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Since 1992, the European Neuromuscular Centre facilitated workshops to bring experts in the field of neuromuscular disorders together. After organising more than 235 workshops, it is time to evaluate what impact these 25 years of ENMC workshops have had on the neuromuscular research field and on people affected by a neuromuscular condition. To measure this, workshop topics were retrospectively evaluated and bibliometric analyses on the citation scores of ENMC-derived publications were performed. In addition, a personalized survey was used to investigate the actual achievement and implementation of workshop deliverables. The evaluation of 25 years’ workshop topics revealed a strong representation of muscular dystrophies, congenital and mitochondrial myopathies. The publications derived from ENMC workshops scored “high impact” as illustrated by the Mean Normalized Citation Score of 1.24. Also 16% of the ENMC papers belong to the top 10% best cited articles in the neuromuscular field. The main outcome of the personalised survey was that 90% of all workshop deliverables were started and either ongoing or completed. Of these deliverables, 78% were implemented in the field; bringing state-of-the-art knowledge and new collaborations to researchers and clinicians, improving designs of clinical trials and innovating tools to make accurate diagnoses.  相似文献   

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Introduction Neurological rehabilitation aims to improve quality of life of patients with acute and chronic neurological conditions. Much of the existing research focuses on the impact of rehabilitation on physical functioning, with less emphasis on emotional wellbeing. This study assessed changes in psychological functioning in patients on discharge from rehabilitation and three months after discharge. Methods Patients admitted over a six–month period to a neurological rehabilitation unit were recruited prospectively to this study. Psychological functioning was measured by the self–report General Health Questionnaire and the Hospital Anxiety and Depression Scale. In addition, physical functioning was measured by the Barthel index and Functional Independence Measure. Results Psychological functioning was found to be significantly improved with rehabilitation. However, after three months, patients’ scores returned to pre–treatment values. Anxiety was consistently elevated on admission, discharge and follow–up. In contrast, physical functioning improved from admission to discharge and was maintained at follow–up assessment. Conclusion Rehabilitation services need to focus more on psychological functioning after discharge and identify effective strategies to maintain wellbeing.  相似文献   

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Summary

Alzheimer's disease is the most common form of dementia, although its diagnosis can only be confirmed after autopsy. While 10% of cases show a family history of the disease, the remainder are sporadic. Disease-causing mutations in three genes (amyloid precursor protein and two presenilin genes) have been discovered which account for nearly all of the familial cases of Alzheimer's disease. The sporadic forms of the disease are associated with a number of genetic risk factors (apolipoprotein E, x1antichymotrypsin, very low density lipoprotein receptor and mitochondrial DNA mutations) but none of these are either sufficient on their own or necessary for the disease. This leaves open the possibility that one or more extrinsic environmental factors may affect the progression of Alzheimer's disease. Although the evidence for specific extrinsic factors is lacking, the role of putative agents (aluminium, antioxidants, head trauma) and how they might interact with intrinsic genetic factors is discussed. Alzheimer's disease, therefore, demonstrates genetic heterogeneity and, in addition, may be considered as a multifactorial disorder.  相似文献   

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BackgroundThe first onset of psychosis can exert a significant negative impact on the functioning and positive wellbeing of family carers. Carer reports of “burnout” have recently been recorded in early psychosis carers, though the literature is scarce detailing our understanding of how burnout relates to the primary experience of caregiving. The current study investigated reports of burnout and its relationship with beliefs about caregiving and wellbeing in a large group of early psychosis carers who were routinely assessed within an early intervention team.Methods and materialsUsing a cross-sectional design, 169 early psychosis carers completed the Maslach Burnout Inventory alongside measures of caregiving experiences, affect and wellbeing.ResultsThe mean illness length for patients with psychosis was 18 months. Their mean age was 24.4 years and most was male (65%). The majority of carer participants were parental caregivers and living with their relative with psychosis. Across the three key burnout dimensions, 58% of the sample reported high levels of emotional exhaustion; 31% endorsed high levels of depersonalization; and 43% reported low levels personal accomplishment. The most severe level of burnout, reflecting elevated rates across all three dimensions, was observed in 16% of the sample. Carer burnout was positively associated with negative caregiving experiences (i.e. burden), poor affect, and reduced levels of positive wellbeing and perception of being in good health.ConclusionsReports by early psychosis carers of exhaustion, feeling inadequate and expressing negativity towards the relative they care for is not uncommon and are closely associated with their overall negative appraisals of caregiving. The results underscore the importance of developing targeted interventions during the early phase, which are designed to reduce the development and entrenchment of burnout responses in carers, but to also mitigate its negative sequelae.  相似文献   

