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| 2. |
- Ehn, Mattias, 1972-
(författare)
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Life Strategies, Work and Health in People with Usher Syndrome
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: People with Usher syndrome (USH) have an inherited disorder causing congenital deafness or hearing loss combined with progressive vision loss and, in some cases, balance problems. Previous research has shown that people with USH have poor physical and psychological health. Research has, however, demonstrated that there are in-group health differences that have not yet been explored and that there is a lack of studies on life strategies as well as health in relation to working life.Aim: The aim was to explore the relationship between work and health in people with USH1 and 2 and to explore the experiences of life strategies in people with USH 2.Methods: A quantitative and a qualitative explorative design was employed comprising two cross-sectional studies of the relationship between work and health in people with USH2 (n=67) and USH1 (n=47). The third study, of life strategies, comprised focus group interviews with people with USH2a (n=14) analyzed by content analysis. The fourth study explored the lived experiences of working life by interviewing people with USH2 (n=7) using an interpretative phenomenological approach.Results: Study 1 and 2 demonstrated significant differences in health between working and nonworking people. Nonworking people showed significantly poorer health. In study 3, a variety of strategies to prevent and resolve challenges in life, as well as to comfort oneself was identified. The lived experiences of working life in people with USH2 (study 4) disclosed feelings of satisfaction, striving towards a work life balance. Work also disclosed feelings of limitations and uncertainty about the future.Conclusion: The results, which are discussed in relation to the Meikirsh model of health, demonstrated a complexity. Individual life strategies, psychological flexibility and environmental aspects, such as social determinants have to be considered to receive a comprehensive picture of the relationship between work and health in people with USH. This thesis provides new insights into the health of people with USH.
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| 3. |
- Ehn, Mattias, 1972-, et al.
(författare)
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The relationship between work and health in persons with Usher syndrome type 2
- 2016
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Ingår i: Journal of Visual Impairment & Blindness. - New York, USA : American Foundation for the Blind. - 0145-482X .- 1559-1476. ; 110:4, s. 233-244
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Persons with deafblindness may have additional physical and psychological health problems. In this study we have focused on health from a work-life perspective in persons with Usher syndrome type 2 (USH2), a disorder with sensorineural hearing loss and retinitis pigmentosa. The aim of this study was to investigate the relationship between work and disability pension and physical and psychological health in persons with USH2.Methods: Participants were recruited from the Swedish Usher database. Eighty-four persons (aged 18 to 65 years) received a health-related questionnaire and 67 (36 women and 31 men) agreed to participate. The participants formed two groups (working group, n = 34; disability pension group, n = 33). A Swedish Health on Equal Terms questionnaire comprising questions on psychological and physical health, living conditions, work activity, and social relationships was used. A chi-square test of significance was used with a significance level of p < 0.05.Results: The two groups did not differ in terms of age, gender, degree of hearing loss, visual acuity, or visual field loss. The working group had statistically significant better health compared to the disability pension group in areas such as being overweight, handling problems, concentration, feeling unhappy, depressive symptoms, and feelings of worthlessness. Suicidal thoughts and attempts were significantly more common in the disability pension group.Discussion: Persons with USH2 generally reported very poor physical and psychological health, with significant differences between persons who were working and those who were not. This study highlights the need for early rehabilitation, vocational training, and opportunities to access the labor market. Implications for practitioners: It is important that persons with USH2 receive vocational support from an early age and that professionals in the field of rehabilitation always include work activity as a key element of interventions.
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| 4. |
- Granberg, Sarah, 1973-
(författare)
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Functioning and disability in adults with hearing loss : the preparatory studies in the ICF Core sets for hearing loss project
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Hearing loss (HL) is a health condition that affects more than 360 million people worldwide. The findings from previous research point at the adverse relationship between adults with hearing loss and important aspects of everyday life such as social relations, communication and work-related tasks. However, the overall picture concerning the functional and disabling aspects of adults with HL re- mains incomplete. To identify the functional and disabling aspects, a conceptual and/or theoretical framework is required. The International Classification of Functioning, Disability and Health (ICF) offer a multidimensional framework based on bio-psycho-social assumptions about health. In previous research inves- tigations in which the ICF has been used, some utility problems in the linking (relating) of data to the classification have been highlighted.The aims of the present thesis were to explore the areas of functioning and disability of relevance for adults with HL and to explore how audiological data can be linked to ICF. The aims were explored by applying the methodology of the ‘interdisciplinary evidence-based approach to functioning and disability in adults with HL’, acknowledging the merging of three perspectives designated the Researcher, the Patient and the Professional perspective. Four studies that focus on the three perspectives were conducted. All results were linked to the ICF classification. The results were merged into a model designated ‘the integrative model of functioning and disability in adults with HL’.When the three perspectives were linked, the results revealed several aspects of relevance for the target group. Bodily (individual) dimensions, such as hear- ing, auditory perception, memory, attention, energy, and emotions, were acknowledged. Aspects of everyday life such as conversations, the usage of communication strategies, family relationships and work, were highlighted. Influential environmental factors, such as noise, assistive technical devices, the design of public buildings, social support and the attitudes of people in the envi- ronment, were also identified. In conclusion, interactions seemed to be vital as almost all identified aspects highlighted or were tied to this dimension of human functioning. Further, concerning the linking of the data it was acknowledged that the ICF and the research area of adult HL do not fully comply. Suggestions for improvements in future revisions of the ICF were highlighted and discussed.
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| 5. |
- Granberg, Sarah, 1973-, et al.
