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Pituitary tumors and subsequent treatment with endoscopic transsphenoidal surgery (ETSS) may cause injury to suprasellar structures, causing long-term fatigue and neurocognitive impairment. A method to quantify brain injury after ETSS is not available. In this prospective, exploratory study of patients undergoing ETSS for pituitary tumors, a novel approach to detect possible neuronal damage is presented. Plasma concentrations of brain injury biomarkers (glial fibrillary acidic protein [GFAP], tau, and neurofilament light [NFL]) were measured the day before surgery, immediately after surgery, at day 1 and 5, and at 6 and 12 months after surgery, using enzyme-linked immunosorbent assays. The association between the increase of biomarkers with preoperative tumor extension and postoperative patient-perceived fatigue was evaluated. Suprasellar tumor extension was assessed from MRI scans, and self-perceived fatigue was assessed using the Multidimensional Fatigue Inventory before and 6 months after surgery. Thirty-five patients were included in the analysis. Compared to baseline, GFAP showed a maximal increase at day 1 after surgery (p = 0.0005), tau peaked postoperatively on the day of surgery (p = 0.019), and NFL reached its maximum at day 5 after surgery (p < 0.0001). The increase in GFAP correlated with preoperative chiasmal compression (p = 0.020). The increase in tau was correlated with preoperative chiasmal (p = 0.011) and hypothalamus compression (p = 0.016), and fatigue score 6 months after surgery (p = 0.016). In conclusion, the concentrations of brain injury biomarkers in blood increased after ETSS for pituitary tumors. The results indicate that postoperative plasma GFAP and tau might reflect astroglial and neuronal damage after ETSS.

Background Person-centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long-term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person-Centred Care (GPCC). Objective The present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person-centredness provided by the GPCC. Design Cross-sectional study. Setting and participants A questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016. Main outcome measures Theoretical frameworks, contexts of studies, person-centred ethic, and outcome measures. Results Most of the interventions were based on the same ethical assumptions for person-centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi-experimental. Hospital in- and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident. Conclusion The frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible. Patient or public contributions Patients or the public made no direct contributions, although most of the studied projects included such initiatives.

Objective Experiences and need of support during surgery and start of replacement therapy in patients with pituitary tumours are highly unknown. This study aimed at exploring patient experiences during pre- and postoperative care and recovery after pituitary surgery in patients with a pituitary tumour. Methods Within a qualitative study design, 16 consecutive patients who underwent surgery for pituitary tumours were repeatedly interviewed. In total, 42 interviews were performed before and after surgery. Analysis was performed using qualitative interpretation. Results Suffering a pituitary tumour was overwhelming for many patients and struggling with existential issues was common. Patients expressed loneliness and vulnerability before and after surgery. How professionals handled information in connection with diagnosis greatly affected the patients. Other patients with the same diagnosis were experienced as the greatest support. Normalisation of bodily symptoms and relationships with others were reported during postoperative recovery. However, a fear that the tumour would return was present. Conclusions Patients with pituitary tumours need structured support, including peer support, which acknowledges physical, cognitive as well as emotional and existential concerns. Information related to diagnosis and surgery should be adapted in relation to the loneliness and the existential seriousness of the situation. Care and support for patients with pituitary tumours should preferably be organised based on continuity and an unbroken care pathway from the first pre-operative evaluation through to postoperative care and the start of a life-long endocrine treatment and tumour surveillance.

Purpose: To examine whether patients’ experiences could be improved during colonoscopy by designing the examination room to include a digital screen showing calm nature films. Background: Colonoscopy is the gold standard for examination of the large intestine and the rectum. Around 50% of individuals invited for colorectal cancer screening choose to refrain from the screening due to fear and anxiety. It is therefore important to improve patients’ comfort during the procedure. Method: One of the four endoscopy rooms was rebuilt to include a large digital screen showing calm nature films. Patients were randomized to intervention (i.e., the room showing films) or control. During the colonoscopy, pulse and oxygen saturation were measured and the patients graded the intensity of pain and anxiety. Blood samples were taken regularly during the examination and were analyzed for glucose, cortisol, and prolactin. Results: The presence of calm nature films during colonoscopy decreased the release of cortisol, increased prolactin levels, and enhanced oxygen saturation. These effects were more apparent in patients who were unfamiliar with the procedure and the environment, patients who underwent the examination without analgesics or sedation, and patients whose examination procedure was relatively difficult and took a long time. Conclusions: The intervention described in this study is easy to implement and might help improve the patient experience during colonoscopy. However, this study was performed in a single health institution, and more studies are needed to further explore the role of film interventions in endoscopic and other medical procedures.

