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Health and People with Usher syndrome
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Örebro: Örebro university , 2015. , 118 p.
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 76
Keyword [en]
Usher syndrome, Deafblindness, Health, General Health, Physical Health, Psychological Health, Social Trust, Financial Situation
National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Disability Research
Identifiers
URN: urn:nbn:se:oru:diva-46059ISBN: 978-91-7529-098-0 (print)OAI: oai:DiVA.org:oru-46059DiVA: diva2:860267
Public defence
2015-11-13, Prismahuset, Hörsal 2, Örebro universitet, Fakultetsgatan 1, Örebro, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-10-12 Created: 2015-10-12 Last updated: 2016-12-16Bibliographically approved
List of papers
1. Physical and psychological health in persons with deafblindness that is due to Usher Syndrome Type II
Open this publication in new window or tab >>Physical and psychological health in persons with deafblindness that is due to Usher Syndrome Type II
2013 (English)In: Journal of Visual Impairment & Blindness, ISSN 0145-482X, E-ISSN 1559-1476, Vol. 107, no 3, 207-220 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
New York, USA: American Foundation for the Blind, 2013
Keyword
Usher Synddrome, Physical Health, Psychological Health, Sex Differences, Health
National Category
Public Health, Global Health, Social Medicine and Epidemiology Otorhinolaryngology
Research subject
Disability Science
Identifiers
urn:nbn:se:oru:diva-29013 (URN)000209257700005 ()2-s2.0-84877262611 (Scopus ID)
Funder
Swedish Research Council
Note

Funding Agency:

Hearing Foundation 

Swedish Association of Hard of Hearing People 

Available from: 2013-05-30 Created: 2013-05-13 Last updated: 2017-03-23Bibliographically approved
2. Health among Persons with Usher syndrome type 3, Implications of Deafblindness
Open this publication in new window or tab >>Health among Persons with Usher syndrome type 3, Implications of Deafblindness
(English)Article in journal (Refereed) Submitted
Place, publisher, year, edition, pages
USA: American Foundation for the Blind
Keyword
Usher syndrome, Physical Health, Mental Health, Social Trust, Cochlear Implants, Health
National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-41171 (URN)
Available from: 2015-01-13 Created: 2015-01-13 Last updated: 2016-12-16Bibliographically approved
3. Physical and Psychological Health, Social Trust and Financial Situation for persons with Usher syndrome type 1
Open this publication in new window or tab >>Physical and Psychological Health, Social Trust and Financial Situation for persons with Usher syndrome type 1
2015 (English)In: The British Journal of Visual Impairment, ISSN 0264-6196, E-ISSN 1744-5809Article in journal (Refereed) Accepted
Place, publisher, year, edition, pages
London, United Kingdom: Sage Publications, 2015
National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:oru:diva-46189 (URN)
Available from: 2015-10-20 Created: 2015-10-19 Last updated: 2017-02-08Bibliographically approved
4. Similarities and Differences in Health, Social trust and Financial situation in people with Usher syndrome, a bio- psychosocial perspective
Open this publication in new window or tab >>Similarities and Differences in Health, Social trust and Financial situation in people with Usher syndrome, a bio- psychosocial perspective
(English)Manuscript (preprint) (Other academic)
National Category
Otorhinolaryngology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:oru:diva-46187 (URN)
Available from: 2015-10-19 Created: 2015-10-19 Last updated: 2016-12-16Bibliographically approved

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