| 1. |
- Jakobsson, Sofie, 1968, et al.
(författare)
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Extended Support Within a Person-Centered Practice After Surgery for Patients With Pituitary Tumors: Protocol for a Quasiexperimental Study.
- 2020
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Ingår i: JMIR research protocols. - : JMIR Publications Inc.. - 1929-0748. ; 9:7
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Tidskriftsartikel (refereegranskat)abstract
- 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.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.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.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.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.Researchweb.org. https://www.researchweb.org/is/sverige/project/161671.DERR1-10.2196/17697.
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| 2. |
- Jakobsson, Sofie, 1968, et al.
(författare)
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Patient safety before and after implementing person-centred inpatient care - A quasi-experimental study.
- 2020
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Ingår i: Journal of clinical nursing. - : Wiley. - 1365-2702 .- 0962-1067. ; 29:3-4, s. 602-612
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Tidskriftsartikel (refereegranskat)abstract
- To evaluate aspects of patient safety before and after a person-centred (PC) inpatient care intervention.Transitioning from disease-centred to person-centred care requires great effort but can improve patient safety.A quasi-experimental study with data collection preceding and 12months after a PC inpatient care intervention.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.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.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.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.
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| 3. |
- Jakobsson, Sofie, 1968, et al.
(författare)
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Person-centred inpatient care - A quasi-experimental study in an internal medicine context.
- 2019
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Ingår i: Journal of advanced nursing. - : Wiley. - 1365-2648 .- 0309-2402. ; 75:8, s. 1678-1689
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Tidskriftsartikel (refereegranskat)abstract
- 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 16weeks in 2014 and 24weeks in 2015-2016. Data were collected before a person-centred inpatient care intervention (N=204) and 12months 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.
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| 4. |
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| 5. |
- Andersson, Agnes, et al.
(författare)
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Headache Before and After Endoscopic Transsphenoidal Pituitary Tumor Surgery: A Prospective Study
- 2022
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Ingår i: Journal of Neurological Surgery Part B-Skull Base. - : Georg Thieme Verlag KG. - 2193-6331 .- 2193-634X. ; 83:suppl. 2
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Tidskriftsartikel (refereegranskat)abstract
- 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 <0.001). In patients with disabling headache before surgery, the median (interquartile range) MIDAS score improved from 78 (27-168) to 16 (2-145; p =0.049), headache frequency decreased from 45 (20-81) to 14 (4-35) days ( p =0.009), and headache intensity decreased from 6 (5-8) to 5 (4-7) ( p =0.011) after surgery. In total, 16 of the 30 (53%) patients reported a clinically relevant improvement and five (17%) a clinically relevant worsening. Four (5%) patients developed new disabling headache. No predictor for postoperative improvement of headache was identified. 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.
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| 6. |
- Hallén, Tobias, et al.
(författare)
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Circulating brain injury biomarkers increase after endoscopic surgery for pituitary tumors.
- 2021
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Ingår i: Journal of clinical neuroscience : official journal of the Neurosurgical Society of Australasia. - : Elsevier BV. - 1532-2653. ; 89, s. 113-121
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Tidskriftsartikel (refereegranskat)abstract
- 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 12months 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 6months 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 6months 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.
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| 7. |
- Hallén, Tobias, et al.
(författare)
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Sinonasal Symptoms and Self-Reported Health before and after Endoscopic Pituitary Surgery-A Prospective Study
- 2022
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Ingår i: Journal of Neurological Surgery, Part B: Skull Base. - : Georg Thieme Verlag KG. - 2193-634X .- 2193-6331. ; 83:suppl. 2
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Tidskriftsartikel (refereegranskat)abstract
- © 2021 Thieme Medical Publishers, Inc.. All rights reserved. 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.
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| 8. |
- Jakobsson Ung, Eva, 1960, et al.
(författare)
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The pre- and postoperative illness trajectory in patients with pituitary tumours.
- 2019
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Ingår i: Endocrine connections. - 2049-3614. ; 8:7, s. 878-886
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Tidskriftsartikel (refereegranskat)abstract
- Experiences and need of support during surgery and start of replacement therapy in patients with pituitary tumours are highly unknown. This study therefore aimed at exploring patient experiences during pre- and postoperative care and recovery after pituitary surgery in patients with a pituitary tumour.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.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.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 post-operative care and the start of a life-long endocrine treatment and tumour surveillance.