(författare)
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The ICF Core Sets for hearing loss: researcher perspective, Part II : Linking outcome measures to the International Classification of Functioning, Disability and Health (ICF)
- 2014
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Ingår i: International Journal of Audiology. - : Informa Healthcare. - 1499-2027 .- 1708-8186. ; 53:2, s. 77-87
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Forskningsöversikt (refereegranskat)abstract
- Objective: To link outcome measures used in audiological research to the ICF classification and thereby describe audiological research from the ICF perspective.Design: Through a peer-reviewed or a joint linking procedure, link outcome measures to the ICF classification system using standardized ICF linking rules. Additional linking rules were developed in combination with the established rules to overcome difficulties when connecting audiological data to ICF. Absolute and relative frequencies of ICF categories were reported.Study sample: The identified outcome measures from the previous study (Part I) constituted the empirical material. Results: In total, 285 ICF categories were identified. The most prevalent categories were related to listening, hearing functions, auditory perceptions, emotions and the physical environment, such as noise and hearing aids. Categories related to communication showed lower relative frequencies, as did categories related to the social and attitudinal environment.Conclusions: Based on the linked outcome measures, communication as a research topic is subordinated to other research topics. The same conclusion can be drawn for research targeting the social and attitudinal environment of adults with HL. Difficulties in the linking procedure were highlighted and discussed, and suggestions for future revisions of the ICF from the audiological perspective were described.
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| 7. |
- Kollén, Lena, 1960-, et al.
(författare)
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Benign Paroxysmal Positional Vertigo is a common cause of dizziness and unsteadiness in a large population of 75-year-olds
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Background and aims: Dizziness is a common problem among the elderly. Studies have shown that 65% of people with dizziness may have a vestibular etiologic diagnosis, possibly Benign Paroxysmal Positional Vertigo (BPPV). The diagnosis of BPPV is made by history and findings in the Dix-Hallpike test. It can be difficult to perform the Dix-Hallpike test in elderly persons due to limited range of motion when extending the neck. In this study we used a side-lying test to stimulate the posterior semicircular canal while the head and neck were fully supported on the examination table. The aims were to investigate the prevalence of dizziness or impaired balance and BPPV in a 75-year old population. Methods: A representative population sample of 675 persons completed a questionnaire about dizziness and 571 persons performed side-lying, static balance and dynamic walking tests.Results: Subjective dizziness and/or impaired balance was found in 36% especially when walking outdoors. A significant gender difference was found with a higher prevalence in women (40%) compared to men (30%) (p<0.01). BPPV was found in 11%. This was significantly more common in women compared to men (p<0.01). Elderly persons with BPPV also showed significantly impaired balance ability in static and dynamic balance tests compared to age matched persons without BPPV(p<0.01). Persons with BPPV reported significantly more subjective problems with dizziness and balance compared to persons without BPPV (p<0.001).Conclusions: Subjective and objective unsteadiness, dizziness and BPPV are common in elderly. The side-lying test is a good screening test for BPPV.
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| 8. |
- Kollén, Lena, 1960-, et al.
(författare)
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Benign paroxysmal positional vertigo is a common cause of dizziness and unsteadiness in a large population of 75-year-olds
- 2012
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Ingår i: Aging Clinical and Experimental Research. - New York, USA : Springer. - 1594-0667 .- 1720-8319. ; 24:4, s. 317-323
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Tidskriftsartikel (refereegranskat)abstract
- Background and aims: Studies have shown that 65% of people with dizziness may have a vestibular etiologic diagnosis, possibly benign paroxysmal positional vertigo (BPPV). The diagnosis of BPPV is based on medical history and findings after the Dix-Hallpike test. It is sometimes difficult to perform the Dix-Hallpike test in elderly persons, due to the limited range of motion when extending the neck. In this study, we used a side-lying test to stimulate the posterior semicircular canal, while the head and neck were fully supported on the examination table. The aims of this study were to investigate the prevalence of dizziness and/or impaired balance and BPPV in a population of 75-year-olds by means of a questionnaire and clinical tests, and to compare elderly persons with and without BPPV.Methods: A representative population sample of 675 persons completed a questionnaire about dizziness and 571 persons underwent side-lying, static balance and dynamic walking tests.Results: Subjective dizziness and/or impaired balance were found in 36% of subjects, especially when walking outdoors. A significant gender difference was found, with a higher prevalence in women (40%) compared with men (30%) (p<0.01). BPPV was found in 11% and was significantly more common in women (p<0.01). Elderly individuals with BPPV also displayed significantly impaired balance in static and dynamic balance tests compared with persons without BPPV (p<0.01). Persons with BPPV reported significantly more subjective problems with dizziness and balance compared with persons without BPPV (p<0.001).Conclusions: Subjective and objective unsteadiness, dizziness and BPPV are common in the elderly.
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| 9. |
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| 11. |
- Möller, Kerstin, 1950-
(författare)
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Impact on participation and service for persons with deafblindness
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Persons with deafblindness experience difficulties in daily life and they experience service to sometimes barrier. The overall aim of this thesis is therefore to discover, evaluate and explain: 1. mechanisms that might have impact on participation restrictions for people who have visual and hearing impairment i.e. deafblindness and 2. mechanisms that might barrier service to these people. Service is used as an umbrella term for health care, education and certain service for persons with disabilities. Materials from multiple sources have been used: literature (Study I No 96 papers). Interviews (Study I and V) with 32 and 3 adults with deafblindness respectively. Questionnaires (Study II and III): answered by 33 and 34 adults and youth with deafblindness. Patient records (Study IV and V): records from 9 and 3 adult females with USH I respectively. Materials mostly retrospectively cover the period from 2005 and about 40–50 years. Both quantitative and qualitative methods were used. International Classification of Functioning, Disability and Health (ICF) were consequently used as a framework to describe as well as a tool to analyze mechanisms. Further, the Ecological approach, Disability as a laminated system and Life course approach were used in order to evaluate and explain mechanisms. The conclusions that can be drawn from an ecological, laminated and life course approach are: Participation restrictions for people with deafblindness are far-reaching and are embedded in a complex process of interaction between the person with deafblindness and the environment. Services entail systematical barriers. In order to improve service it is extremely important to understand the role of participation restrictions in deafblindness. Primary activity limitation is to not see and hear enough for comprehension. Hence, not taking part in the visible and audible world is primary participation restriction. Performing activities without basic information includes risk. One important aspect of deafblindness is exposure. Persons with deafblindness require rehabilitation in a life perspective. In order to increase people’s participation and protection requirement of individually adapted support and assistive devices is necessary. ICF and the UN convention support service alterations.