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The subthalamic nucleus (STN) serves important functions in regulating movement, cognition, and motivation and is connected with cortical and basal ganglia circuits that process reward and reinforcement. In order to further examine the role of the STN on motivation toward food in non-deprived rats, these experiments studied the effects of pharmacological inhibition or μ-opioid receptor stimulation of the STN on the 2-h intake of a sweetened fat diet, the amount of work exerted to earn sucrose on a progressive ratio 2 (PR-2) schedule of reinforcement, and performance on a differential reinforcement of low-rate responding (DRL) schedule for sucrose reward. Separate behavioral groups (N=6-9) were tested following bilateral inhibition of the STN with the GABA(A) receptor agonist muscimol (at 0-5 ng/0.5 μl/side) or following μ-opioid receptor stimulation with the agonist D-Ala2, N-MePhe?, Gly-ol-enkephalin (DAMGO; at 0, 0.025 or 0.25 μg/0.5 μl/side). Although STN inhibition increased ambulatory behavior during 2-h feeding sessions, it did not significantly alter intake of the sweetened fat diet. STN inhibition also did not affect the breakpoint for sucrose pellets during a 1-h PR-2 reinforcement schedule or impact the number of reinforcers earned on a 1-h DRL-20s reinforcement schedule in non-deprived rats. In contrast, STN μ-opioid receptor stimulation significantly increased feeding on the palatable diet and reduced the reinforcers earned on a DRL-20 schedule, although DAMGO microinfusions had no effect on PR-2 performance. These data suggest that STN inhibition does not enhance incentive motivation for food in the absence of food restriction and that STN μ-opioid receptors play an important and unique role in motivational processes.  相似文献   

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The objective is to identify the differences and the main factors influencing health status and well-being variables between institutionalized and non-institutionalized older adults, as well as the interaction effect of institutionalization and age. Data on a total of 468 older adults from a national survey on non-institutionalized and from a study on institutionalized older people were analyzed. Socio-demographic variables and measures on well-being (Personal Well-being Index, PWI), health status (EQ-5D), functional ability (Barthel Index), depression (Hospital Anxiety and Depression Scale-Depression subscale), loneliness and comorbidity were used. Analysis of variance and Kruskal-Wallis tests to examine differences between groups and multiple regression analyses to identify factors associated to health and well-being were performed. Significant differences in health status variables, but not in well-being were detected between groups. Controlling for age, differences in health status (EQ-VAS) were found to be not significant in both groups. In the non-institutionalized group, people aged 78 years or more reported a significantly lower well-being (PWI) than younger counterparts. Step-wise multiple regression analysis showed that depression, functional dependence, loneliness and sex were associated with health status; while depression, health status, loneliness and the interaction of age-institutionalization were related to well-being. The results suggest that age influences community-dwelling older adults' well-being to a greater extent than it does to institutionalized older people. This finding has implications for resource allocation and interventions addressed to improve health and well-being in older adults.  相似文献   

