| 1. |
- Täljemark, Jakob, et al.
(författare)
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The coexistence of psychiatric and gastrointestinal problems in children with restrictive eating in a nationwide Swedish twin study
- 2017
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Ingår i: Journal of Eating Disorders. - : Springer Science and Business Media LLC. - 2050-2974. ; 5
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Tidskriftsartikel (refereegranskat)abstract
- Background: Restrictive eating problems are rare in children but overrepresented in those with neurodevelopmental problems. Comorbidities decrease wellbeing in affected individuals but research in the area is relatively scarce. This study describes phenotypes, regarding psychiatric and gastrointestinal comorbidities, in children with restrictive eating problems. Methods: A parental telephone interview was conducted in 9- or 12-year old twins (n = 19,130) in the Child and Adolescent Twin Study in Sweden. Cases of restrictive eating problems and comorbid problems were established using the Autism, Tics-AD/HD and other Comorbidities inventory, parental reports of comorbidity as well as data from a national patient register. In restrictive eating problem cases, presence of psychiatric and gastrointestinal comorbidity was mapped individually in probands and their co-twin. Two-tailed Mann-Whitney U tests were used to test differences in the mean number of coexisting disorders between boys and girls. Odds ratios were used to compare prevalence figures between individuals with or without restrictive eating problems, and Fisher exact test was used to establish significance. Results: Prevalence of restrictive eating problems was 0.6% (concordant in 15% monozygotic and 3% of dizygotic twins). The presence of restrictive eating problems drastically increased odds of all psychiatric problems, especially autism spectrum disorder in both sexes (odds ratio = 11.9 in boys, odds ratio = 10.1 in girls), obsessive-compulsive disorder in boys (odds ratio = 11.6) and oppositional defiant disorder in girls (odds ratio = 9.22). Comorbid gastrointestinal problems, such as lactose intolerance (odds ratio = 4.43) and constipation (odds ratio = 2.91), were the most frequent in girls. Boy co-twins to a proband with restrictive eating problems generally had more psychiatric problems than girl co-twins and more girl co-twins had neither somatic nor any psychiatric problems at all. Conclusions: In children with restrictive eating problems odds of all coexisting psychiatric problems and gastrointestinal problems are significantly increased. The study shows the importance of considering comorbidities in clinical assessment of children with restrictive eating problems.
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| 2. |
- Pareto, Lena, 1962-, et al.
(författare)
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Virtual TeleRehab : A case study
- 2011
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Ingår i: Studies in Health Technology and Informatics. - 0926-9630 .- 1879-8365. - 9781607508052 ; 169, s. 676-80
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Tidskriftsartikel (refereegranskat)abstract
- We examined the efficacy of a remotely based occupational therapy intervention. A 40-year-old woman who suffered a stroke participated in a telerehabilitation program. The intervention method is based on virtual reality gaming to enhance the training experience and to facilitate the relearning processes. The results indicate that Virtual TeleRehab is an effective method for motivational, economical, and practical reasons by combining game-based rehabilitation in the home with weekly distance meetings. © 2011 European Federation for Medical Informatics. All rights reserved.
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| 3. |
- Andersson Hagiwara, Magnus, et al.
(författare)
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A shorter system delay for haemorrhagic stroke than ischaemic stroke among patients who use emergency medical service
- 2018
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Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 137:5, s. 523-530
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Tidskriftsartikel (refereegranskat)abstract
- ObjectivesWe compare various aspects in the early chain of care among patients with haemorrhagic stroke and ischaemic stroke. Materials & methodsThe Emergency Medical Services (EMS) and nine emergency hospitals, each with a stroke unit, were included. All patients hospitalised with a first and a final diagnosis of stroke between 15 December 2010 and 15 April 2011 were included. The primary endpoint was the system delay (from call to the EMS until diagnosis). Secondary endpoints were: (i) use of the EMS, (ii) delay from symptom onset until call to the EMS; (iii) priority at the dispatch centre; (iv) priority by the EMS; and (v) suspicion of stroke by the EMS nurse and physician on admission to hospital. ResultsOf 1336 patients, 172 (13%) had a haemorrhagic stroke. The delay from call to the EMS until diagnosis was significantly shorter in haemorrhagic stroke. The patient's decision time was significantly shorter in haemorrhagic stroke. The priority level at the dispatch centre did not differ between the two groups, whereas the EMS nurse gave a significantly higher priority to patients with haemorrhage. There was no significant difference between groups with regard to the suspicion of stroke either by the EMS nurse or by the physician on admission to hospital. ConclusionsPatients with a haemorrhagic stroke differed from other stroke patients with a more frequent and rapid activation of EMS.
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| 4. |
- Tolf, Andreas, et al.