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| 12. |
- Möller, Kerstin, et al.
(författare)
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Long-term ophthalmic health care in Usher syndrome type I from an ICF perspective
- 2009
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 31:15, s. 1283-1292
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim was to explore ophthalmic health care in female patients with Usher Syndrome type I (USH I) over 20 years and to evaluate the relationship between the ophthalmic health care and the health state of the patients from a health perspective. METHODS: A retrospective study of records from ophthalmology departments (OD) and low vision clinics (LVC) from 1985 to 2004. Assessment of the reports was performed based on the International Classification of Functioning, Disability and Health (ICF). Findings were analysed by manifest content analysis with ICF as a framework and using four themes: health care system, procedure examinations, patient's functioning and disability and procedure actions. RESULTS: The records of nine female patients (aged 25-39 years, 1985) with USH I were selected from the national database of USH. A great number of notes were collected (OD 344 and LVC 566). Procedure examinations were exclusively oriented towards body structure and function. All patients showed aggravated visual impairment over and above the hearing and vestibular impairment. Procedure actions were oriented towards environmental factors. No correlation was found between procedures performed and patient's experience of disability. CONCLUSIONS: The high degree of resource allocation was not correlated to the patients' impairment. The study indicates that the ophthalmic health care was characterised by inefficiency. This conclusion is very serious because patients very likely face severe disability and emotional difficulties. ICF is ought to be incorporated in ophthalmic health care strategy to improve the health care.
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| 13. |
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| 14. |
- Rönnåsen, Berit, 1954-, et al.
(författare)
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Aspects of learning from the perspective of people with Alström syndrome
- 2016
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 1748-3107 .- 1748-3115 .- 0963-8288 .- 1464-5165. ; 38:7, s. 644-652
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The aim of the study was to explore aspects of learning, from a lifelong perspective, in individuals with Alstro ̈m syndrome (AS). AS is an autosomal recessive disorder causing early blindness, progressive sensorineural hearing loss, cardiomyopathy, endocrine disorders, metabolic dysfunction, and abbreviated lifespan.Method: Eleven individuals with AS participated. The study had a qualitative explorative design, giving voice to the participants’ perspectives on their situation. Data were collected using semi-structured interviews, which were subjected to conventional (inductive) qualitative content analysis.Results: The analysis revealed in the participants a quest for independence and an image of themselves as capable people willing to learn, but in constant need of support to continue learning throughout their lives to be as independent as possible.Conclusion: Based on the levels of functioning, i.e. personal resources, revealed in the interviews, supervisors, caregivers, and teachers are encouraged to allow people with AS to be their own advocates, as they know best how, what, and with whom they learn, and what type of sensory material – tactile, auditory, visual, or a combination – is most helpful. Implications for RehabilitationIndividuals with AS strive for independence, and to be independent they need to continue to learn throughout their lives.Individuals with AS know best how they learn, and should be asked what modalities are the most effective for them.The tactile modality for learning will continue throughout life and should be emphasized early in the individual's education and rehabilitation.
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| 18. |
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| 19. |
- Wahlqvist, Moa, 1979-
(författare)
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Health and People with Usher syndrome
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The present thesis concerns people with Usher syndrome (USH) and their health. People with USH have a congenital hearing loss of various degrees and an eye disease with a progressive course; for some, the balance is also affected. Three clinical groups have been identified 1, 2 and 3, and 13 genes have currently been identified. USH is the most common cause of deafblindness. Clinical knowledge and the limited research that exists have shown that people with deafblindness can experience difficulties in everyday life. Depression, anxiety and social withdrawal have been described.The general aim of the present thesis was to describe the health of people with USH. The empirical material employed was based on an extensive survey in which people with USH answered two questionnaires concerning health, anxiety, depression, social trust, work, health-care, financial situation, and alcohol and drug use. The focus of the present thesis is on general health, physical health and psychological health, social trust and finance. Three studies in the present theses focus on USH1, 2 and 3, respectively; finally, the fourth study provides an in-group comparison of people with USH. The results of studies I and III are compared with a crosssection of the Swedish population. The results revealed poor physical and psychological health, a lack of social trust and a strained financial situation regardless of clinical diagnosis. The discussion stresses the importance of taking a biopsychosocial approach when describing the health of people with USH, in which previous research is lacking. Additional research should focus on the mechanisms at different levels that affect people with USH and their health from a life- course perspective. Furthermore, research should include a salutogenic perspective to explore the resources and strengths of people with USH.
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| 20. |
- Wahlqvist, Moa, 1979-, et al.