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| 9. |
- Lundin Gurné, Frida, et al.
(författare)
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Striving to be in close proximity to the patient: An interpretive descriptive study of nursing practice from the perspectives of clinically experienced registered nurses
- 2021
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Ingår i: Nursing Inquiry. - : Wiley. - 1320-7881 .- 1440-1800. ; 28:2
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Tidskriftsartikel (refereegranskat)abstract
- © 2020 The Authors. Nursing Inquiry published by John Wiley & Sons Ltd 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.
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| 10. |
- Ragnarsson, Oskar, 1971, et al.
(författare)
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Illness perspectives in patients with primary aldosteronism.
- 2022
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 17:11
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Tidskriftsartikel (refereegranskat)abstract
- The burden of symptoms and treatment in patients with primary aldosteronism (PA), as well as the patients' experience of the health care is sparsely studied. The objectives of this study were to describe symptoms considered to be the most troublesome by patients with PA, and to explore health related worries and expectations following treatment.This was an explorative qualitative study where 25 patients with PA, diagnosed between 2017 and 2019, were included; 13 patients who had undergone adrenalectomy and 12 who were receiving medical treatment. Data was collected during six group interviews and analyzed using a thematic approach.Three main themes were identified: 1) Distress of the past, where the most important issues were struggle to receive a correct diagnosis, impaired well-being and the consumption of a large number of tablets, 2) Satisfaction after receiving a correct diagnosis, both in patients with unilateral and bilateral disease, but also dissatisfaction with lack of information about the disease, and 3) Future concerns, where worries about the long-term effects of PA on health in general dominated.Our findings illustrate several important issues related to PA where improvements in patient care are needed, including actions aiming at shortening the long diagnostic delay, a thorough information to the patients about the disease is of great importance, and that all patients with PA, regardless of treatment, would benefit from a structured long-term follow-up.
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| 11. |
- Dellenborg, Liselott (Lisen), 1966, et al.
(författare)
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Perspectives on Sexuality Among Patients with Hypopituitarism: Broadening the Medical Focus on Sexual Function to Include Sexual Wellbeing
- 2020
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Ingår i: Sexuality and Disability. - : Springer Science and Business Media LLC. - 0146-1044 .- 1573-6717. ; 38:3, s. 515-532
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Tidskriftsartikel (refereegranskat)abstract
- Hypopituitarism means a partial or complete inability to produce pituitary hormones, including those regulating gonadal function. The condition therefore leads to hormone deficiencies that may affect sexuality in various ways. This study aimed to explore patients' own experiences of hypopituitarism in relation to sexuality, and it is based on interviews with 19 men and women. A qualitative methodology inspired by Gadamer's philosophical hermeneutics was used. Analysis revealed that current healthcare practices, which focus primarily on sexual functioning, fail to address patients' existential concerns about loneliness, loving relationships and selfhood. Another important finding was that women felt that their sexual functioning and wellbeing tended to go unnoticed, while men said that healthcare professionals focused mainly on erectile function rather than problems with sexual wellbeing. Cultural and gender norms were apparent in these healthcare interactions, and proactive efforts to improve awareness is required in order to improve the quality of care provided to these patients. Healthcare professionals need time, space and support for reflection so that they may enhance their knowledge about the complexity of sexuality and discuss the results of research into hormone replacement in men and women. They also need support to develop critical awareness of how gendered norms about sexuality may negatively affect the care provided to persons with hypopituitarism.
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| 12. |
- Frändemark, Åsa, 1988, et al.
