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The relation between proxy-ratings and self-ratings of participation in people with a mild intellectual disability
Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Centre for Clinical Research, County Council of Gävleborg and Uppsala University, Gävle, Sweden.
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: In people with intellectual disability, knowledge about ability and participation is highly relevant for support planning and intervention evaluation. Self-rated aspects of participation might not be the same as those obtained from a proxy-person (relative, peer or staff person).

Specific Aims: This study explored the relation between self-ratings and proxyratings regarding some clinically important aspects of ability and participation.

Method: A structured interview study of 40 individuals with intellectual disability and 40 proxy-persons within a Swedish municipality. Data were analysed regarding internal consistency, correlations and comparisons of mean scores.

Findings: Internal consistency in terms of Cronbach’s alpha showed high levels and similar patterns between self-ratings and proxyratings of ability, performance and importance. Correlations between self-ratings and proxyratings showed significant positive correlations for ability and performance, as well as for the combined measures ‘important participation’ and ‘important participation restriction’. Mean scores of self-rated importance and self-rated ‘important participation restriction’ was significantly higher than the same proxy-rated measures. The mean score of self-rated ability was significantly higher than proxy-rated ability. The mean scores of performance and ‘important participation’ were almost identical.

Discussion: The findings showed that selfratings and proxy-ratings are correlated but that there are differences in the levels of ratings of ability and ‘important participation restriction’. Knowledge about both perspectives is important but the study indicates that the perceived aspect of the person with intellectual disability and ratings by a proxy-person are not interchangeable. The study does not evaluate the results in terms of right or wrong, but highlights that awareness about similarities and differences between self-ratings and proxy-ratings is essential in clinical practices.

Keywords [en]
participation, ICF, intellectual disabilities, self-ratings and proxy ratings
National Category
Social Work
Research subject
Disability Research
Identifiers
URN: urn:nbn:se:oru:diva-32544OAI: oai:DiVA.org:oru-32544DiVA, id: diva2:667450
Available from: 2013-11-26 Created: 2013-11-26 Last updated: 2017-10-17Bibliographically approved
In thesis
1. Assessment of participation in people with a mild intellectual disability
Open this publication in new window or tab >>Assessment of participation in people with a mild intellectual disability
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this doctoral thesis was to explore an assessment of participation according to the International Classification of Functioning, Disability and Health (ICF) in people with a mild intellectual disability.

Study I used secondary data and explored how participation can be assessed. Study II-IV explored participation empirically regarding 68 everyday activities from all nine life domains according to the ICF. Study II explored assessment of self-rated participation by investigating to what extent perceived ability, actual performance and perceived importance correlated. Study III-IV explored the contribution of perceived importance to an assessment of participation; study III by investigating frequencies of everyday activities regarding performance and importance separately as well as regarding combined measures of performance and perceived importance, and study IV by comparing proxy ratings with self-rated measures regarding ability and measures of participation. Study III also correlated measures of participation with a single-item measure of subjective general well-being and study II and IV investigated internal consistency in terms of Cronbach’s alpha. Study II and III included 55 and 69 individuals with intellectual disability respectively. Study IV included 40 individuals with intellectual disability and 40 proxy persons. The informants from the target group were partly the same.

Study II and IV supported the suggestions from study I that participation should be assessed by self-ratings and study II found that this is an appropriate method also to people with a mild intellectual disability. Study III showed that participation is related to subjective well-being. Study III-IV found somewhat different results if measuring participation as performance solely or as a combination of performance and perceived importance. Overall, the results of the thesis suggest that performance solely might be sufficient to assess participation at a group level but in a clinical context, when the knowledge of a certain individual is of interest, the perceived aspect of involvement is necessary to include in an assessment of participation.

Place, publisher, year, edition, pages
Örebro: Örebro universitet, 2013. p. 89
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 55
Keywords
assessment, clinimetrics, ICF, intellectual disability, participation, participation restrictions, self-ratings
National Category
Social Work
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-32018 (URN)978-91-7668-974-5 (ISBN)
Public defence
2013-11-22, Hörsal P2, Prismahuset, Örebro universitet, Fakultetsgatan 1, 701 82, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2013-10-15 Created: 2013-10-15 Last updated: 2017-10-17Bibliographically approved

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