(författare)
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Implications of Deafblindness : The Physical and Mental Health and Social Trust of Persons with Usher Syndrome Type 3
- 2016
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Ingår i: Journal of Visual Impairment & Blindness. - : American Foundation for the Blind. - 0145-482X .- 1559-1476. ; 110:4, s. 245-256
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The aim of this study was to describe health and social trust in persons with Usher syndrome type 3 (USH3) in relation to hearing and visual impairment.Methods: Participants were recruited from the Swedish Usher database. Twenty-one persons with USH3 received two questionnaires, which covered a wide range of domains related to health and social trust. Fifteen individuals, 4 men and 11 women aged 19-71 years, responded. Each outcome measure within every domain reported by the individual was structured into a matrix, which included auditory and visual findings.Results: Severe problems with health and social trust were apparent for persons with USH3. Differences in the number of reported problems were suggested. Three persons had cochlear implants, and they reported far fewer problems with physical health, mental health, and social trust than the others.Discussion: Three major patterns emerged. The first was that the group was heterogeneous with regard to the problems reported in the biopsychosocial dimensions; that is, general health, physical health, and mental health, as well as social trust. The second was that none of the biopsychosocial dimensions could be disregarded when describing health among persons with USH3. The third major pattern was that a cochlear implant might benefit the health of persons with USH3.Implications for practitioners: The results suggested poor physical and mental health and severe social trust problems for people with USH3. Interdisciplinary strategies are required to facilitate the rehabilitation of persons with USH3 throughout their lifespan.
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| 21. |
- Wahlqvist, Moa, 1979-, et al.
(författare)
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Physical and psychological health in persons with deafblindness that is due to Usher Syndrome Type II
- 2013
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Ingår i: Journal of Visual Impairment & Blindness. - New York, USA : American Foundation for the Blind. - 0145-482X .- 1559-1476. ; 107:3, s. 207-220
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The objectives of the study reported here were to describe the physical and psychological health of persons with Usher syndrome Type II (USH2) and to explore any differences in terms of gender.Methods: The participants were recruited from the Swedish Usher database. In the first step, 122 persons received the questionnaire by mail, and 96 (aged 18–84, with a mean age of 55, 53% of whom were female) agreed to participate. The Health on Equal Terms questionnaire was used, which covered such items as health, living conditions, and social relationships. Results for the participants with USH2 were compared to those of a reference group of 5,738 persons who were drawn from a random sample of the Swedish population retrieved from the Swedish Public Health Institute. The odds ratio (adjusted for gender and age), and its 95% confidence interval were calculated.Results: The participants with USH2 reported that their physical and psychological health was significantly poorer than that of the Swedish reference group. They revealed major problems involving headache, fatigue, depression, suicidal thoughts, and suicide attempts. For the male participants, the psychological differences were even more marked than those of the male reference group.Discussion: The identification of factors associated with physical and psychological health and well-being is important for the design of future rehabilitation strategies for people with USH2. Special focus must be placed on the psychological well-being of men with USH2.Implications for practitioners: The management of rehabilitation services for persons with USH2 calls for interdisciplinary teamwork to provide adequate resources to cope with the physical and psychological health issues demonstrated in this study.
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| 22. |
- Wahlqvist, Moa, 1979-, et al.
(författare)
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Physical and Psychological Health, Social Trust and Financial Situation for persons with Usher syndrome type 1
- 2016
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Ingår i: The British Journal of Visual Impairment. - London, United Kingdom : Sage Publications. - 0264-6196 .- 1744-5809. ; 34:1, s. 15-25
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Tidskriftsartikel (refereegranskat)abstract
- The article describes physical health, psychological health, social trust, and financial situation in persons with deafblindness due to Usher syndrome type 1 (USH1) in comparison with a cross-section of the Swedish population. Persons with USH1 were recruited through the Swedish Usher database. Totally, 87 adults received the Health on Equal Terms (HET) questionnaire. The HET was adjusted, thus the questions were translated into Swedish sign language, and a large font size, better contrast, and a structure compatible with the Braille script reader were also provided. The questionnaire comprises a wide range of domains related to health and wellbeing. In all, 60 persons responded (60% women, mean age: 49 years, range: 21-79 years). The persons with USH1 were compared to a cross section of the Swedish population that included 5738 individuals (56% women, mean age: 49 years, range: 16-84 years). Significant differences in physical health, psychological health, social trust, and financial situation as well as the odds ratio adjusted for sex and age, and its 95% confidence interval are reported. The psychological health, social trust, and financial situation of persons with USH1 were significantly poorer compared to the reference group although this was not the case for physical health. Persons with USH1 only expressed significantly more problems with headache compared to the cross section of the Swedish population. The respondents revealed major problems with fatigue, loss of confidence, and suicide thoughts and attempts. Major social trust and financial problems were reported in terms of refraining going out alone, not receiving help, having no one with whom to share thoughts, and confide in and being unable to obtain 15.000 SEK (approximately US$1.724 or (sic)1.544) in the case of an unforeseen situation. To identify factors associated with physical health, psychological health, social trust, and financial situation is important in the design of future rehabilitation strategies for persons with USH1. The high level of psychological distress and lack of social trust reported could be related to ontological insecurity, as well as lack of recognition from others. Special attention must be devoted to suicide behavior.
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| 23. |
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| 24. |
- Wahlqvist, Moa, 1979-, et al.