Enjoying cultural events such as musical performances is a human right as well as contributing to quality of life. However, older people who live in nursing homes are often excluded from such events. Music interventions for older people with cognitive decline have been shown to have a positive effect on their mood and behaviour, particularly in terms of anxiety, agitation and irritability.To investigate the effect of musical interventions in nursing homes from the perspective of older people, their relatives and caregivers.Musical performances were held at 11 nursing homes in Sweden. These performances were followed by semi-structured interviews that aimed to capture the experiences of the older people, their relatives and caregivers. The interviews were analysed by qualitative thematic analysis.Four relational themes were generated from the analysis: music enhances well-being for the body and soul, music evokes emotions and a 'spark of life', music adds a 'silver lining' to everyday life, and music inspires a journey of the imagination through time and space.The music concerts had a positive effect on older people, their relatives and caregivers. Providing cultural encounters in nursing homes is an important caring intervention.

Objectives Despite the limited invasiveness of endoscopic transsphenoidal surgery (ETSS), some degree of nasal structure destruction is unavoidable. Our objective was to evaluate sinonasal morbidity and self-reported health before and 6 months after ETSS for pituitary tumors, and to identify possible predictive factors for deterioration in sinonasal health. Design Prospective observational cohort study. Setting University tertiary referral hospital. Participants Totally 109 consecutive adult patients undergoing ETSS for pituitary tumors between 2015 and 2019. Main Outcome Measures Sinonasal symptoms and self-reported health before and 6 months after ETSS, assessed by the Sinonasal Outcome Test (SNOT-22) and the EQ-5D questionnaire. Predictive factors for postoperative deterioration in sinonasal symptoms. Results The overall SNOT-22 score did not change, but the score of the rhinologic domain of SNOT-22 worsened from 6.0 ± 5.9 before to 8.0 ± 7.4 6 months after surgery (p = 0.011). The EQ-5D visual analog scale improved from 64.0 ± 22.9 before to 71.1 ± 18.7 6 months after surgery (p = 0.00088). Univariate and multivariable regression analyses showed that prior sinonasal surgery was associated with a significant worsening in rhinologic symptoms 6 months after surgery (p = 0.046 and p = 0.020, respectively). Conclusions Although self-reported overall health improved, significant deterioration of rhinologic symptoms was seen 6 months after ETSS. This information is important for preoperative patient counselling. Further refinement of the surgical technique and follow-up strategies to reduce postoperative sinonasal morbidity could be of value, especially in patients who have undergone prior sinonasal surgery.

Objective Headache is a common symptom among patients with pituitary tumors, as it is in the general population. The aim of the study was to investigate headache as a symptom in patients with pituitary tumors before and 6 months after endoscopic transsphenoidal surgery (TSS). Design This is a prospective observational cohort study. Setting This study was conducted at university tertiary referral hospital. Participants A total of 110 adult patients underwent endoscopic TSS for pituitary tumors. Main Outcome Measures The Migraine Disability Assessment (MIDAS) questionnaire was used before and 6 months after surgery for the assessment of headache. Clinical variables with potential influence on headache were analyzed. Results Sixty-eight (62%) patients experienced headaches at least once during the 3 months before surgery. Thirty (27%) patients reported disabling headache before surgery, with younger age being an independent associated factor (p Conclusion In this prospective study, the results show that disabling headache improves following endoscopic TSS in a subset of patients with pituitary tumors. However, no predictive factors for improvement could be identified.

The co-creation and sharing of documentation of person-centered care is important, but challenging in clinical practice. Online access to health records is considered essential to increase patient participation and empowerment in person-centered care provision. The aims of this study were (1) to identify the extent of person-centered content in medical inpatient records and discharge letters; (2) to describe the characteristics of the language and rhetoric used in discharge letters. This was a concurrent, mixed-methods study involving a deductive, quantitative analysis of person-centered content in 69 Patient Accessible Electronic Health Records from patients with pituitary tumors, and an iterative, qualitative language analysis of a nested sample of 57 discharge letters. Both the content and language of inpatient records were mostly patient-centered. Records were concerned with the documentation of symptoms and medical and care interventions. There was little person-centered documentation of patients' preferences, wishes and needs, and shared decision-making. In the discharge letters, written for the patients, some physicians had attempted to write in a person-centered way, using plain language and a narrative. However, most wrote in a style that was reflective of their discourse community, using abbreviations and medical terms. Established norms for documentation in healthcare are a barrier to person-centered documentation. Patients' needs and preferences about documentation should be explored to increase understanding of how person-centered documentation can be achieved in clinical practice.

