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Comparison of reports by relatives and staff on living conditions of adults with intellectual disabilities
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
2006 (English)In: Mental retardation (Washington, D.C. Print), ISSN 0047-6765, Vol. 44, no 2, 120-127 p.Article in journal (Refereed) Published
Abstract [en]

Proxies typically serve as information providers in studies of persons with intellectual disabilities. However, little is known about the concordance between different proxy categories and how proxy characteristics influence the information provided. We compared 89 pairs of relative and staff reports on the living conditions of persons with intellectual disabilities, using percentage agreement and Cohen's kappa statistics. Results demonstrate differences between relative and staff reports for most of the domains investigated, with moderate agreement for objective items and fair agreement for subjective items. Relative and staff proxies contributed different information related to diverse viewpoints and varying types of information. Thus, we suggest that information provided by proxies should not be treated as being interchangeable but, rather, as complementary.

Place, publisher, year, edition, pages
2006. Vol. 44, no 2, 120-127 p.
Keyword [en]
Activities of Daily Living/*classification, Adult, Aged, Disability Evaluation, Female, Group Homes/*legislation & jurisprudence, Humans, Male, Mentally Disabled Persons/*legislation & jurisprudence/psychology, Middle Aged, Observer Variation, Proxy/*legislation & jurisprudence, Reproducibility of Results, Residence Characteristics, Social Environment, Socioeconomic Factors, Sweden
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-23236DOI: 10.1352/0047-6765(2006)44[120:CORBRA]2.0.CO;2PubMedID: 16689612OAI: oai:DiVA.org:uu-23236DiVA: diva2:51010
Available from: 2007-01-26 Created: 2007-01-26 Last updated: 2017-12-07Bibliographically approved
In thesis
1. Living Conditions of People with Intellectual Disabilities: A Study of Health, Housing, Work, Leisure and Social Relations in a Swedish County Population
Open this publication in new window or tab >>Living Conditions of People with Intellectual Disabilities: A Study of Health, Housing, Work, Leisure and Social Relations in a Swedish County Population
2005 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The general aim of this thesis is to describe mortality, health and living conditions in an administratively defined county population of people with intellectual disabilities born between 1959 and 1974 (N=213). The living conditions of persons with intellectual disabilities were compared with those of the general population. Moreover, the reports of relatives and staff were compared on the living conditions of people with intellectual disabilities. Information on the living conditions of persons with intellectual disabilities was provided by proxy (relative and staff) questionnaire reports and national welfare statistics conducted by Statistics Sweden (SCB). Medical examination and medical case records were used to obtain data on health and medical services.

People with intellectual disabilities lived in the community and took part in numerous common recreational and cultural activities. However, the comparison with the general population indicated clear differences in living conditions, particularly regarding employment and social life. In contrast, surprisingly little variation in living conditions was found in people with intellectual disabilities, despite varying ages and a wide range of level of disabilities. In addition, gender related differences of persons with intellectual disabilities were few when compared with those found in the general population. A wide range of physical and mental health problems were identified in the group with intellectual disabilities.

Although a majority of persons with intellectual disabilities had access to a family doctor and attended regular health checks, a number of needs of specialist examinations were identified indicating shortcomings in the quality of health care.

Analyses indicated differences in the reports of relatives and staff on living conditions of most domains included in the questionnaire. In general, disagreement was higher on subjective than on objective items. Relative and staff responders contribute dissimilar information that is related to varying viewpoints and different types of information.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2005. 58 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 89
Keyword
Disability studies, intellectual disabilities, living conditions, health conditions, mortality, associated disabilities, gender, comparative study, proxy responding, Handikappforskning
National Category
Social Work
Identifiers
urn:nbn:se:uu:diva-6143 (URN)91-554-6405-X (ISBN)
Public defence
2005-12-16, Föreläsningssalen, Museum Gustavianum, Akademigatan 3, Uppsala, 13:15 (English)
Opponent
Supervisors
Available from: 2005-11-25 Created: 2005-11-25 Last updated: 2011-02-08Bibliographically approved

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Umb-Carlsson, ÕieSonnander, Karin

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