| 1. |
- Danermark, Berth, 1951-, et al.
(author)
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The Creation of a Comprehensive and a Brief Core Set for Hearing Loss Using the International Classification of Functioning, Disability and Health
- 2013
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In: American Journal of Audiology. - : American Speech Language Hearing Association. - 1059-0889 .- 1558-9137. ; 22:2, s. 323-328
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Journal article (peer-reviewed)abstract
- Purpose: In May 2001, to integrate biological, psychological, and social aspects of human functioning, the World Health Assembly endorsed the International Classification of Functioning, Disability and Health (ICF). The aim of this article is to describe the creation of Comprehensive and Brief ICF Core Sets for Hearing Loss. The core sets consist of the most relevant ICF categories for hearing loss. Method and Results: Four preparatory studies were carried out and presented at a consensus conference, resulting in a Comprehensive ICF Core Set for Hearing Loss, consisting of 117 ICF categories, and a Brief ICF Core Set for Hearing Loss, consisting of 27 categories (of the 117). Conclusion: The Comprehensive ICF Core Set for Hearing Loss can be a user-friendly tool for conducting comprehensive, multidisciplinary assessments. The Brief ICF Core Set can be used for many purposes, such as research and population studies. However, its most common use is by individuals seeking to provide a brief description and assessment of functioning of a person with hearing loss.
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| 2. |
- Ehn, Mattias, 1972-, et al.
(author)
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Health, work, social trust, and financial situation in persons with Usher syndrome type 1
- 2018
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In: Work. - : IOS Press. - 1051-9815 .- 1875-9270. ; 60:2, s. 209-220
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Journal article (peer-reviewed)abstract
- BACKGROUND: Research has demonstrated that persons with Usher syndrome type 1 (USH1) have significantly poorer physical and psychological health compared to a reference group.PURPOSE: To explore the relation between work, health, social trust, and financial situation in USH1 compared to a reference group.MATERIAL: Sixty-six persons (18-65 y) from the Swedish Usher database received a questionnaire and 47 were included, 23 working and 24 non-working. The reference group comprised 3,049 working and 198 non-working persons.METHODS: The Swedish Health on Equal Terms questionnaire was used and statistical analysis with multiple logistic regression was conducted.RESULTS: The USH1 non-work group had a higher Odds ratio (95% CI) in poor psychological and physical health, social trust, and financial situation compared to the USH1 work group and reference groups. Age, gender, hearing, and vision impairment did not explain the differences. The relation between the USH1 work and non-work groups showed the same pattern as the reference groups, but the magnitude of problems was significantly higher.CONCLUSIONS: Both disability and unemployment increased the risk of poor health, social trust and financial situation in persons with USH1, but having an employment seemed to counteract the risks related to disability.
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| 3. |
- Ehn, Mattias, 1972-, et al.
(author)
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The relationship between work and health in persons with Usher syndrome type 2
- 2016
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In: 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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Journal article (peer-reviewed)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-, et al.
(author)
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The ICF core sets for hearing loss project : International expert survey on functioning and disability of adults with hearing loss using the International classification of functioning, disability, and health (ICF)
- 2014
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In: International Journal of Audiology. - : Informa Healthcare. - 1499-2027 .- 1708-8186. ; 53:8, s. 497-506
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Journal article (peer-reviewed)abstract
- Objective: To identify relevant aspects of functioning, disability, and contextual factors for adults with hearing loss (HL) from hearing health professional perspective summarized using the ICF classification as reference tool.Design: Internet-based cross-sectional survey using open-ended questions. Responses were analysed using a simplified content analysis approach to link concept to ICF categories according to linking rules.Study sample: Hearing health professionals (experts) recruited through e-mail distribution lists of professional organizations and personal networks of ICF core set for hearing loss steering committee members. Stratified sampling according to profession and world region enhanced the international and professional representation.Results: Sixty-three experts constituted the stratified sample used in the analysis. A total of 1726 meaningful concepts were identified in this study, resulting in 209 distinctive ICF categories, with 106 mentioned by 5% or more of respondents. Most categories in the activities & participation component related to communication, while the most frequent environmental factors related to the physical environment such as hearing aids or noise. Mental functions, such as confidence or emotional functions were also frequently highlighted.Conclusions: More than half (53.3%) of the entire ICF classification categories were included in the expert survey results. This emphasizes the importance of a multidimensional tool, such as the ICF, for assessing persons with hearing loss.
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| 5. |
- Granberg, Sarah, 1973-, et al.
(author)
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The ICF core sets for hearing loss project : Functioning and disability from the patient perspective
- 2014
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In: International Journal of Audiology. - London, UK : Informa Healthcare. - 1499-2027 .- 1708-8186. ; 53:11, s. 777-786
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Journal article (peer-reviewed)abstract
- Objective: To explore areas of functioning, disability, and environmental factors of adults with hearing loss (HL) by using the ICF classification as a tool to determine and document each element. Design: A qualitative study applying mainly focus-group methodology was applied.Study sample: Thirty-six Dutch and South African adults (18 years of age) with HL (20–95 dB HL) who used oral communication as first communication. Summative content analysis was performed on the transcripts by linkage to appropriate ICF categories.Results: 143 ICF categories were identified, most of which belonged to the Activities & Participation (d) component, closely followed by the Environmental factors component. Participants specifically mentioned categories related to oral communication and interaction. Assistive technology (such as hearing aids), noise, and support by and attitudes of others in the environment of the participants were considered highly influential for functioning and disability.Conclusions: The present study illustrates the complex and encompassing nature of aspects involved in functioning and disability of adults with HL. Findings highlight the necessity of using a multidimensional tool, such as the ICF, to map functioning and disability with hearing loss, allowing consideration and evaluation of aspects that are both internal and external.
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| 7. |
- Wahlqvist, Moa, 1979-, et al.
(author)
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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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In: Journal of Visual Impairment & Blindness. - : American Foundation for the Blind. - 0145-482X .- 1559-1476. ; 110:4, s. 245-256
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Journal article (peer-reviewed)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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| 8. |
- Wahlqvist, Moa, 1979-, et al.
(author)
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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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In: The British Journal of Visual Impairment. - London, United Kingdom : Sage Publications. - 0264-6196 .- 1744-5809. ; 34:1, s. 15-25
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Journal article (peer-reviewed)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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| 9. |
- Wahlqvist, Moa, 1979-, et al.
(author)
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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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In: Frontiers in Psychology. - : Frontiers. - 1664-1078. ; 11
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Journal article (peer-reviewed)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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