| 1. |
- Andersson, Klara, et al.
(författare)
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Multiple stigma among first-generation immigrants with epilepsy in Sweden
- 2021
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Ingår i: Epilepsy and Behavior. - : Elsevier BV. - 1525-5050. ; 115
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. Methods: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. Results: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme “It is a fight to be appreciated as a person and member of society” illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. Conclusions: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable. © 2020 Elsevier Inc.
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| 2. |
- Andersson, Klara, et al.
(författare)
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Perceived stigma in adults with epilepsy in Sweden and associations with country of birth, socioeconomic status, and mental health
- 2022
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Ingår i: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050. ; 136
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Tidskriftsartikel (refereegranskat)abstract
- Background: Stigma contributes to negative health outcomes and amplifies health disparities in epilepsy. This study aimed to investigate associations of perceived stigma with the country of birth and socioeco-nomic status (SES). Methods: This is a cross-sectional questionnaire study. Participants were recruited consecutively from three demographically different neurology outpatient clinics in the southwest of Sweden. Participants responded to a questionnaire concerning their epilepsy, country of birth, mother tongue, and different SES-variables. The Neuro-QOL stigma scale and the Jacoby stigma scale were applied to assess stigma and the Hospital Anxiety and Depression Scale (HADS) and PROMIS Mental Health scale were applied to assess mental health. Results: In total 161 adults with epilepsy were included in the cohort. The median Neuro-QOL stigma score was 48.3, and was higher among foreign-born than in native-born participants (foreign-born in non-European country 52.3, in other European country 49.8, and in native-born 47.0, p = 0.003). Other factors associated with Neuro-QOL were seizure frequency last year (>= 2 seizures 52.4 compared to 1 sei-zure 50.9 and no seizures 44.3, p < 0.001), having had seizures in public (yes 50.9 compared to no 44.7, p = 0.035), HADS depression score >= 11 (57.4 compared to 47.8 for score <11 points, p < 0.001), HADS anx-iety score >= 11 (53.5 compared to 46.8 for score <11 points, p < 0.001), and lower PROMIS Mental Health score (42.9 for PROMIS < 40 compared to 54.4 for PROMIS > 60, p < 0.01). A stepwise multiple regression analysis indicated that having had seizures the last year increased the average Neuro-QOL stigma score with 5.89 and appeared as the most determining factor for the Neuro-QOL stigma score among the vari-ables investigated. Conclusions: It is important that the concerns of foreign-born patients are acknowledged and that the focus of seizure control and the detection and treatment of comorbidities are prioritized in the manage-ment of epilepsy and perceived stigma. (c) 2022 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).
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| 3. |
- Andersson, Klara, et al.
(författare)
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Socioeconomic outcome and access to care in adults with epilepsy in Sweden: A nationwide cohort study.
- 2020
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Ingår i: Seizure. - : Elsevier BV. - 1532-2688 .- 1059-1311. ; 74, s. 71-76
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Tidskriftsartikel (refereegranskat)abstract
- Epilepsy has well-documented associations with low income and low education levels, but the impact of a patient's socioeconomic standing (SES) on the effects of epilepsy have been less studied.We performed a register-based cross-sectional study and asked if SES was associated with more severe epilepsy or limited access to care in Sweden, where health care is universal, and if socioeconomic outcomes (employment and income) differed for persons with epilepsy (PWE) with different levels of educational attainment. The study cohort consisted of all adult patients with an epilepsy diagnosis in the Swedish patient register in 2000-2015 (n = 126,406) and controls (n = 379,131) matched for age, gender, and place of birth.Somatic and psychiatric comorbidities were more common in PWE, while education and income levels were lower. Among PWE, hospitalizations were more common in persons with lower income or education. Having at least one prescription written by a neurologist in the study period was more common in the high-income and high-education groups. Finally, although low educational attainment was associated with low levels of income and inversely associated with employment in both persons with epilepsy and controls, regression analyses demonstrated that these associations were much more noticeable in cases than controls.We conclude that both the severity and consequences of epilepsy are greater in persons of low SES, even in a country with universal health care. This indicates that universal access may not be sufficient to mitigate socioeconomic inequity in epilepsy.
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| 4. |
- Andersson, Klara, et al.