(författare)
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Similarities and Differences in Health, Social Trust, and Financial Situation in People With Usher Syndrome, a Bio-Psychosocial Perspective
- 2020
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Ingår i: Frontiers in Psychology. - : Frontiers. - 1664-1078. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The primary aim was to describe the similarities and differences among the general health, physical health, psychological health, social trust, and financial situations of people with Usher syndrome (USH) types 1, 2, and 3. A second aim was to explore whether age, gender, clinical diagnosis, visual field, visual acuity, and degree of hearing impairment were associated with the general health, physical health, psychological health, social trust, and financial situations of people with USH.Methods: In this study, 162 people with USH living in Sweden were included, and all three types of the disease were represented. Data concerning vision, hearing, and genetics were retrieved from the Swedish Usher database. Group comparison using frequencies, chi(2)-tests and Kruskal-Wallis tests for group comparison were used. To examine the effect of independent variables on poor health outcomes, a logistic regression analysis was conducted.Results: Problems with poor health, social trust, and finances were found for all three types; however, more similarities than differences were found. The results of the regression model were ambiguous; it is not clear which independent measures contributed the most to poor outcomes. People with USH3 tended to report the most problems regarding the dependent outcome measures.Conclusion: The observations of the associations between the independent variables and poor health, social trust and finances made in the present study are important to bear in mind in a rehabilitation setting; however, they do not fully explain how people with USH actually feel or rate their health. More research is needed to confirm the knowledge that exists within the clinical setting and the life stories told by the people with USH to merge existing knowledge into a rehabilitation setting based on evidence.
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| 25. |
- Adolfsson, Margareta, 1950-, et al.
(författare)
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Everyday life situations of school-aged children with severe disabilities : what are the goals for the future? an exploratory study
- 2014
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Ingår i: Journal of Intellectual Disability - Diagnosis and Treatment. - : Lifescience Global. - 2292-2598. ; :2, s. 21-32
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Tidskriftsartikel (refereegranskat)abstract
- This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure environments for a group of school-aged children with severe disabilities, including complex disorders and a combination of disabilities.The purpose was to explore universal ELS; clarify how the children can be supported in their developmentof autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version(ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and participation in school or work were of highest importance, but few reported ELS involved directly interacting with otherchildren. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore, interventions would be focused on the overall goal that children with severe disabilities take initiatives to become independent and to form relationships with others.
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| 26. |
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| 31. |
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Codex and Code : Aestethcis, Language and Politics in an Age of Digital Media, NORLIT 2009, Stockholm, August 6-9, 2009
- 2010
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Samlingsverk (redaktörskap) (refereegranskat)abstract
- The conference Codex and Code: Aesthetics, Language and Politics in an Age of Digital Media (NorLit 2009)was held at the Royal Institute of Technology (KTH) in Stockholm, August 6–9, 2009. The conference was organized by the Nordic Association for Comparative Literature (NorLit); the Department of Culture and Communication, Linköping University; the School of Computer Science and Communication, Royal Institute of Technology (KTH); the Department of Comparative Literature, Stockholm University; the Department of Culture and Communication, Södertörn University College; and the Department of Comparative Literature, Uppsala University. The aim of the conference was to develop the study of Comparative Literature through Nordic collaboration both in its own discipline and in Modern Language and Cultural studies. As the title for the conference suggests, the principal question for the conference was the challenge that the study of literature encounters in an age of digitalization and globalization. It was our aim to encourage discussion of how literary studies respond to the ongoing changes in media and technology, politics and economy. Many have argued that the Humanities currently are in a state of crisis. We believe that the discipline seldom has found itself in such an interesting and fruitful historical moment. Several of these questions have surfaced during earlier media system changes, in particular during Romanticism and Modernism, which provided the conference with an historical frame. The conference Codex and Code also addressed questions of authenticity and originality, identity and gender, literary genres and reading practices, media and materiality, culture and popular culture, language and history, world literature, work aesthetics, translations, and canon formation. The conference Codex and Code wanted to stimulate interdisciplinary scholarly research of the literary in a broad sense. The conference was open to scholars in Comparative Literature and in Classical and Modern Languages, Aesthetics, Media and Communication studies, Film and Theatre studies, Philosophy and adjacent disciplines. The conference was organized around a number of thematic sessions in which researchers and scholars presented and discussed papers. The conference has received generous financial support from the Bank of Sweden Tercentenary Foundation, Magnus Bergwall foundation, Granholms foundation, Linköping University, School of Computer Science and Communication, Royal Institute of Technology, Svenska litteratursällskapet; the Swedish Academy, Swedish Science Council, and Vitterhetsakademien.
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| 32. |
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Codex and Code: Aestethcis, Language and Politics in an Age of Digital Media : NORLIT 2009, Stockholm, August 6-9, 2009
- 2010
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Proceedings (redaktörskap) (refereegranskat)abstract
- The aim of the conference was to develop the study of Comparative Literature through Nordic collaboration both in its own discipline and in Modern Language and Cultural studies. As the title for the conference suggests, the principal question for the conference was the challenge that the study of literature encounters in an age of digitalization and globalization. It was our aim to encourage discussion of how literary studies respond to the ongoing changes in media and technology, politics and economy. Many have argued that the Humanities currently are in a state of crisis. We believe that the discipline seldom has found itself in such an interesting and fruitful historical moment. Several of these questions have surfaced duringearlier media system changes, in particular during Romanticism and Modernism, which provided the conference with an historical frame. The conference Codex and Code also addressed questions of authenticity and originality, identity and gender, literary genres and reading practices, media and materiality, culture and popular culture, language and history, world literature, work aesthetics, translations, and canon formation.
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| 33. |
- Danermark, Berth D., 1951-, et al.
(författare)
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Deafblindness, ontological security, and social recognition
- 2008
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Ingår i: International Journal of Audiology. - : Informa UK Limited. - 1499-2027 .- 1708-8186. ; 47:s2, s. s119-s123
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Tidskriftsartikel (refereegranskat)abstract
- Trust, ontological security, and social recognition are discussed in relation to self-identity among people with acquired deafblindness. To date the phenomenon has not been elaborated in the context of deafblindness. When a person with deafblindness interacts with the social and material environment, the reliability, constancy, and predictability of his or her relations is crucial for maintaining or achieving ontological security or a general and fairly persistent feeling of well-being. When these relations fundamentally change, the impact on ontological security will be very negative. The construction of social recognition through the interaction between the self and others is embodied across three dimensions: at the individual level, at the legal systems level, and at the normative or value level. The relationship between trust and ontological security on the one hand and social recognition on the other hand is discussed. It is argued that these basic processes affecting personality development have to be identified and acknowledged in the interactions people with deafblindness experience. Some implications for the rehabilitation of people with acquired deafblindness are presented and illustrated.
