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Physical and psychological health, social trust and financial situation for persons with Usher syndrome type 1
Örebro University, School of Health Sciences.
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.ORCID iD: 0000-0002-4455-7826
Örebro University, School of Health Sciences.ORCID iD: 0000-0001-6557-6359
Örebro University, School of Health Sciences.ORCID iD: 0000-0003-2690-6989
2016 (English)In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809, Vol. 34, no 1, 15-25 p.Article in journal (Refereed) Published
Abstract [en]

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 crosssection 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 €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.

Place, publisher, year, edition, pages
London, United Kingdom: Sage Publications, 2016. Vol. 34, no 1, 15-25 p.
Keyword [en]
Deafblindness, health, physical health, psychological health, social trust, Usher syndrome 1
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:oru:diva-47253DOI: 10.1177/0264619615610158OAI: oai:DiVA.org:oru-47253DiVA: diva2:889705
Available from: 2015-12-28 Created: 2015-12-28 Last updated: 2016-12-16Bibliographically approved

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Wahlqvist, MoaMöller, KerstinMöller, ClaesDanermark, Berth
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School of Health SciencesSchool of Health and Medical Sciences, Örebro University, Sweden
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CiteExportLink to record
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Citation style
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