(författare)
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Experiences of being treated with autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis : A qualitative interview study
- 2024
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Ingår i: PLOS ONE. - : PUBLIC LIBRARY SCIENCE. - 1932-6203. ; 19:2, s. e0297573-e0297573
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundAutologous haematopoietic stem cell transplantation (AHSCT) is increasingly used as a treatment for aggressive multiple sclerosis (MS) and has the potential to induce long-term remission and resolution of disease activity. Despite the extensive research on treatment outcome after AHSCT, the experience of living with MS after AHSCT has not been previously described in the scientific literature. The aim of this study was to explore long-term lived experience of people with MS treated with AHSCT.Methods and findingsTo exclude selection bias, all persons treated with AHSCT for MS at Uppsala University Hospital, Sweden, between 2004 and 2007 (n = 10), were asked to participate in the study, and all accepted. Open-ended interviews were conducted, digitally recorded, transcribed verbatim, and then subjected to qualitative content analysis with an inductive approach. Five main themes emerged from the interviews: (I) being diagnosed with MS–an unpredictable existence; (II) a new treatment–a possibility for a new life; (III) AHSCT–a transition; (IV) reclaiming life; and (V) a bright future accompanied by insecurity. AHSCT was described by the participants in terms of a second chance and an opportunity for a new life. The treatment became a transition from a state of illness to a state of health, enabling a previous profound uncertainty to wane and normality to be restored. Although participants of different age and sex were included, the main limitation of this study is the relatively small number of participants. Also, the inclusion of persons from one centre alone could restrict transferability of the results.ConclusionsThe results give a first insight into lived experience following a highly effective induction treatment for MS, and the experience of not having MS anymore. Underpinned by previously described outcome following AHSCT, the results of this study challenge the current view on MS as a chronic disease with no possible cure.
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| 5. |
- Salmiranta, Elin, et al.
(författare)
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The voice of caregivers of children and adolescents with spinal cord injuries : A scoping review
- 2023
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Ingår i: Journal of Spinal Cord Medicine (JSCM). - : Taylor & Francis Group. - 1079-0268 .- 2045-7723. ; , s. 1-12
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Tidskriftsartikel (refereegranskat)abstract
- Context:Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers’ participation is connected to what might be called a voice.Objectives:To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted.Methods:The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach.Results:Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers.Conclusion:The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.
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| 6. |
- Flensner, Gullvi, et al.
(författare)
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Work capacity and health-related quality of life among individuals with multiple sclerosis reduced by fatigue : a cross-sectional study
- 2013
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Ingår i: BMC Public Health. - : Springer Science and Business Media LLC. - 1471-2458. ; 13:224, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Among individuals diagnosed with the chronic neurologic disease, multiple sclerosis (MS), a majority suffers from fatigue, which strongly influences their every-day-life. The aim of this study was to investigate work capacity and health-related quality of life (HRQoL) in a group of MS patients and also to investigate if work capacity and HRQoL could be predicted by background factors, fatigue, heat sensitivity, cognitive dysfunction, emotional distress or degree of disability. Methods: A descriptive, cross-sectional, designed survey was undertaken A questionnaire was sent to 323 individuals diagnosed with MS, aged between 20 and 65 years, with physical disability on the expanded disability status score (EDSS) in the interval 0 ≥ EDSS ≤ 6.5, living in Östergötland county in eastern Sweden. Questions on background factors, occupation and work, together with the health-related quality of life short form instrument (SF-36), the fatigue severity scale (FSS), the perceived deficit questionnaire (PDQ) and the hospital anxiety depression scale (HAD) were posed. Associations between variables were analyzed using Pearson’s and Spearman’s correlations. Differences between groups were tested using the Chi-square test, the Mann Whitney U-test, and the Student’s t-test. Predictive factors were analyzed using multiple linear and multiple logistic regression analysis. Results: Of those who completed the questionnaire (n = 257, 79.6%), 59.8% were working. Work capacity was found significantly more among men (p < 0.005), those with a higher level of education (p < 0.001), those reporting less fatigue (p < 0.001), and those having no heat sensitivity (p = 0.004). For work capacity, significant predictors were low physical disability (EDSS), low fatigue, higher level of education, male sex and lower age. Those with work capacity showed significantly higher HRQoL than those who had no work capacity (p < 0.001). Levels of fatigue, cognition and emotional distress were found to be major contributing factors for HRQoL. Conclusions: Work capacity and HRQoL among individuals diagnosed with MS are highly influenced by fatigue which can be considered as a key symptom. Work capacity was influenced by heat-sensitivity, cognitive difficulties and emotional distress and significant predictive factors besides fatigue, were physical disability (EDSS), age, sex, and level of education. Remaining at work also gives a better HRQoL.
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| 7. |
- Jonsson Gauffin, Helena, et al.