This paper explores essential characteristics of current nursing practice from the perspectives of clinically experienced registered nurses in various fields of health care in Sweden. Nursing practice has been the subject of much debate in the past and because of its complexity as well as continuous changes in society it is important to continue the debate. A qualitative study, including 16 group interviews with altogether 74 participants, was conducted. Nursing practice was viewed as a multifaceted field. The participants struggled to define nursing but were able to describe it using concrete examples. The analysis, using interpretive description, identified current practice as essentially consisting of: ‘A practice pervaded by comprehensive responsibility’, ‘A practice that recognises a patient's unique needs’, ‘A practice based on multifaceted knowledge’ and ‘A practice that mediates between traditional values and changing demands’. Current nursing practice can be understood as striving to be in close proximity to the patient, but in tension with pervasive requirements and societal changes. Going forward, it is necessary to continue to reflect on and discuss the nature of nursing practice in an interprofessional context. Studies from primary and home care are also needed to broaden the understanding of nursing practice.

Background Patients with pituitary tumors often live with lifelong consequences of their disease. Treatment options include surgery, radiotherapy, and medical therapy. Symptoms associated with the tumor or its treatment affect several areas of life. Patients need to adhere to long-term contact with both specialist and general health care providers due to the disease, complex treatments, and associated morbidity. The first year after pituitary surgery constitutes an important time period, with medical evaluations after surgery and decisions on hormonal substitution. The development and evaluation of extended patient support during this time are limited. Objective The aim of this study is to evaluate whether support within a person-centered care practice increases wellbeing for patients with pituitary tumors. Our main hypothesis is that the extended support will result in increased psychological wellbeing compared with the support given within standard of care. Secondary objectives are to evaluate whether the extended support, compared with standard care, will result in (1) better health status, (2) less fatigue, (3) higher satisfaction with care, (4) higher self-efficacy, (5) increased person-centered content in care documentation, and (6) sustained patient safety. Methods Within a quasiexperimental design, patients diagnosed with a pituitary tumor planned for neurosurgery are consecutively included in a pretest-posttest study performed at a specialist endocrine clinic. The control group receives standard of care after surgery, and the interventional group receives structured patient support for 1 year after surgery based on person-centeredness covering self-management support, accessibility, and continuity. A total of 90 patients are targeted for each group. Results Recruitment into the control group was performed between Q3 2015 and Q4 2017. Recruitment into the intervention group started in Q4 2017 and is ongoing until Q4 2020. The study is conducted according to the Declaration of Helsinki, and the protocol has received approval from a regional ethical review board. Conclusions This study entails an extensive intervention constructed in collaboration between clinicians, patients, and researchers that acknowledges accessibility, continuity, and self-management support within person-centeredness. The study has the potential to compare standard care to person-centered practice adapted specifically for patients with pituitary tumors and evaluated with a combination of patient-reported outcomes and patient-reported experience measures. Following the results, the person-centered practice may also become a useful model to further develop and explore person-centered care for patients with other rare, lifelong conditions. Trial Registration Researchweb.org. https://www.researchweb.org/is/sverige/project/161671 International Registered Report Identifier (IRRID) DERR1-10.2196/17697

The aim of this study was to evaluate effects of person-centred inpatient care on care processes in terms of satisfaction with care and person-centred content in medical records, and to evaluate effects on self-reported health and self-efficacy.Internal medicine inpatient care is complex, covering patients varying in age, medical conditions, health status, and other aspects. There has been limited research on the impact of person-centred care (PCC) on satisfaction with care and health outcomes in internal medicine care environments regardless of diagnosis and care pathway.A quasi-experimental study with pre- and postmeasurements.Adult patients admitted to an internal medicine inpatient unit were consecutively included over 16 weeks in 2014 and 24 weeks in 2015-2016. Data were collected before a person-centred inpatient care intervention (N = 204) and 12 months after the intervention was implemented (N = 177). Data on satisfaction with care and self-reported health were collected at discharge and medical records were reviewed. The intervention included systematically applied person-centred assessment, health plans, and persistent PCC.After the intervention, patients rated higher satisfaction with care regarding essential components of PCC and more patients had received effective pain relief. There were no differences in information on self-care or medications, self-rated health, or self-efficacy.Care focused on the foundations of person-centredness seems to enhance both patients' perceptions of satisfaction and symptom management. Situational aspects such as care pathways should be considered when implementing person-centred inpatient care.CLINICALTRIALS.NCT03725813.目的;: 本研究在于从医疗记录中护理满意度和以人为本的内容方面评估以人为本的住院护理对护理过程的影响,并评估对自我报告式健康和自我效能的影响。 背景;: 内科医学住院护理是复杂的,涵盖不同年龄、医疗条件、健康状况等方面的患者。无论诊断和护理途径如何,关于以人为本型护理(简称为“PCC”)影响内科医学护理环境中护理满意度和健康结果的研究一直有限。 设计: 一项带有前后测量结果的准实验研究。 方法: 2014年和2015至2016年分别连续性16周和24周纳入了内科医学住院患者。在以人为本型住院护理干预前(204例)和干预实施后12个月(177例)收集了数据。出院时收集了关于护理满意度和自我报告式健康的数据,并审查了医疗记录。干预措施包括系统应用性以人为本型评估、健康计划和持续的以人为本型护理。 结果: 干预后,患者对以人为本型护理基本组成部分的护理满意度较高,更多患者获得了有效的疼痛缓解。关于自我护理或药物治疗、自测健康或自我效能的信息之间没有差异。 结论: 注重以人为本理论根据的护理似乎增强了患者对满意度和症状管理的认知。实施以人为本的住院护理时,应考虑护理路径等情境方面。 试验注册: ClinicalTrials.gov,注册号:NCT03725813.