(författare)
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Fatigue: A distressing symptom for patients with irritable bowel syndrome
- 2017
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Ingår i: Neurogastroenterology and Motility. - : Wiley. - 1350-1925 .- 1365-2982. ; 29:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Fatigue is a frequent symptom in patients with irritable bowel syndrome (IBS), and is associated with poor quality of life. However, few studies have evaluated its impact on daily life or the perceived distress it can cause. Using a multi-methods approach, this study describes the impact and manifestations of fatigue in patients with IBS and investigates the relationship between fatigue severity and illness-related and health-promoting factors. Methods: A total of 160 patients with IBS completed self-reported questionnaires assessing fatigue, gastrointestinal symptoms, psychological distress, and sense of coherence. Fatigue was assessed with the Fatigue Impact Scale, which also includes structured and open-ended questions which were analyzed with a deductive qualitative analysis. Patients were classified as having severe, moderate, or mild fatigue based on frequency, distress and impact on daily life. Key Results: The open-ended questions revealed a multidimensional impact on life. Fatigue mainly interfered with the ability to perform physical activities, work, and domestic work, and the ability to interact socially. Decreased stamina was evident, along with strategies to limit the bodily consequences of tiredness. Severe fatigue was accompanied by more severe IBS symptoms, anxiety and depression and lower sense of coherence. Conclusions & Inferences: Fatigue is a distressing symptom which occurs in a sizeable proportion of patients with IBS. It affects life in a multidimensional way, with poor bodily stamina being the most prominent feature. Fatigue, along with sense of coherence, depression and anxiety, needs to be assessed, confirmed and targeted for interventions.
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| 13. |
- Gyllensten, Hanna, 1979, et al.
(författare)
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A national research centre for the evaluation and implementation of person-centred care: Content from the first interventional studies
- 2020
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Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 23:5, s. 1362-1375
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 14. |
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| 15. |
- Heckemann, Birgit, 1969, et al.
(författare)
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Finding the Person in Electronic Health Records. A Mixed-methods Analysis of Person-centered Content and Language
- 2022
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Ingår i: Health Communication. - : Informa UK Limited. - 1041-0236 .- 1532-7027. ; 37:4, s. 418-424
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 16. |
- Heckemann, Birgit, 1969, et al.
(författare)
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The importance of personal documentation for patients living with long-term illness symptoms after pituitary surgery: A Constructivist Grounded Theorystudy.
- 2023
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Ingår i: Health expectations : an international journal of public participation in health care and health policy. - : Wiley. - 1369-7625. ; 26:1, s. 226-236
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Tidskriftsartikel (refereegranskat)abstract
- Despite surgical treatment, pituitary adenomas often cause long-term illness symptoms, that profoundly impact patients' quality of life physically, psychologically and socially. Healthcare professionals often fail to recognize and discuss the ensuing problems. Personal documentation, such as symptom monitoring, reflective writing or even posts on social media, may help this patient group to manage their daily life and support communication of their care needs. Documentation strategies and the role of documentation for people with long-term symptoms after pituitary adenoma surgery are currently unknown.To examine the effects and strategies of documenting symptoms, activities and physical and emotional well-being among people living with long-term pituitary adenoma.In this Constructivist Grounded Theory study, 12 individuals living with long-term illness symptoms after pituitary adenoma surgery described their documentation strategies in in-depth interviews using teleconferencing and photo-elicitation between August and October 2020.Strategies for documentation included analogue and digital media. One core category (Exercising autonomy) and three categories describing processes (Gaining insight, Striving for controland Sharing) emerged from the analysis. These three interrelated processes become an expression of autonomy to manage life and make sense of chronic illness. Personal documentation is a flexible tool that is used more extensively in times of ill health and less in times of relative well-being. Sharing documentation with healthcare professionals facilitated care planning and sharing with friends and family fostered emotional well-being.Personal documentation is a valuable resource for managing life after pituitary adenoma surgery. The current findings may be relevant to other chronic illnesses. Further research exploring potential tools for personal documentation is needed.We deliberately chose a Constructivist Grounded Theory approach for this interview study. Using Constructivist Grounded Theory, we gavepeople living with long-termsymptoms a voice, allowing them to freely speak about managing their illness in connection with personal documentation. The theoretical sampling approach enabled us to invite participants that could provide a broad overview of the landscape of personal documentation.
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| 17. |
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| 18. |
- Jakobsson, Sofie, 1968, et al.
(författare)
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Health status and most distressing concerns at admission and discharge reported by patients cared for at an internal medical care ward
- 2018
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318. ; 32:3, s. 1168-1178
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundTo 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. AimTo 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 methodsOne 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. ResultsThere 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. ConclusionsMany 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.
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| 19. |
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| 20. |
- Andersson, Henrik, et al.
(författare)
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Competencies in Swedish emergency departments - The practitioners' and managers' perspective.
- 2014
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Ingår i: International emergency nursing. - : Elsevier BV. - 1878-013X .- 1755-599X. ; 22:2, s. 81-87
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 21. |
- Andersson, Henrik, 1968, et al.
