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Long-term ophthalmic health care in Usher syndrome type I from an ICF perspective
Örebro University, School of Health and Medical Sciences.
Örebro University, School of Health and Medical Sciences.ORCID iD: 0000-0001-6557-6359
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2009 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 31, no 15, p. 1283-1292Article in journal (Refereed) Published
Abstract [en]

 

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.

Place, publisher, year, edition, pages
Taylor & Francis, 2009. Vol. 31, no 15, p. 1283-1292
National Category
Medical and Health Sciences
Research subject
Medicine
Identifiers
URN: urn:nbn:se:oru:diva-2959DOI: 10.1080/09638280802519669ISI: 000268212200008PubMedID: 19280439Scopus ID: 2-s2.0-70350437864OAI: oai:DiVA.org:oru-2959DiVA, id: diva2:135786
Available from: 2008-04-04 Created: 2008-04-04 Last updated: 2017-12-14Bibliographically approved
In thesis
1. Impact on participation and service for persons with deafblindness
Open this publication in new window or tab >>Impact on participation and service for persons with deafblindness
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Örebro: Örebro universitet, 2008. p. 111
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 26
Keyword
deafblindness, ICF, participation restriction, service barrier, Usher Syndrome
National Category
Social Sciences Social Sciences Social Work Social Work
Research subject
Medical Disability Research
Identifiers
urn:nbn:se:oru:diva-2027 (URN)978-91-7668-595-2 (ISBN)
Public defence
2008-04-25, Aulan, B, Örebro universitet, SE -701 82 Örebro, 13:00 (English)
Opponent
Supervisors
Available from: 2008-04-04 Created: 2008-04-04 Last updated: 2017-10-18Bibliographically approved

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Möller, KerstinMöller, ClaesDanermark, Berth

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