Increased physical activity has been tested among patients with irritable bowel syndrome (IBS) in a randomized trial which demonstrated improvement in gastrointestinal (GI) symptoms. The patients' experiences of the effects of physical activity on IBS symptoms are unknown. This knowledge is necessary to enable suitable support from health care professionals. The aim of this study was therefore to explore patients' experiences of the effects of physical activity.Deep interviews were conducted with 15 patients (10 women and 5 men) aged 31-78 years. Their IBS had lasted for 10-57 years. The transcribed interviews were analyzed through a qualitative content analysis.The analysis of the material revealed three themes; GI symptoms, extra-intestinal symptoms, and quality of life (QOL). In relation to GI symptoms, the patients discussed how physical activity affected these symptoms and how they used physical activity to normalize and control their GI symptoms. Extra-intestinal symptoms were also affected by physical activity, and the patients described how they experienced a general bodily wellbeing as well as improved mood and energy in relation to physical activity. In terms of QOL, the patients discussed their perspectives on physical activity as giving them achievements, being pleasurable, and being strengthening of the self.Our results emphasize the importance of taking into account the patient's experiences of the effects of physical activity when coaching patients with IBS to be physically active. Using a person-centred approach incorporating, the patient's own experiences and resources is the key to successfully promoting physical activity in the clinic.

BACKGROUND Patients with pituitary tumors often live with lifelong consequences of their disease. Treatment options include surgery, radiotherapy, and medical therapy. Symptoms associated with the tumor or its treatment affect several areas of life. Patients need to adhere to long-term contact with both specialist and general health care providers due to the disease, complex treatments, and associated morbidity. The first year after pituitary surgery constitutes an important time period, with medical evaluations after surgery and decisions on hormonal substitution. The development and evaluation of extended patient support during this time are limited. OBJECTIVE The aim of this study is to evaluate whether support within a person-centered care practice increases wellbeing for patients with pituitary tumors. Our main hypothesis is that the extended support will result in increased psychological wellbeing compared with the support given within standard of care. Secondary objectives are to evaluate whether the extended support, compared with standard care, will result in (1) better health status, (2) less fatigue, (3) higher satisfaction with care, (4) higher self-efficacy, (5) increased person-centered content in care documentation, and (6) sustained patient safety. METHODS Within a quasiexperimental design, patients diagnosed with a pituitary tumor planned for neurosurgery are consecutively included in a pretest-posttest study performed at a specialist endocrine clinic. The control group receives standard of care after surgery, and the interventional group receives structured patient support for 1 year after surgery based on person-centeredness covering self-management support, accessibility, and continuity. A total of 90 patients are targeted for each group. RESULTS Recruitment into the control group was performed between Q3 2015 and Q4 2017. Recruitment into the intervention group started in Q4 2017 and is ongoing until Q4 2020. The study is conducted according to the Declaration of Helsinki, and the protocol has received approval from a regional ethical review board. CONCLUSIONS This study entails an extensive intervention constructed in collaboration between clinicians, patients, and researchers that acknowledges accessibility, continuity, and self-management support within person-centeredness. The study has the potential to compare standard care to person-centered practice adapted specifically for patients with pituitary tumors and evaluated with a combination of patient-reported outcomes and patient-reported experience measures. Following the results, the person-centered practice may also become a useful model to further develop and explore person-centered care for patients with other rare, lifelong conditions. CLINICALTRIAL Researchweb.org. https://www.researchweb.org/is/sverige/project/161671 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/17697

Irritable bowel syndrome is a common and often chronic functional bowel disorder that can cause severe disruption of daily functioning in those affected, with subsequent high healthcare utilization and work absenteeism. Nurses represent an underutilized group in the current management of irritable bowel syndrome. The aim of this study was to systematically develop a person-centered support intervention in irritable bowel syndrome and evaluate this in a pilot study. The development followed the revised framework for complex interventions from the Medical Research Council and involved literature reviews and multiprofessional expert groups. The intervention was then tested in a pilot study including 17 patients and evaluated through validated questionnaires measuring irritable bowel syndrome symptom severity, gastrointestinal-specific anxiety, and self-efficacy as well as through interviews. There was a significant improvement in irritable bowel syndrome symptom severity between baseline and follow-up, but not for self-efficacy or gastrointestinal-specific anxiety. The patients' perceptions of participating in the intervention were positive and induced a learning process; they were able to form a supportive relationship with the nurse and their ability to self-manage improved. The promising results from this small pilot study in terms of feasibility, potential efficacy, and the patients' positive feedback make this intervention a suitable candidate for a larger controlled trial.