(författare)
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Management of Everyday Work in Emergency Departments – an Exploratory Study with Swedish Managers
- 2014
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Ingår i: International Emergency Nursing. - : Elsevier BV. - 1755-599X .- 1878-013X. ; 22:4, s. 190-196
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: 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. Method: 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. Results: 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. Conclusion: 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.
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| 22. |
- Andersson, Henrik, et al.
(författare)
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The everyday work at a Swedish emergency department – The practitioners’ perspective
- 2012
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Ingår i: International Emergency Nursing. - : Elsevier BV. - 1755-599X .- 1878-013X. ; 20:2, s. 58-68
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Tidskriftsartikel (refereegranskat)abstract
- In the everyday work at emergency departments (EDs), the patients being cared for have different needs and perceived symptoms. To meet their need for emergency care, knowledge of the work is important. The aim of this study is to explore the everyday work at a Swedish ED from a practitioner's perspective. METHOD: This study has a qualitative, exploratory design with observations and interviews at two EDs. Data were analysed by content analysis. FINDINGS: The everyday work is characterised by a rapid, short and standardised encounter with limited scope to provide individualised care, which leads to a mechanical approach. It is also characterised by an adaptive approach in which practitioners strive to be adaptable by structuring everyday work and cooperation to achieve a good workflow. CONCLUSIONS: The study shows that the practitioners' encounter with patients and relatives is rapid and of limited duration. The care activities that practitioners mainly perform comprise standard medical management and are performed more mechanically than in a caring way. The practitioners strive to balance the requirements and the realisation of the everyday work through structures and in cooperation with other practitioners, although they work more in parallel than in integrated teams.
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| 23. |
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| 24. |
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| 25. |
- Bergh, Ingrid, 1956, et al.
(författare)
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The elderly patient’s everyday language of pain.
- 2004
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Ingår i: Abstract accepterad för presentation vid the 16th Annual Scientific Sessions of the Eastern Nursing Research Society (ENRS). Boston Marriott Quincy Massachusetts, USA, 2004..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 26. |
- Bergh, Ingrid, 1956, et al.
(författare)
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Ways of talking about experiences of pain among older patients following orthopaedic surgery.
- 2005
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Ingår i: Journal of advanced nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 52:4, s. 351-9
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this study was to examine how older patients who had undergone hip surgery described their experience of pain. BACKGROUND: A verbal report of pain is considered to be the single most reliable indicator of a person's pain experience. When assessing pain, healthcare professionals must be able to interpret the content of pain reports in order to understand older patient's pain experiences. METHODS: The study was carried out in two orthopaedic and two elder care wards in a large university hospital in Sweden in 2000. Altogether, 38 patients with hip replacement (mean age = 75) and 22 patients with hip fracture (mean age = 81) took part. A face-to-face interview was conducted with each patient on the second day after operation. Data were transcribed and analysed using descriptive qualitative content analysis. FINDINGS: Participants expressed their pain in a nuanced and detailed way in everyday language. Four main themes with sub-themes emerged: (a) objectification (localizing; quantifying; characterizing; temporalizing); (b) compensating (substitution; picturing); (c) explaining (functionalizing pain and its relief; externalizing pain and its relief); (d) existentializing (present pain orientation; future pain orientation). CONCLUSIONS: Exploring the ways older patients talk about pain is expected to result in a better understanding of the older patient's need of empathic individualized care and in the optimization of pain management.
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| 27. |
- Björkman, Ida, et al.
(författare)
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An Intervention for Person-Centered Support in Irritable Bowel Syndrome Development and Pilot Study
- 2019
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Ingår i: Gastroenterology Nursing. - : Ovid Technologies (Wolters Kluwer Health). - 1042-895X. ; 42:4, s. 332-341
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 28. |
- Björkman, Ida, et al.