(författare)
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Being parents with epilepsy : thoughts on its consequences and difficulties affecting their children
- 2015
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Ingår i: Neuropsychiatric Disease and Treatment. - : Dove Medical Press. - 1176-6328 .- 1178-2021. ; 11, s. 1291-1298
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Parents with epilepsy can be concerned about the consequences of epilepsy affecting their children. The aim of this paper is to describe aspects of what it means being a parent having epilepsy, focusing the parents’ perspectives and their thoughts on having children.Methods:Fourteen adults aged 18–35 years with epilepsy and subjective memory decline took part in focus-group interviews. The interviews were conducted according to a semi-structured guideline. Material containing aspects of parenthood was extracted from the original interviews and a secondary analysis was done according to a content-analysis guideline. Interviews with two parents for the Swedish book Leva med epilepsi [To live with epilepsy] by AM Landtblom (Stockholm: Bilda ide; 2009) were analyzed according to the same method.Results:Four themes emerged: (1) a persistent feeling of insecurity, since a seizure can occur at any time and the child could be hurt; (2) a feeling of inadequacy – of not being able to take full responsibility for one’s child; (3) acknowledgment that one’s children are forced to take more responsibility than other children do; and (4) a feeling of guilt – of not being able to fulfill one’s expectations of being the parent one would like to be.Conclusion:The parents with epilepsy are deeply concerned about how epilepsy affects the lives of their children. These parents are always aware that a seizure may occur and reflect on how this can affect their child. They try to foresee possible dangerous situations and prevent them. These parents were sad that they could not always take full responsibility for their child and could not live up to their own expectations of parenthood. Supportive programs may be of importance since fear for the safety of the child increases the psychosocial burden of epilepsy. There were also a few parents who did not acknowledge the safety issue of their child – the authors believe that it is important to identify these parents and provide extra information and support to them.
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| 8. |
- Berntsson, Shala G., 1964-, et al.
(författare)
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Cerebellar ataxia and intrathecal baclofen therapy : Focus on patients´ experiences
- 2017
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 2:6
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Tidskriftsartikel (refereegranskat)abstract
- Elucidating patients´ experiences of living with chronic progressive hereditary ataxia and the symptomatic treatment with intrathecal baclofen (ITB) is the objective of the current study. A multicenter qualitative study with four patients included due to the rare combination of hereditary ataxia and ITB therapy was designed to elucidate participants' experiences through semi-structured interviews. The transcribed text was analyzed according to content analysis guidelines. Overall we identified living in the present/ taking one day at a time as the main theme covering the following categories: 1) Uncertainty about the future as a consequence of living with a hereditary disease; The disease; 2) Impact on life as a whole, 3) Influence on personal life in terms of feeling forced to terminate employment, 4) Limiting daily activities, and 5) ITB therapy, advantages, and disadvantages. Uncertainty about the future was the category that affected participants' personal life, employment, and daily activities. The participants' experience of receiving ITB therapy was expressed in terms of improved quality of life due to better body position and movement as well as better sleep and pain relief.
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| 9. |
- Engström, Maria, 1958-, et al.
(författare)
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Thalamo-striato-cortical determinants to fatigue in multiple sclerosis
- 2013
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Ingår i: Brain and Behavior. - : Wiley. - 2162-3279 .- 2162-3279. ; 3:6, s. 715-728
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Tidskriftsartikel (refereegranskat)abstract
- Background The aim was to explore the thalamo-striato-cortical theory of central fatigue in multiple sclerosis (MS) patients with self-reported fatigue. If the theory correctly predicted fatigue based on disruptions of the thalamo-striato-cortical network, we expected altered brain activation in this network in MS participants while performing a complex cognitive task that challenged fatigue. Methods
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| 10. |
- Ozanne, Anneli, 1978, et al.
(författare)
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Wearables in epilepsy and Parkinson's disease : A focus group study
- 2018
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Ingår i: Acta Neurologica Scandinavica. - : Hindawi Limited. - 0001-6314 .- 1600-0404. ; 137:2, s. 188-194
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Wearable sensors that measure movement and physiological variables are attractive for clinical evaluation of neurological diseases such as epilepsy and Parkinson's disease (PD). The aim of this study was to explore perceptions regarding the use of wearable technology in disease monitoring and management as reported by individuals with epilepsy and Parkinson's disease as well as health professionals working with these patient groups.MATERIALS AND METHODS: Six patient groups (n=25) and two groups with health professionals (n=15) participated in this qualitative, descriptive study with focus group interviews. A manifest qualitative content analysis was used.RESULTS: Four categories and nine subcategories emerged from the analysis. Participants saw possible benefits for improved treatment effect and valued this benefit more than possible inconvenience of wearing the sensors. Discrete design and simplicity were considered as facilitators for improved usability. They emphasized the importance of interactive information between patients and health professionals. However, they were concerned about unclear information and inconclusive recordings and some fears about personal integrity were at odds with the expectations on interactivity.CONCLUSIONS: Patients need to feel well informed and find an added value in using wearables. Wearables need to be user-friendly, have an attractive design, and show clinical efficacy in improving disease management. Variations in perceptions regarding integrity, benefits, and effectiveness of monitoring indicate possible conflicts of expectations among participants. The engagement of end users, patients, and health professionals, in the design and implementation process, is crucial for the development of wearable devices that enhance and facilitate neurological rehabilitation practice.
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