Background: A common and debilitating symptom in patients with chronic liver disease is fatigue (CLD). Muscle dysfunction has been suggested to be a key mechanism of fatigue in CLD.Objectiv...

Aims and objectives To evaluate aspects of patient safety before and after a person-centred (PC) inpatient care intervention. Background Transitioning from disease-centred to person-centred care requires great effort but can improve patient safety. Design A quasi-experimental study with data collection preceding and 12 months after a PC inpatient care intervention. Methods The study consecutively recruited adult patients (2014, n = 263; 2015/2016, n = 221) admitted to an inpatient care unit. The patients reported experiences of care at discharge and their perceived pain at admission and discharge. Medical records were reviewed to gather data on medications, planned care and clinical observations. The study is reported according to TREND guidelines. Results At discharge, patients receiving PC inpatient care reported competent medical-technical care. Patients receiving PC inpatient care reported more effective pain relief. Updated prescribed medications at the ward were maintained, and patients were made aware of planned medical care to higher extent during PC inpatient care. The assessment of pulse and body temperature was maintained, but fewer elective care patients had their blood pressure taken during PC inpatient care. Weight assessment was not prioritised during usual or PC inpatient care. Conclusions Patients receiving PC inpatient care reported that they were given the best possible care and had less pain at discharge. The PC inpatient care included improved documentation and communication of planned medical care to the patients. Vital signs were more frequently recorded for patients admitted for acute care than patients admitted for elective care. PC inpatient care had no effect on frequency of weight measurements. Relevance to clinical practice PC inpatient care seems beneficial for the patients. Aspects of patient safety such as prescribed medications were maintained, and PC inpatient care seems to enhance the continuity of care. Inpatient clinical observations need further evaluation as healthcare transitions from disease-centred to person-centred care.

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 dat ...

A key area for consideration is determining how optimal conditions for learning can be created. Higher education in nursing aims to prepare students to develop their capabilities to become independent professionals. The aim of this study was to evaluate the effects of sequencing clinical practice prior to theoretical studies on student's experiences of self-directed learning readiness and students' approach to learning in the second year of a three-year undergraduate study program in nursing. 123 nursing students was included in the study and divided in two groups. In group A (n = 60) clinical practice preceded theoretical studies. In group (n = 63) theoretical studies preceded clinical practice. Learning readiness was measured using the Directed Learning Readiness Scale for Nursing Education (SDLRSNE), and learning process was measured using the revised two-factor version of the Study Process Questionnaire (R-SPQ-2F). Students were also asked to write down their personal reflections throughout the course. By using a mixed method design, the qualitative component focused on the students' personal experiences in relation to the sequencing of theoretical studies and clinical practice. The quantitative component provided information about learning readiness before and after the intervention. Our findings confirm that students are sensitive and adaptable to their learning contexts, and that the sequencing of courses is subordinate to a pedagogical style enhancing students' deep learning approaches, which needs to be incorporated in the development of undergraduate nursing programs.

Aims and objectives To explore experiences of physical activity in patients with Irritable bowel syndrome. Background Irritable bowel syndrome is a common functional bowel disorder. The knowledge of physical activity in Irritable bowel syndrome is limited and has not been qualitatively studied before. Methods We adopted a qualitative approach and a hermeneutic analysis. Fifteen patients with Irritable bowel syndrome (10 women) with a median age of 52 (31-78) years were interviewed. The Consolidated criteria for reporting qualitative research was used. Results Two themes emerged from the data: requirements of physical activity and capability for physical activity. The first of these consisted of five subthemes: add additional value, enable transportation, maintain health, cultivate interests and give a feeling of belonging. These qualities were the patients' requirements of physical activity and comprised the patients' motives and reasons for being physically active. The second consisted of four subthemes: life situation, earlier experiences, self-image, and symptom variation and described the possibility and resources to be physically active in everyday life. The patients made active choices to adjust their physical activity in terms of type, intensity and amount. The two main themes affect each other reciprocally. Conclusions The requirements of and capabilities for physical activity should be taken into account when giving advice to patients on physical activity. Physical activity for a person with Irritable bowel syndrome is about finding activities which meet the patient's individual requirements of and capability for physical activity. Relevance to clinical practice This qualitative study on the experience pf physical activity in Irritable bowel syndrome provides knowledge to facilitate promoting physical activity among patients suffering from Irritable bowel syndrome. This knowledge can be used in other diagnosis.