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| 34. |
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| 35. |
- Durisala, Naresh, et al.
(författare)
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Determination and classification of the problems experienced by adults with single-sided deafness using ICF classification : an exploratory study using 26 participants
- 2017
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Ingår i: Clinical Otolaryngology. - : John Wiley & Sons. - 1749-4478 .- 1365-2273. ; 42:3, s. 748-752
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Tidskriftsartikel (refereegranskat)abstract
- 1. Previous studies have shown the application of ICF in classifying hearing problems using open ended questionnaire.2. The present study leveraged on that concept and used ICF in classifying hearing related problems and their effects on life style in adults with single-sided deafness.3. We have used "problem and life effects" questionnaire to which patients were asked to list the problems and effects of hearing loss on their lives.4. Apart from hearing and emotional related problems, use of an open ended questionnaire allowed tapping onto some of the non-auditory problems that these individuals may experience. 5.ICF classification provided basic information on the complex character of single sided deafness and can serve as a key element for rehabilitation.
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| 36. |
- Erdtman, Emil, et al.
(författare)
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Research initiation based on idea-circles : from research object to co-actor
- 2012
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Ingår i: Disability & Society. - Oxfordshire, United Kingdom : Routledge. - 0968-7599 .- 1360-0508. ; 27:6, s. 879-882
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Tidskriftsartikel (refereegranskat)abstract
- This article details an evaluation of a research project based on participatory research methods organized by the Swedish Disability Federation from 2008 to 2011. In Sweden there has been a lack of productive dialogue with the traditional academic world and the question was raised whether proposals for future research would be different if disabled people formulated them. Nine idea-circles with disabled participants and invited researchers from fields of interest close to the participants produced ideas, developed out of the life experience of being a disabled person. These ideas were developed into 72 research drafts that often reflected key advocacy areas, rather than operationalized research issues. The adjustment from the familiar discourse of political struggle to discussion of research was a complicated process for many. When asked to prioritize among areas for research, the representatives from the disability movement chose areas that are not stressed in mainstream disability research in Sweden.
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| 37. |
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| 38. |
- Frisén, Lars, et al.
(författare)
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Gender role behavior, sexuality, and psychosocial adaptation in women with congenital adrenal hyperplasia due to CYP21A2 deficiency
- 2009
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Ingår i: J Clin Endocrinol Metab. - : The Endocrine Society. ; 94:9, s. 3432-9
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Tidskriftsartikel (refereegranskat)abstract
- CONTEXT: Gender-atypical behavior has been described in young girls as well as in women with congenital adrenal hyperplasia (CAH) due to a CYP21A2 deficiency. OBJECTIVE: The aim of the study was to assess health-related, psychosexual, and psychosocial parameters and correlate the results to CYP21A2 genotype. DESIGN AND PARTICIPANTS: Sixty-two Swedish women with CAH and age-matched controls completed a 120-item questionnaire and a validated quality of life instrument [psychological general well-being (PGWB) formula] to identify psychosexual and psychosocial parameters. The patients were divided into four CYP21A2 genotype groups. RESULTS: The women with CAH held more male-dominant occupations (30%) compared to controls (13%) (P = 0.04), especially those in the null genotype group (55%) (P = 0.006). They also reported a greater interest in rough sports (74%) compared to controls (50%) (P = 0.007). Eight women with CAH (14%) reported a prime interest in motor vehicles, compared to none of the controls (P = 0.002). Non-heterosexual orientation was reported by 19% of women with CAH (P = 0.005), 50% in the null genotype group (P = 0.0001), 30% in I2 splice (NS), and 5% in I172N (NS). PGWB total score did not differ between patients and controls. CONCLUSION: We identified increased gender-atypical behavior in women with CAH that could be correlated to the CYP21A2 genotype. This speaks in favor of dose-dependent effects of prenatal androgens on the development of higher brain functions. The impact of the disease on upbringing and interpersonal relationships did not correlate with disease severity, indicating that other factors, such as coping strategies, are important for psychosocial adaptation. This illustrates the need for psychological support to parents and patients.
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| 39. |
- Gorkhover, Tais, et al.
(författare)
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Femtosecond X-ray Fourier holography imaging of free-flying nanoparticles
- 2018
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Ingår i: Nature Photonics. - : Springer Science and Business Media LLC. - 1749-4885 .- 1749-4893. ; 12:3, s. 150-153
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Tidskriftsartikel (refereegranskat)abstract
- Ultrafast X-ray imaging on individual fragile specimens such as aerosols 1 , metastable particles 2 , superfluid quantum systems 3 and live biospecimens 4 provides high-resolution information that is inaccessible with conventional imaging techniques. Coherent X-ray diffractive imaging, however, suffers from intrinsic loss of phase, and therefore structure recovery is often complicated and not always uniquely defined 4,5 . Here, we introduce the method of in-flight holography, where we use nanoclusters as reference X-ray scatterers to encode relative phase information into diffraction patterns of a virus. The resulting hologram contains an unambiguous three-dimensional map of a virus and two nanoclusters with the highest lateral resolution so far achieved via single shot X-ray holography. Our approach unlocks the benefits of holography for ultrafast X-ray imaging of nanoscale, non-periodic systems and paves the way to direct observation of complex electron dynamics down to the attosecond timescale.
