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- 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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| 2. |
- 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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| 5. |
- 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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| 9. |
- 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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| 10. |
- 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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