Background To promote patients' ability to regain health during hospitalisation, care should not only focus on disease but also on how patients perceive health. There is a lack of studies on how patients admitted for inpatients care perceive their health. Aim To investigate self-reported health at admission and discharge perceived by patients admitted to an internal medicine ward; and, further, to explore the most distressing concerns at admission and discharge and the factors that influence low health status at discharge. Designs and methods One hundred and forty-seven patients completed EQ-5D and an open-ended question 'What concerns distress you the most?' at admission and discharge. Descriptive, parametric and nonparametric analyses were used. Subset analyses were performed between three groups based on health change. Factors influencing low health status at discharge were tested in a logistic regression. To analyse most distressing concerns, an inductive content analysis was performed. Results There was a significant increase in self-rated health for patients with gastrointestinal disorders. At discharge, 50% was identified with improved and 30% with unaltered health. Twenty per cent reported a significant deterioration of health and had the highest frequency of severe problems in all EQ-5D dimensions. Several patients left hospital with distressing symptoms, uncertainty and concerns that had persisted throughout their hospitalisation. Vulnerable patients were characterised by an acute admission, unemployment and longer hospitalisation. Low EQ VAS at admission predicted poor health at discharge. Conclusions Many patients had low health status at admission. For some, this did not improve during hospital stay, and for some, it got worse. Our findings highlight a group, whose care can be improved, through information, support and follow-up routines within and outside the hospital. Identifying these patients, efforts to better support patients in their self-care, including relief of pain and worries, at discharge can be established.

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.

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.

Aim The aim of the study was to explore the impact of irritable bowel syndrome on daily life from a gender perspective. Background Irritable bowel syndrome is a common functional disorder, characterized by abdominal pain, diarrhoea and/or constipation. Sufferers experience negative emotions due to unpredictable symptoms and sometimes feel trivialized by healthcare professionals. The sufferers' experience of living with this disorder has never been explored from a gender perspective. Design A qualitative, interpretative method was used. Methods A qualitative, hermeneutic method was applied. Interviews were conducted with 19 patients in 2011 and analysed in a constructionist gender framework. Constructionist gender theory views gender and identity as cultural constructs that develop through interplay between the individual and his/her social context and cultural norms. Findings The main theme to emerge from the interviews was as follows: ‘A normative framework of femaleness and maleness leads to suffering for persons with irritable bowel syndrome’. This consists of three interwoven themes: ‘Being forced to abandon gender illusions’; ‘Being forced to transcend taboos’ and ‘Reinforced suffering in healthcare encounters’. Men demonstrated masculinity by stressing the importance of being solid family providers while women spoke of nurturing and relational responsibilities in line with traditional notions of femininity. Conclusion The experience of living with irritable bowel syndrome differs between men and women due to differing societal expectations, life situation and the everyday construction of gender identities. Gender stereotyping by healthcare professionals perpetuates rather than alleviates the suffering experienced by men and women with irritable bowel syndrome. In healthcare encounters, women risk being trivialized and men risk being overlooked due to the ‘female health concern’ label attached to irritable bowel syndrome.

The aim of this study was to explore experiences of undergoing a diagnostic workup in patients with irritable bowel syndrome (IBS) at a unit for functional gastrointestinal disorders. Research has been sparse in addressing such experiences and the impact on well-being. Patients with IBS were invited to perform a workup of gastrointestinal tests. Of 120 patients who completed the tests, 20 were invited for an interview. Analysis of interviews was conducted through interpretative phenomenological analysis. One master theme emerged: validation of IBS experience inferred from three subthemes: the duality of suffering in IBS, coping with inflicted discomfort and pain, and capacity for resilience.Patients reported long-term suffering from symptoms including poor management within the healthcare organization. Despite inconvenience associated with the tests, patients expressed appreciation for professional attributes such as attentiveness that were perceived as a sense of being cared for and seen as a "person." During the workup, patients acquired greater knowledge of what IBS means, including knowledge about their own body functions and experienced relief that symptoms were not caused by any "dangerous" disease. Validation of IBS experience surfaced in the data implying that in such context, patients with IBS appear to find personal solutions to cope with everyday experiences and enhance autonomy.

To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients.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.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.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.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.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.