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| 40. |
- Gustafsson, Johanna, et al.
(författare)
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Predictors of the first cardiovascular event in patients with systemic lupus erythematosus : a prospective cohort study
- 2009
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Ingår i: Arthritis Research & Therapy. - : Springer Science and Business Media LLC. - 1478-6362 .- 1478-6354. ; 11:6, s. R186-
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION :Cardiovascular disease (CVD) is a major cause of premature mortality among Systemic lupus erythematosus (SLE) patients. Many studies have measured and evaluated risk factors for premature subclinical atherosclerosis, but few studies are prospective and few have evaluated risk factors for hard endpoints, i.e. clinically important cardiovascular events (CVE). We investigated the impact of traditional and lupus associated risk factors for the first ever CVE in a longitudinal cohort of SLE patients.METHODS : A total of 182 SLE patients (mean age 43.9 years) selected to be free of CVE were included. Cardiovascular and autoimmune biomarkers were measured on samples collected after overnight fasting at baseline. Clinical information was collected at baseline and at follow up. End point was the first ever CVE (ischemic heart, cerebrovascular or peripheral vascular disease or death due to CVD). Impact of baseline characteristics/biomarkers on the risk of having a first CVE was evaluated with Cox regression.RESULTS :Follow up was 99.5% after a mean time of 8.3 years. Twenty-four patients (13%) had a first CVE. In age-adjusted Cox regression, any positive antiphospholipid antibody (aPL), elevated markers of endothelial activation (von Willebrand factor (vWf), soluble vascular cellular adhesion molecule-1 (sVCAM-1)) and fibrinogen predicted CVEs. Of SLE manifestations, arthritis, pleuritis and previous venous occlusion were positively associated with future CVEs while thrombocytopenia was negatively associated. Among traditional risk factors only age and smoking were significant predictors. In a multivariable Cox regression model age, any positive aPL, vWf and absence of thrombocytopenia were all predictors of the first CVE.CONCLUSIONS : In addition to age, positive aPL, biomarkers indicating increased endothelial cell activity/damage, and absence of thrombocytopenia were independent predictors of CVEs in this prospective study. Our results indicate that activation of the endothelium and the coagulation system are important features in SLE related CVD. Furthermore, we observed that the risk of CVEs seems to differ between subgroups of SLE patients.
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| 41. |
- Gustafsson, Johanna T, et al.
(författare)
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Cigarette smoking, antiphospholipid antibodies and vascular events in Systemic Lupus Erythematosus
- 2015
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Ingår i: Annals of the Rheumatic Diseases. - : BMJ. - 0003-4967 .- 1468-2060. ; 74:8, s. 1537-1543
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Smoking can induce autoantibodies in persons who are genetically predisposed to rheumatoid arthritis. We investigated the association between smoking and antiphospholipid antibodies (aPL) in systemic lupus erythematosus (SLE), a question not previously addressed. Further, we explored the relationship between smoking, aPL and vascular events (arterial and venous, VE).METHODS: In this cross-sectional study, clinical evaluation and questionnaire data were collected from 367 prevalent SLE patients. At the same time, we measured aPL (anticardiolipin (aCL), anti-β2 glycoprotein-1 (aβ2GP1) antibodies IgG/IgM/IgA, and lupus anticoagulant (LA)), and a large set of other SLE-associated autoantibodies for comparison. Association analyses using logistic regression models with smoking, (ever, former and current with never as reference) and antibody status as outcome variable were performed. As a secondary outcome, we investigated the associations between aPL, smoking and VE.RESULTS: In multivariable-adjusted models ever, and in particular former, cigarette smoking was associated with the most pathogenic aPL; LA, aCL IgG and aβ2GP1 IgG. Other SLE-associated autoantibodies were not associated with smoking. The combination of smoking and aPL was strongly associated with VE. We noted a positive interaction between smoking-LA and smoking-'triple aPL' positivity for previous VE.CONCLUSIONS: We investigated a large set of commonly occurring autoantibodies in SLE, but only aPL were positively associated with a history of smoking. This association was especially apparent in former smokers. Among ever regular smokers who were aPL positive, we observed a strikingly high frequency of former VE. The underlying mechanisms and temporality between smoking, aPL and VE need further investigations.
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| 42. |
- Jemtå, Lena, 1965-
(författare)
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Children and Adolescents Living with Mobility Impairment
- 2008
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: This thesis aims to describe perceived overall well-being, coping strategies, experiences of intimacy and sexuality, and global and dimension-specific self-esteem among children and adolescents with mobility impairment. Methods: The study included 141 children and adolescents aged 7–18 years with mobility impairment. Data was gathered by comprehensive semi-structured interviews and the self-report inventories “Children’s Coping Strategies Checklist” (CCSC) and “I Think I am”. Perceived overall well-being was measured by the nine-grade visual “Snoopy scale”. Motor function and pain were measured by the BL motor assessment, and independence or dependence by Katz Index of Independence in Activities of Daily Living. Results: The majority reported a favourable level of perceived overall well-being and positive global and dimension-specific self-esteem. Lower global self-esteem was significantly related to: greater age, being a first-generation immigrant, having an acquired disease or injury and experience of pain, while lower level of perceived overall well-being was significantly related to all of these in addition to not living with both parents. Generally, children and adolescents identified themselves as sexual beings and most expressed future aspirations as living together with partner having children. However, many had limited or no experience of partner-related intimacy and sexual activities, and socio-demographic and disability characteristics had a marginal influence. A history of sexual abuse was reported by 7% in the age cohort 13–18 years. A four-dimensional model of coping strategies including “active coping”, “distraction”, “avoidance” and “support seeking” strategies provided an adequate fit to the CCSC data. Three of the four strategies, all except “avoidance”, were significantly related to several demographic and disability features. Well-being was not significantly related to coping strategies, although the higher the trust in the strategies, the higher the estimation of well-being. Conclusion: The understanding of vulnerability factors as well as identification of coping strategies among children and adolescents with mobility impairment is essential for providing proper care, treatment and support during childhood and adolescence.
