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- 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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- Jakobsson Larsson, Birgitta, 1965-, et al.
(författare)
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Quality of life among relatives of patients with amyotrophic lateral sclerosis : A prospective and longitudinal study.
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 20:2, s. 203-211
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Relatives are often central in caring for patients with amyotrophic lateral sclerosis (ALS), involving considerable physical, emotional, and social challenges. The aim of this study was to describe individual quality of life (iQoL) among relatives of patients with ALS, from diagnosis through disease progression.METHOD: A total of 31 relatives were included. Data collection was performed at five time points: 1-3 months after their relatives had been diagnosed with ALS and every 6 months for 2 years. Quality of life was determined using the Schedule of Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW), emotional distress with the Hospital Anxiety and Depression Scale (HADS), and the illness severity of the patients was determined with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R).RESULTS: The SEIQoL-DW involves participants nominating the important life areas. The most nominated areas were family, friends, health, and leisure. Although most relatives had overall good and stable iQoL, several had scores indicating poor iQoL on some occasions during the disease trajectory. The relatives' iQoL correlated with emotional well-being and the patient's physical function at different time points.SIGNIFICANT OF RESULT: Social relations, emotional well-being, and rapid decline in the patient's physical function influence the relatives' iQoL. Measuring both emotional well-being and iQoL, with a focus on the relatives' own descriptions of perceived iQoL and those factors contributing to their iQoL during the disease trajectory may improve the possibility of identifying and supporting those relatives with poor iQoL.
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- Ozanne, Anneli, 1978, et al.
(författare)
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Impact of an education program to facilitate nurses' discussions of existential issues in neurological care
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 20:5, s. 630-636
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Tidskriftsartikel (refereegranskat)abstract
- Objectives Discussing existential issues is integral to caring for people with acute, progressive, or life-limiting neurological illness, but there is a lack of research examining how nurses approach existential issues with this patient group and their family members. The purpose was to examine the experiential impact of an educational program for nurses designed to facilitate discussions of existential issues with patients and family members in neurological wards. Method Nurses in inpatient and outpatient care at a neurological clinic in Sweden were invited to participate in an education program about discussing existential issues with patients and their family members as related to neurological conditions. The evaluation of the program and of the nurses' view of discussing existential issues was conducted through focus groups before and after participation. The data were analyzed by qualitative content analysis. Results The program gave nurses a deeper understanding of existential issues and how to manage these conversations with patients and their family members. Both internal and external barriers remained after education, with nurses experiencing insecurity and fear, and a sense of being inhibited by the environment. However, they were more aware of the barriers after the education, and it was easier to find strategies to manage the conversations. They demonstrated support for each other in the team both before and after participating in the program. Significance of results The educational program gave nurses strategies for discussing existential issues with patients and family members. The knowledge that internal and external barriers impede communication should compel organizations to work on making conditions more conducive, for example, by supporting nurses to learn strategies to more easily manage conversations about existential issues and by reviewing the physical environment and the context in which they are conducted.
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- Ståhl, Pernilla, et al.
(författare)
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Quality of life in patients with glioblastoma and their relatives
- 2022
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Ingår i: Acta Neurologica Scandinavica. - : John Wiley & Sons. - 0001-6314 .- 1600-0404. ; 146:1, s. 82-91
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesGlioblastoma is the most aggressive primary brain tumour in adults. The rapid decline of physical and cognitive functions is likely to affect patients and relatives during the entire course of disease. The aim of this study was to describe and compare (a) health-related quality of life (HRQoL) and psychological symptoms between patients with glioblastoma and their relatives, and (b) HRQoL between patients and a general population over time.MethodsAt baseline, 63 patients and 63 relatives were included. The participants completed the Short Form Health Survey (SF-36) and the Hospital Anxiety and Depression scale (HADS) at seven different occasions from pre-surgery until two years post-surgery. A comparison of SF-36 was made between patients and an age- and gender-matched control group. Descriptive analysis, effect size and Wilcoxon signed-rank test were used.ResultsRelatives scored lower health-related quality of life (HRQoL) and higher symptoms of anxiety than patients, whilst patients scored worse in the physical parts of the SF-36. Three weeks post-surgery, relatives scored their lowest HRQoL and had the highest risk of anxiety symptoms. Comparing patients with controls, the patients rated worse in both the mental and physical component summaries in HRQoL at most time points.ConclusionBoth patients and relatives showed deterioration of HRQoL. In addition, relatives showed high frequency of anxiety symptoms. Our data reveal that relatives of patients with glioblastoma need attention throughout the disease trajectory and they also need support at the right time point.
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