(författare)
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More similarities than differences between men and women with irritable bowel syndrome
- 2015
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Ingår i: Neurogastroenterology and Motility. - : Wiley. - 1350-1925 .- 1365-2982. ; 27:6, s. 796-804
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Tidskriftsartikel (refereegranskat)abstract
- Background: Differences regarding symptoms, coping abilities, and quality of life (QOL) between men and women with irritable bowel syndrome (IBS) have been reported but data are sparse and sometimes conflicting. The aim of present study was to investigate gender differences in gastrointestinal, extra-intestinal, and psychological symptoms, and sense of coherence (SOC) and QOL in a large group of patients diagnosed with IBS. Methods: We analyzed questionnaire data from 557 patients (152 men) diagnosed with IBS consecutively included in studies at an outpatient clinic for functional bowel disorders between 2002 and 2010. Following questionnaires were included: IBS severity scoring system (IBS-SSS), Hospital Anxiety and Depression Scale (HAD), IBSQOL Scale, Visceral Sensitivity Index (VSI), SOC Scale, Bristol Stool Form Scale (BSFS), and Patient Health Questionnaire (PHQ-15). Key Results: Women had harder stools (FDR-adjusted p-value: q = 0.033), more severe bloating (q = 0.020), higher symptom severity (q = 0.042), higher total somatic symptom burden (q = 0.035), lower SOC (q = 0.042), and lower QOL. Women rated more general anxiety (q = 0.017) and gastrointestinal-specific anxiety (q = 0.042), but there were no group differences in depression, pain, stool frequency, impact on daily life, dissatisfaction with bowel habit, or extra-colonic symptoms. The differences found were small (effect sizes: r < 0.3). Conclusions & Inferences: In this study, we demonstrated more similarities than differences between men and women with IBS. The largest difference were seen for QOL which might reflect certain structural stressors to which women in general are more exposed than men. © 2015 John Wiley & Sons Ltd.
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| 29. |
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| 30. |
- Björkman, Ida, et al.
(författare)
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Patients’ experiences of healthcare encounters in severe irritable bowel syndrome: an analysis based on narrative and feminist theory
- 2016
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 1365-2702 .- 0962-1067. ; 25:19-20, s. 2967-2978
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Tidskriftsartikel (refereegranskat)abstract
- 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. © 2016 John Wiley & Sons Ltd
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| 31. |
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| 32. |
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| 33. |
- Dellenborg, Liselott (Lisen), 1966, et al.
(författare)
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Transcultural Encounters in a Medical Ward in Sweden: Experiences of Health Care Practitioners
- 2012
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Ingår i: Journal of Transcultural Nursing. - : SAGE Publications. - 1043-6596 .- 1552-7832. ; 23:4, s. 342-350
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to explore the approach adopted by health care practitioners when handling transcultural encounters. The study was performed by means of action research, a reflective process led by practitioners and researchers working together to improve practice and solve problems. Data were collected through participant observations at a coronary unit in Sweden and group discussions with the health care professionals and were analyzed and interpreted using a hermeneutic approach. The narratives in the interview text illustrated a switch between three levels of understanding human behavior: the individual level (personality), the collective or group level (what is termed culture), and the universal level (human nature), focusing on differences in the first two and similarities in the third. This study highlights the importance of practitioners comprehending the complex relationship between individuality and cultural context and understanding cultural identity as being fluid and coexisting with other differences, such as class, education, gender, and age.
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| 34. |
- Ekerfors, Ulrika, et al.
(författare)
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Muscle performance and fatigue in compensated chronic liver disease.
- 2019
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Ingår i: Scandinavian journal of gastroenterology. - : Informa UK Limited. - 1502-7708 .- 0036-5521. ; 54:7, s. 925-933
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Tidskriftsartikel (refereegranskat)abstract
- 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. Objective: We aimed to evaluate fatigue and the potential association with muscle performance and physical activity in outpatients with CLD. Methods: Two-hundred seventy outpatients with CLD were included, (52±15years, mean±SD; 151 females) with autoimmune hepatitis (n=49), primary biliary cholangitis (n=45), primary sclerosing cholangitis (n=46), chronic hepatitis B (n=57) or C (n=73). Patients with a Child-Pugh >6 were excluded. The questionnaire Fatigue Impact Scale (FIS) was used to evaluate fatigue, and physical activity was evaluated through a self-reported level of physical activity. Muscle function was assessed with four muscle tests, walking speed, handgrip strength, standing heel-rise test (SHT) and 'Timed Up and Go' test (TUG). Results: The median total FIS score was 30 (40% had FIS > 40, considered high-fatigue). Diminished muscle performance was observed in the SHT (% of predicted value: 53±26%) and with maximum grip strength (85±20%). The FIS score was significantly different between groups of CLDs (p=.004). In multivariate analysis the TUG (p=.001), SHT (p=.005), antidepressants (p<.001), and level of physical activity (p=.001) were associated with fatigue (R2=29%). Subjects with higher levels of physical activity had lower FIS (p<.001). Conclusions: In patients with CLD, fatigue was associated with low muscle performance and reduced level of physical activity, which could be a potential therapeutic target.