Aims and objectives This study aimed to explore patients’ experiences of healthcare encounters in severe irritable bowel syndrome. Background Irritable bowel syndrome is a common functional disorder with symptoms such as abdominal pain and disturbed bowel habits, the cause of which is not completely known. Treatments options are limited, and healthcare encounters in irritable bowel syndrome have been described as unsatisfying and frustrating for both patients and professional healthcare providers. Furthermore, the influence of power on healthcare encounters has long been recognised, especially regarding the disadvantaged position of those suffering from functional illness which cannot be identified by commonly used tests or investigations. Methods We interviewed 10 patients during 2014, all attending an outpatient clinic and suffering from severe irritable bowel syndrome. Relying on narrative and feminist theory, we explored how they actively negotiate professional discourse communicated to them in the clinical encounter. Results The patients’ experiences of healthcare encounters in irritable bowel syndrome were mostly described as negative, and often induced feelings of confusion and self-doubt. Positive encounters were described as being listened to, believed and taken seriously. Narrators found it especially problematic when healthcare professionals described irritable bowel syndrome as a minor disorder with primarily stress or psychological aetiology and put the responsibility for recovery onto the patient. Patients’ actively negotiated such professional discourse by presenting a counternarrative describing their own suffering and strengths, experienced healthcare shortcomings and possible organic aetiology of irritable bowel syndrome. Conclusions Patients suffering from severe irritable bowel syndrome described how they often felt a need to protect their positive identities in the face of trivialisation and disbelief by healthcare professionals. Relevance to clinical practice A deepened understanding of patients’ experiences of healthcare encounters in irritable bowel syndrome could enable more helpful and supporting interventions by healthcare professionals.

Living with chronic heart failure (CHF) often involves lifelong contact with health care, more or less frequently, depending on fluctuating health-generating disruptions in everyday life. To reduce the influence on continuity in life, health-care professionals should preferably focus on supporting patients in managing their daily lives, based on their perspective. The aim of this study was to describe how the interaction in health-care encounters contributes to either continuity or discontinuity in the daily life for persons with CHF. Interviews with 18 participants were carried out, using the grounded theory method, through data collection and analysis. Two core concepts were constructed from data which reveal a model that illuminates the characteristics of the encounters, the actions of health-care professionals and the normative discourse. Patient-centred agenda consists of the categories: “Experiencing a subordinate approach,” “Objectifying during the encounter” and “Expected to be compliant.” This describes how health-care professionals enhance discontinuity in daily life by using a paternalistic approach in the encounter. Person-centred agenda consists of the categories: “Experiencing an empowering approach,” “Person-centredness during the encounter” and “Expected to be capable.” It describes how participants perceive that health-care professionals enable them to deal with everyday life which enhances continuity. The findings highlight the importance of health-care professionals’ attitudes and communication in encounters with patients. Health care must be designed to support and promote patients’ own strategic thinking by strengthening their self-image to enhance continuity in everyday life. The experience of discontinuity is based on the prevailing health-care culture which focuses on disease and medical treatment and regards it as superior to the illness experience in an everyday life context. We therefore strongly suggest a paradigm shift in the health-care organisation and culture in order to support the patients in their efforts to live a meaningful, rich life, in spite of the chronic illness CHF.Key words: Chronic disease, heart failure, illness, patient perspective, continuity, person-centred care, grounded theory method(Published: 1 July 2015)Citation: Int J Qualitative Stud Health Well-being 2015, 10: 27775 - http://dx.doi.org/10.3402/qhw.v10.27775

Living with a chronic disease like chronic heart failure (CHF) results in disruptions, losses, and setbacks in the participants’ daily lives that affect health and well-being. By using grounded theory method, we illuminate whether persons with CHF experience discontinuity in life and, if so, what helps them to preserve and strengthen continuity in their daily lives. Thirteen individual interviews and one group interview with five participants, aged 62 to 88 years, were carried out. Through data collection and data analysis, we constructed three concepts that make up a model illustrating the participants’ experiences in daily life in relation to corporeality, temporality, and identity: experiences of discontinuity, recapturing approaches, and reconciliation. The first concept, experiences of discontinuity, was constructed from the following categories: the alienated body, the disrupted time, and the threatened self. The second concept, recapturing approaches, consists of categories with continuity creative constructions: repossessing the body, maintaining a façade, seizing the day, restoring the balance of time, and preserving self. These actions are intended to overcome problems and master changes in order to maintain balance in daily life through constructions that recreate normality and predictability. The third concept, reconciliation, was constructed from three categories: feel normal, set to adjust, and be positioned. These categories describe how the participants minimize their experiences of discontinuity by recapturing approaches in order to reconcile with various changes and maintain continuity in daily life. Our findings provide a fresh perspective on continuity that may contribute to the development of significant interventions in continuity of care for persons with CHF. However, continuity requires that healthcare systems support each patient’s ability to manage change, reorientation, and adjustment to the new situation in order to make it easier for the patient to create and continue living their daily lives as they desire.Key words: Chronic disease, heart failure, life expectations, continuity, grounded theory method(Published: 28 December 2015)Citation: Int J Qualitative Stud Health Well-being 2015, 10: 29872 - http://dx.doi.org/10.3402/qhw.v10.29872

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.