(författare)
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Valproic acid and socioeconomic associations in Swedish women with epilepsy 2010-2015
- 2021
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Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 143:4, s. 383-388
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Tidskriftsartikel (refereegranskat)abstract
- Objective We investigated the correlation between socioeconomic status and the prescription of Valproic acid (VPA) in women of fertile age in Sweden. Methods This is a registered-based cohort study including all women living in Sweden aged 18-45 years in the years 2010-2015, with a diagnosis of epilepsy and no intellectual disability (n = 9143). Data were collected from the National Patient Register, the Drug Prescription Register, and the Longitudinal integration database for health insurance and labor market studies (LISA). Results Women with only 9 years of school were more often prescribed VPA than women with a University degree (12.9% compared to 10.7% in 2015 [p = 0.015]). Similar differences were seen between the lowest and highest income group (16.6% compared to 12.7% in 2015 [p < 0.001]). The odds of having a VPA prescription in 2015 was 1.59 (p < 0.001) in women with 9 years of school compared to women with a University degree, and 1.60 (p < 0.001) in the lowest income group relative to the highest income group after adjusting for age. From 2010 to 2015, the proportion with VPA prescription in the whole cohort diminished with an absolute reduction of -2.2% (p < 0.001). The decrease was similar among the different education and income groups (p = 0.919 and p = 0.280). Significance The results indicate that the increased knowledge on VPA teratogenicity was implemented across socioeconomic strata in the Swedish healthcare system. Women with lower income or education level remained more frequent VPA users. Whether this difference reflects epilepsy type or severity, or socioeconomic disparities, merit further study.
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| 5. |
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| 6. |
- Corell, Alba, et al.
(författare)
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Shared decision-making in neurosurgery: a scoping review.
- 2021
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Ingår i: Acta neurochirurgica. - : Springer Science and Business Media LLC. - 0942-0940 .- 0001-6268. ; 163, s. 2371-2382
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Forskningsöversikt (refereegranskat)abstract
- In modern neurosurgery, there are often several treatment alternatives, with different risks and benefits. Shared decision-making (SDM) has gained interest during the last decade, although SDM in the neurosurgical field is not widely studied. Therefore, the aim of this scoping review was to present the current landscape of SDM in neurosurgery.A literature review was carried out in PubMed and Scopus. We used a search strategy based on keywords used in existing literature on SDM in neurosurgery. Full-text, peer-reviewed articles published from 2000 up to the search date February 16, 2021, with patients 18years and older were included if articles evaluated SDM in neurosurgery from the patient's perspective.We identified 22 articles whereof 7 covered vestibular schwannomas, 7 covered spinal surgery, and 4 covered gliomas. The other topics were brain metastases, benign brain lesions, Parkinson's disease and evaluation of neurosurgical care. Different methods were used, with majority using forms, questionnaires, or interviews. Effects of SDM interventions were studied in 6 articles; the remaining articles explored factors influencing patients' decisions or discussed SDM aids.SDM is a tool to involve patients in the decision-making process and considers patients' preferences and what the patients find important. This scoping review illustrates the relative lack of SDM in the neurosurgical literature. Even though results indicate potential benefit of SDM, the extent of influence on treatment, outcome, and patient's satisfaction is still unknown. Finally, the use of decision aids may be a meaningful contribution to the SDM process.
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| 7. |
- 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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| 8. |
- Fekete, Boglarka, et al.
(författare)
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The Gothenburg population-based glioblastoma research database: Methodological aspects and potential impact
- 2019
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Ingår i: Neurology and Neurosurgery. - 2631-4339. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- Background: Glioblastoma Multiforme (GBM) is the most frequently encountered malignant primary brain tumour. Population-based studies of GBM are still scarce. The current paper describes the design of a prospective population-based multidisciplinary research effort on GBM. Objective: To address the impact of a wide range of clinical parameters in relation to clinical outcome and survival in a population-based cohort of patients with GBM. Further, we aim to examine the role of established and novel biomarkers in tumour tissue and blood in relation to response to treatment and clinical outcome. Methods: This is a single institution, population-based study with consecutive inclusion of patients based on a presumed diagnosis of GBM following radiological diagnostic work-up and discussion at a multidisciplinary tumour conference. Clinical parameters and treatment-related parameters at disease onset and during follow-up, and survival will be recorded. Health-related quality of life and emotional wellbeing for patients and their relatives will be assessed. Fresh-frozen and formalin-fixed paraffin-embedded (FFPE) tumour tissue is stored in an associated tissue biobank. Tissue micro-arrays are generated from representative areas of FFPE. Blood samples at admission for surgery and during follow-up are taken and stored frozen. Expected outcome: The study offers a multidisciplinary and translational approach to GBM research by linking a wide range of clinical parameters to biological parameters with high external validity. Thus, we expect to describe patterns of care and clinical course in a well-defined population-based cohort. Through a biomarker approach, we expect to 1) identify new biological subgroups of GBM, 2) explore and validate established and novel biomarkers for response to therapy, 3) estimate the proportion of patients suitable for targeted (“druggable”) therapy, and 4) explore and validate established and novel biomarkers for survival.
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| 9. |
- 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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