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| 35. |
- Falk, Hanna, 1977, et al.
(författare)
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Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients.
- 2016
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Ingår i: Journal of Nursing Scholarship. - : Wiley. - 1527-6546 .- 1547-5069. ; 48:6, s. 569-576
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Tidskriftsartikel (refereegranskat)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.
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| 36. |
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| 37. |
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| 38. |
- Feldthusen, Caroline, 1977, et al.
(författare)
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Centredness in health care: A systematic overview of reviews
- 2022
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Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 885-901
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Tidskriftsartikel (refereegranskat)abstract
- Introduction The introduction of effective, evidence-based approaches to centredness in health care is hindered by the fact that research results are not easily accessible. This is partly due to the large volume of publications available and because the field is closely linked to and in some ways encompasses adjoining fields of research, for example, shared decision making and narrative medicine. In an attempt to survey the field of centredness in health care, a systematic overview of reviews was conducted with the purpose of illuminating how centredness in health care is presented in current reviews. Methods Searches for relevant reviews were conducted in the databases PubMed, Scopus, Cinahl, PsychINFO, Web of Science and EMBASE using terms connected to centredness in health care. Filters specific to review studies of all types and for inclusion of only English language results as well as a time frame of January 2017-December 2018, were applied. Results The search strategy identified 3697 unique reviews, of which 31 were included in the study. The synthesis of the results from the 31 reviews identified three interrelated main themes: Attributes of centredness (what centredness is), Translation from theory into practice (how centredness is done) and Evaluation of effects (possible ways of measuring effects of centredness). Three main attributes of centeredness found were: being unique, being heard and shared responsibility. Aspects involved in translating theory into practice were sufficient prerequisites, strategies for action and tools used in safeguarding practice. Further, a variety and breadth of measures of effects were found in the included reviews. Conclusions Our synthesis demonstrates that current synthesized research literature on centredness in health care is broad, as it focuses both on explorations of the conceptual basis and the practice, as well as measures of effects. This study provides an understanding of the commonalities identified in the reviews on centredness in healthcare overall, ranging from theory to practice and from practice to evaluation. Patient or Public Contribution Patient representatives were involved during the initiation of the project and in decisions about its focus, although no patient or public representatives made direct contributions to the review process.
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| 39. |
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| 40. |
- Fridh, Isabell, 1954, et al.
(författare)
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Extensive human suffering : a point prevalence survey of patients' most distressing concerns during inpatient care
- 2015
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 29, s. 444-453
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Tidskriftsartikel (refereegranskat)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.
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| 41. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing students' experiences of being involved in a clinical research project.
- 2014
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Ingår i: Sigma Theta Tau International Honor Society’s 2nd European Regional Conference i Göteborg, Sverige, 2014-06-16 – 06-18..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: 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.
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| 42. |
- Henoch, Ingela, 1956, et al.
(författare)
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Nursing students' experiences of involvement in clinical research : An exploratory study
- 2014
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Ingår i: Nurse Education in Practice. - : Churchill Livingstone. - 1471-5953 .- 1873-5223. ; 14:2, s. 188-194
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Tidskriftsartikel (refereegranskat)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.
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| 43. |
- Henoch, Ingela, 1956, et al.
(författare)
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Symptom Distress Profiles in Hospitalized Patients in Sweden: A Cross-Sectional Study.
- 2014
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Ingår i: Research in nursing & health. - : Wiley. - 1098-240X .- 0160-6891. ; 37:6, s. 512-523
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Tidskriftsartikel (refereegranskat)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.
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| 44. |
- Henoch, Ingela, 1956, et al.
(författare)
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Symptom distress profiles in hospitalized patients in Sweden—a point prevalence survey
- 2014
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Ingår i: 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.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)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.
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| 45. |
- Jakobsson, Eva, 1960, et al.
(författare)
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Clinical problems at the end of life in a Swedish population, including the role of advancing age and physical and cognitive function.
