this registry-based study, women had shorter graft survival than men during the last observation period (years 2006–2017).
47.	Nasic, Salmir, et al. (author) Sex-specific time trends of long-term graft survival after kidney transplantation - a registry-based study 2023 In: Renal Failure. - 0886-022X. ; 45:2 Journal article (peer-reviewed)abstract Background Sex-specific trends over time with respect to kidney graft survival have scarcely been described in earlier studies. The present study aimed to examine whether kidney graft survival differs between women and men over time.Methods This study was based on prospectively collected data extracted from a quality registry including all kidney transplant patients between January 1965 and September 2017 at the transplantation center of a university hospital in Sweden. The transplantation center serves a population of approximately 3.5 million inhabitants. Only the first graft for each patient was included in the study resulting in 4698 transplantations from unique patients (37% women, 63% men). Patients were followed-up until graft failure, death, or the end of the study. Death-censored graft survival analysis after kidney transplantation (KT) was performed using Kaplan-Meier analysis with log-rank test, and analysis adjusted for confounders was performed using multivariable Cox regression analysis.Results Median age at transplantation was 48 years (quartiles 36-57 years) and was similar for women and men. Graft survival was analyzed separately in four transplantation periods that represented various immunosuppressive regimes (1965-1985, 1986-1995, 1996-2005, and 2006-2017). Sex differences in graft survival varied over time (sex-by-period interaction, p = 0.026). During the three first periods, there were no significant sex differences in graft survival. However, during the last period, women had shorter graft survival (p = 0.022, hazard ratio (HR) 1.71, 95% confidence interval (CI) 1.1-2.7, adjusted for covariates). Biopsy-proven rejections were more common in women.Conclusions In this registry-based study, women had shorter graft survival than men during the last observation period (years 2006-2017).
48.	Nyqvist, Jenny, et al. (author) Metachronous and synchronous occurrence of 5 primary malignancies in a female patient between 1997 and 2013 : A case report with germline and somatic genetic analysis 2017 In: Case Reports in Oncology. - : S. Karger AG. - 1662-6575. ; 10:3, s. 1006-1012 Journal article (peer-reviewed)abstract The number of patients with multiple primary malignancies has been increasing steadily in recent years. In the present study, we describe a unique case of an 81-year-old woman with 5 metachronous and synchronous primary malignant neoplasms. The patient was first diagnosed with an endometrium adenocarcinoma in 1997 and a colon adenocarcinoma in 2002. Eleven years after her colon surgery, in 2013, the patient presented with 3 other primary malignancies within a 4-month time span: An invasive malignant melanoma on the lower leg, an invasive mucinous breast carcinoma in the right breast, and a pleomorphic spindle cell sarcoma on the left upper arm. Subsequent routine medical checkups in 2013-2017 revealed no metastases of the primary malignancies. The patient mentioned a familial aggregation of malignant tumors, including 2 sisters with breast cancer and a brother with lung cancer. Interestingly, next-generation sequencing analysis of the patient's blood sample detected no mutations in the BRCA1, BRCA2, TP53, PTEN, CDH1, PALB2, RAD51C, RAD51D, MLH1, MSH2, MSH6, PMS2, EPCAM, APC, MUTYH, STK11, BMPR1A, SMAD4, PTEN, POLE, POLD1, GREM1, and GALNT12 genes. Therefore, whole genome sequencing is warranted to identify cancer-related genetic alterations in this patient with quintuple primary malignancies.
49.	Nyqvist, Jenny, et al. (author) Previously diagnosed multiple primary malignancies in patients with breast carcinoma in Western Sweden between 2007 and 2018. 2020 In: Breast cancer research and treatment. - : Springer Science and Business Media LLC. - 1573-7217 .- 0167-6806. ; 184, s. 221-228 Journal article (peer-reviewed)abstract Multiple primary malignancies (MPMs) caused by breast cancer treatment are well described, but only few studies to date describe which other previous primary malignancies (OPPMs) occur before breast cancer. The purpose of the present study was to evaluate the prevalence of OPPMs in patients with breast cancer between 2007 and 2018 in Western Sweden.Patient selection was performed using both pathology reports at Sahlgrenska University Hospital (Sweden) and the Swedish Cancer Registry. All newly diagnosed breast cancer patients were screened for presence of OPPM.In total, 8031 breast cancer patients were diagnosed at Sahlgrenska University Hospital between 2007 and 2018. The prevalence of breast cancer patients with OPPMs (n=414) increased from on average 2.6% to 8.2% during this 12-year period and ranged from 17 to 59 patients annually.The most striking increase in prevalence was found among the gynecological tumors (endometrium and ovarian adenocarcinomas), malignant melanomas and gastrointestinal malignancies.These findings were validated using data of the Swedish Cancer Registry.The overall survival rates for cancer patients have improved tremendously during the past 40years, in part due to individually tailored therapies and screening programs. Our study revealed an increasing trend of OPPMs in breast cancer patients.
50.	Pettersson, Monica, 1963, et al. (author) Prepared for surgery : Communication in nurses preoperative consultations with patients undergoing surgery for colorectal cancer after a person-centred intervention 2018 In: Journal of Clinical Nursing. - : Blackwell Publishing. - 0962-1067 .- 1365-2702. ; 27:13-14, s. 2904-2916 Journal article (peer-reviewed)abstract Aims and objectivesTo describe preoperative communication after a person‐centred intervention in nurses' consultations with patients undergoing surgery for colorectal cancer.BackgroundPatients all over the world scheduled for surgery are referred to preoperative consultations with healthcare professionals. The goal is to assess the risk of perioperative complications, improving quality of care and enabling patients to be prepared for surgery and recovery. A person‐centred intervention was developed, which consisted of an interactive written patient education material and person‐centred communication.DesignAn explorative quantitative and qualitative study based on 18 audio‐taped transcriptions.MethodsEighteen patients preoperative nursing consultations at three Swedish hospitals were analysed quantitatively regarding structure: words, time, phases, questions, discursive space, and qualitatively: topics and how the person‐centred communication appeared in the consultations.ResultsThe median time for consultations was 27 min (range 13–64 min). The nurses used two‐thirds of the discursive space in the consultations with the patients. The patient education material was used as a support to structure the consultation and discuss sensitive and difficult issues. Seven topics were discussed during the consultation. Two different approaches to communication were identified: Talking with the patient versus Talking to the patient. Talking with the patient (seen as person‐centred communication) was defined as: listening to the narrative and confirming each other, raising difficult topics, seeing each other as persons, building on strengths and resources, preparing for surgery and asking open questions.ConclusionWays of communicating influence how the preoperative consultation develops. Talking with the patient could be seen as person‐centred communication in the preoperative care, and when using this approach, the intervention purpose of person‐centred communication was met.Relevance to clinical practiceEducation in person‐centred communication is important for nurses to improve their skills in performing preoperative consultations.

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