To explore patients' most distressing concerns during a hospital stay.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.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.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.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.

Through their formal mandate, position and authority, managers are responsible for managing everyday work in Emergency Departments (EDs) as well as striving for excellence and dealing with the individual needs of practitioners and patients. The aim of the present study is to explore managers' experiences of managing everyday work in Swedish EDs.A qualitative and exploratory design has been used in this study. Seven managers were interviewed at two EDs. Data was analysed using qualitative content analysis with focus on latent content.Managers experience everyday work in the ED as lifesaving work. One of the characteristics of their approach to everyday work is their capability for rapidly identifying patients with life-threatening conditions and for treating them accordingly. The practitioners are on stand-by in order to deal with unexpected situations. This implies having to spend time waiting for the physicians' decisions. Management is characterised by a command and control approach. The managers experience difficulties in meeting the expectations of their staff. They strive to be proactive but instead they become reactive since the prevailing medical, bureaucratic and production-orientated systems constrain them.The managers demonstrate full compliance with the organisational systems. This threatens to reduce their freedom of action and influences the way they perform their managerial duties within and outside the EDs.

Irritable bowel syndrome (IBS) is a chronic, disabling and functional gastrointestinal disorder. Effective treatments are lacking. Self-care and coping with symptoms are considered important but little is known about what patients with IBS actually do to manage their illness. The aim of this study was to explore how patients with long-term experience of living with IBS perceive their situation and manage illness in daily life.The study adopted a qualitative approach - an interpretative phenomenological analysis. Twenty patients with IBS (16 women) with a mean age of 46 (27-74) years were interviewed. The mean IBS duration was 24 (7-65) years.Two themes emerged from the analysis: Healed but not cured and Take control of daily life. Healed but not cured is about mastering IBS. Even though the patients feel there has been an improvement, their abdomen is constantly present. The patients live with intermittent interaction between well-being and illness and construct explanations for the cause of the IBS symptoms. Taking control of daily life is about the activities the patients perform to master IBS symptoms: self-centredness, disciplined self-care, control over daily routines and finding social support.These results suggest that the negative impact of IBS on daily life can be reduced. Over time, the patients had found effective strategies for symptom improvement, although this is a long-term learning process. The healthcare system could be more effective in supporting patients to find solutions to problems caused by IBS that are consistent with person-centred care and could be adopted as part of different supportive/educational interventions.

The task of emergency departments (EDs) is to provide safe emergency healthcare while adopting a caring, cost-effective approach. Patients attending EDs have different medical and caring needs and it is assumed that practitioners have the requisite competencies to meet those needs. The aim of the present study is to explore what kind of competencies practitioners and managers describe as necessary for the practitioners to perform their everyday work in EDs.This study used a qualitative, exploratory design. Interviews were conducted in two EDs. Data were analysed using inductive content analysis.The competence focus in everyday work in EDs is on emergency and life-saving actions. There is a polarisation between medical and caring competencies. There is also tension between professional groups in EDs as well as hierarchical boundaries that influence the ability to develop competencies in everyday work. Medical competencies are valued more and caring competencies are subsequently downgraded. A medical approach to competencies consolidates the view of necessary competencies in everyday work in EDs.The study shows that the competencies that are valued consolidate the prevailing medical paradigm. There is a traditional, one-sided approach to competencies, a hierarchical distinction between professional groups and unclear occupational functions.

Aims and objectives To identify person-centred care as an intervention in controlled trials, where patients had been involved as a partner, and to describe the outcomes of these studies. Background The notion of person-centred care asserts that patients are persons and partners in care and should not be reduced to their disease alone. Design A systematic literature review. Method Searches were undertaken in the databases PUBMED and CINAHL. The inclusion criteria were that person-centred care as an intervention was described as a partnership between the caregiver and the patient, and that the studies were randomised controlled trials or quasi-experimental designs. The studies were analysed based on methodology, context and type of intervention, outcomes and effects of the interventions. Eleven trials fulfilled the inclusion criteria. Results The studies were carried out in a variety of contexts with diverse outcomes. Person-centred care as an intervention was shown to be successful in eight of the studies. The internal and external validity in the studies were generally good. However, as regards the precision of the studies there was a wide variation. Conclusions The value and efficacy of person-centred care as an intervention have only been studied to a limited extent. Methodological problems in trial design and execution could account for the general lack of research on person-centred care. Evidence that person-centred care is effective is insufficient, more stringent studies are needed. Relevance to clinical practice The results suggest that person-centred care may lead to significant improvements, but the implementation and relevant effects needs to be assessed in more studies.