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A growing body of research has suggested that narcissistic personality disorder (NPD) contains 2 factors or types: overt/grandiose and covert/vulnerable. A recent factor analysis of Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), NPD symptoms supported a similar 2-factor model. The present research tested this proposed 2-factor solution against a 1-factor solution (N = 289; 72% patients) using both confirmatory factor analysis and an examination of associations between the resultant factors and theoretically relevant criteria (other personality disorders; depression, anxiety). The results of the confirmatory factor analysis supported a 1-factor solution. Likewise, the 2 factors each yielded a similar pattern of correlations with relevant criteria. Together, these results argue against a 2-factor structure for the current DSM-IV NPD symptoms. Given the broader research literature suggesting a 2-factor structure of narcissism, strategies for assessing both overt/grandiose and covert/vulnerable forms of narcissism in DSM-V are discussed.  相似文献   

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This paper continues our earlier investigation of autistic children's deficit in attributing beliefs to others—in their theory of mind. Three experiments are reported. The first tests the prediction that autistic children will fail to distinguish mental and physical entities. The second tests the prediction that they will also be unaware of the mental function of the brain. The third tests the prediction that they will be unable to take into account their own mental states. This latter prediction was tested using Appearance-Reality (A-R) tasks. All three predictions were supported. Deficits in these areas were not found among mentally handicapped or normal children of the same or lower mental and chronological age, suggesting that they may be autism-specific and independent of general developmental delay. It is argued that autistic children's failure to make A-R distinctions is consistent with Leslie's (1987) metarepresentation theory of autism.A version of this paper was presented at the BPS Developmental Psychology Conference, Harlech, Wales (September 1988), in a symposium entitled Autism and Theory of Mind at the SRCD Conference in Kansas (April 1989), and in an invited seminar at the MRC Cognitive Development Unit, London (May, 1989). In these presentations, only pilot data were reported. I am grateful to the Psychology Department, University College London, for their support; and to the pupils and staff at the following London schools for their cooperation: Penton, St Luke's, and Rosemary Schools, Islington, and the Sybil Elgar School, Ealing. I also acknowledge useful comments from Annette Karmiloff-Smith, Susan Carey, Paul Harris, Joseph Perner, and from the anonymous reviewers.  相似文献   

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Abstract

Mihaly Csikszentmihalyi, a psychologist, conducted research into the psychological state of happiness. A result of this work is the concept of “flow” (Csikszentmihalyi, 1992 Czikszentmihalyi, M. 1992. “Flow”: The psychology of happiness, USA: Harper & Row.  [Google Scholar]). Csikszentmihalyi's work has to date not been reviewed in art therapy literature for its relevance to our clinical practice or theoretical conceptualisation. Both art therapy and the concept of “flow” are concerned with the well-being of the individual. In this paper I will explore possible intersections between them. I present a summary of the salient features of Csikszentmihalyi's findings in regard to flow and explore how I have found that an understanding of this psychological state can be relevant in my art therapy practice. A consideration of the phenomenon of “flow” may be a way of re-addressing a balance between understanding an art therapy client's areas of “wellness” and “strength” as well as possible areas of “ illness” or “difficulty”.  相似文献   

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In 2014, stories appeared in national and international media claiming that the condition of “selfitis” (the obsessive taking of selfies) was to be classed as a mental disorder by the American Psychiatric Association and that the condition could be borderline, acute, or chronic. However, the stories were a hoax but this did not stop empirical research being carried out into the concept. The present study empirically explored the concept and collected data on the existence of selfitis with respect to the three alleged levels (borderline, acute, and chronic) and developed the Selfitis Behavior Scale (SBS). Initially, focus group interviews with 225 Indian university students were carried out to generate potential items for the SBS. The SBS was then validated using 400 Indian university students via exploratory factor analysis (EFA). Six factors were identified in the EFA comprising environmental enhancement, social competition, attention seeking, mood modification, self-confidence, and social conformity. The findings demonstrate that the SBS appears to be a reliable and valid instrument for assessing selfitis but that confirmatory studies are needed to validate the concept more rigorously.  相似文献   

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