- 2008
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Ingår i: Scandinavian journal of public health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 36:2, s. 177-82
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Tidskriftsartikel (refereegranskat)abstract
- AIMS: To improve the understanding of specific clinical problems at the end of life, including the role of advancing age, physical function and cognitive function. METHODS: The study is part of an explorative survey of data relevant to end-of-life healthcare services during the last 3 months of life of a randomly selected sample of the population of a Swedish county. Data were selected through retrospective reviews of death certificates and medical records, and comprise information from 12 municipalities and 229 individuals. RESULTS: A range of prevalent concerns was found. Overall deterioration, urinary incontinence, constipation, impaired skin integrity, anxiety and sleep disturbances were significantly associated with dependency on others for activities of daily living; pulmonary rattles and swallowing disturbances were associated with cognitive disorientation; excepting cough, advancing age did not have significant impacts on these prevalent clinical concerns. CONCLUSIONS: A range of distressing conditions constitute a common pathway for many individuals at or near the end of life. The incorporation of health promotion as a principle of palliative care will probably benefit individuals at the end of life, and includes a proactive focus and emphasis on enhanced well-being at the time of diagnosis of a life-threatening illness. For individuals with physical and cognitive limitations imparting a state of dependency, it is reasonable to provide assurance of care for individuals' specific needs by professionals with both training for and competence in this special and sometimes unique clinical environment.
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| 46. |
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| 47. |
- Jakobsson, Eva, 1960, et al.
(författare)
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End-of-life in a Swedish population: demographics, social conditions and characteristics of places of death.
- 2006
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Ingår i: Scandinavian journal of caring sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 20:1, s. 10-7
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Tidskriftsartikel (refereegranskat)abstract
- The objectives of this study were to identify and describe the demographics and social conditions as well as characteristics of the places of death in a randomly selected sample that died in a county in Sweden during 2001. The present study reports part of the findings from a larger study undertaken during 2003 using a survey design of retrospective reviews of death certificates, medical records, and nursing records. Among several noteworthy findings are: first, an examination of these individuals' living arrangements reveal not only a large and vulnerable group that lives alone at the end-of-life but also a group living separated from their partners near end-of-life; second, individuals differ with respect to residence prior to death, that is private homes versus residential care facilities, imparting highly different contexts of care at the end-of-life; and third, a high prevalence of institutionalized deaths demonstrates that places of death other than hospitals and residential care facilities are uncommon, if not rare. It is concluded that increased attention to the social circumstances of the time period surrounding individuals' at the end-of-life is essential. There is need to develop more integrated models of care for dying people. Contemporary services available are not designed to meet a wide range of peoples' needs at the end-of-life. Home-based care, residential care and hospital care must be adapted to the changing patterns of dying. The services available should be organized to the benefit of the users rather than around the providers. This is the first study of its kind of a Swedish sample and while the data are limited to one county in Sweden its findings may contribute to a deeper understanding of demographic and social patterns at the end-of-life in general.
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| 48. |
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| 49. |
- Jakobsson, Eva, 1960, et al.
(författare)
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Livets slutskede
- 2014
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Ingår i: Friberg F & Öhlén J. Omvårdnadens grunder - Perspektiv och förhållningssätt. - Lund : Studentlitteratur. ; , s. 179-209
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Palliativ vård har likheter med flera generella drag i omvårdnaden, såsom att patienten som person och patientens relationer är betydelsefulla. Även familj och sociala nätverk är viktiga och inkluderas aktivt i palliativ vård, där en respekt för både patient och närstående kan öka patientens potential för en lämplig död. Livet snarare än den förestående döden är i fokus för de flesta människor – även för svårt sjuka i livets slut är det livet som pågår. Palliativ vård koncentreras på symtom och lindring snarare än på sjukdomen i sig och dess behandling. Övergripande mål inom vården är att man alltid, och så långt det går, lindrar lidande i vid bemärkelse och främjar välbefinnandet hos patienterna. Vid vård i livets slutskede är dessa mål dock särskilt viktiga och de kan nås med enkla medel, t.ex. genom att följa patienternas rytm i stället för rutiner, ge utrymme för deras upplevelser av att känna sig hemma, samt att de har tid och rum för sig själv.
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| 50. |
- Jakobsson, Eva, 1960, et al.
(författare)
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Livets slutskede – välbefinnande och död
- 2009
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Ingår i: Omvårdnadens grunder: perspektiv och förhållningssätt, Friberg, F. & Öhlén, J. (red.). - : Studentlitteratur. - 9789144049069 ; , s. 327-356
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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