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| 43. |
- Kollén, Lena, 1960-, et al.
(författare)
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Physical functioning in older persons with dizziness : a population-based study
- 2017
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Ingår i: Aging Clinical and Experimental Research. - : Springer. - 1594-0667 .- 1720-8319. ; 29:2, s. 197-205
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Tidskriftsartikel (refereegranskat)abstract
- Background: Dizziness is one of the most prevalent symptoms in old age and tends to increase with age.Aims: To report physical functioning, health-related aspects and gender differences in elderly persons with and without dizziness in a population-based sample of 75-year-olds.Methods: A cross-sectional sample of 75-year-olds from Gothenburg, Sweden (n = 675, 398 women and 277 men) was examined by means of questionnaires and functional tests. The questions concerned dizziness/imbalance, physical activity level, walking habits, falls efficacy, number of falls, subjective health or general fatigue and medication. The tests included were self-selected and maximum gait speed, stair climbing capacity, one leg stance and grip strength.Results: More women than men reported dizziness/imbalance (40 vs 30 %, p < 0.001). Persons with dizziness, compared to those without dizziness, less often regularly exercised at a moderate intensity level (summer: 62 vs 74 %, p < 0.001; winter: 41 vs 51 %, p < 0.001), less often took a daily walk (p < 0.05), had lower scores on the FES(S) (p < 0.001), more often reported general fatigue (p < 0.001), more often had fallen in the previous year (40 vs 23 %, p < 0.001) and had a higher intake of medical drugs (4.6 vs 3.3, p < 0.001). They also performed worse regarding gait speed, stair climbing and one leg stance (p < 0.001), but there was no difference in grip strength.Conclusion: Older persons with dizziness are less physically active, have worse lower extremity function, are more often fallers and report lower self-rated health than persons without dizziness.
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| 44. |
- Kortsari, Annie, et al.
(författare)
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Recommendations for future policy support and research needs
- 2010
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Rapport (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this work and of the present document is to propose guidelines and recommendations for the European Commission and other research bodies and policy agencies towards policy-making, as well as to define future research priorities in the thematic area of seasonal variations of transport demand sustainable mobility.
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| 45. |
- Lundh, Kerstin, et al.
(författare)
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Contact allergy to herbal teas derived from Asteraceae plants
- 2006
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Ingår i: Contact Dermatitis. - : Wiley. - 0105-1873 .- 1600-0536. ; 54:4, s. 196-201
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Tidskriftsartikel (refereegranskat)abstract
- Contact allergy to herbal teas derived from the Asteraceac plant family was investigated in patients allergic to sesquiterpene lactones (SLs). 20 patients with a known contact allergy to SLs were recalled and patch tested with aqueous extracts of 8 different herbal teas based on Asteraceae plants as well as with parthenolide and other SLs. In 18 of 20 patients with SL allergy, there were positive test reactions to the Asteraceae teas, mainly to those based on German chamomile, dandelion and wormwood. Among the SLs, parthenolide was the most frequent co-reactor. Obviously, most patients with a contact allergy to SLs are allergic to commercial teas derived from the Asteraceae plant family as well.
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| 46. |
- Lundh, Kerstin, et al.
(författare)
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Patch testing with thin-layer chromatograms of chamomile tea in patients allergic to sesquiterpene lactones.
- 2007
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Ingår i: Contact Dermatitis. - : Wiley. - 0105-1873 .- 1600-0536. ; 57:4, s. 218-223
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Tidskriftsartikel (refereegranskat)abstract
- Patients with contact allergy to sesquiterpene lactones (SLs) are usually hypersensitive to Asteraceae plant products such as herbal teas. The objective of this study was to show sensitizers in chamomile tea by patch testing with thin-layer chromatograms. Tea made from German chamomile was separated by thin-layer chromatography. Strips of the thin-layer chromatograms were used for patch testing SL-positive patients. 15 (43%) of 35 patients tested positively to 1 or more spots on the thin-layer chromatogram, with many individual reaction patterns. Patch testing with thin-layer chromatograms of German chamomile tea showed the presence of several allergens.
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| 47. |
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| 48. |
- Möller, Kerstin
(författare)
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Deafblindness: a challenge for assessment - is the ICF a useful tool?
- 2003
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Ingår i: International Journal of Audiology. - : Informa Healthcare. - 1499-2027 .- 1708-8186. ; 42, s. S140-S142
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Tidskriftsartikel (refereegranskat)abstract
- A strain of Saccharomyces cerevisiae lacking the GPD2 gene, encoding one of the glycerol-3-phosphate dehydrogenases, grows slowly under anaerobic conditions, due to reductive stress caused by the accumulation of cytoplasmic NADH. We used 2D-PAGE to study the effect on global protein expression of reductive stress in the anaerobically grown gpd2 strain. The most striking response was a strongly elevated expression of Tdh1p, the minor isoform of glyceraldehyde-3-phosphate dehydrogenase. This increased expression could be reversed by the addition of acetoin, a NADH-specific redox sink, which furthermore largely restored anaerobic growth of the gpd2 strain. Additional deletion of the TDH1 gene (but not of TDH2 or TDH3) improved anaerobic growth of the gpd2 strain. We therefore propose that TDH1 has properties not displayed by the other TDH isogenes and that its expression is regulated by reductive stress caused by an excess of cytoplasmic NADH.
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| 49. |
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| 50. |
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