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Assessment of participation in people with a mild intellectual disability
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
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. , 89 p.
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 55
Keyword [en]
assessment, clinimetrics, ICF, intellectual disability, participation, participation restrictions, self-ratings
National Category
Social Work
Research subject
Disability Research
Identifiers
URN: urn:nbn:se:oru:diva-32018ISBN: 978-91-7668-974-5 (print)OAI: oai:DiVA.org:oru-32018DiVA: diva2:656273
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: 2013-11-28Bibliographically approved
List of papers
1. Differentiating activity and participation of children and youth with disability in Sweden: a third qualifier in the International Classification of Functioning, Disability, and Health for Children and Youth?
Open this publication in new window or tab >>Differentiating activity and participation of children and youth with disability in Sweden: a third qualifier in the International Classification of Functioning, Disability, and Health for Children and Youth?
Show others...
2012 (English)In: American Journal of Physical Medicine & Rehabilitation, ISSN 0894-9115, E-ISSN 1537-7385, Vol. 91, no 13 Suppl 1, s84-s96 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: This article discusses the use of a third qualifier, subjective experience of involvement, as a supplement to the qualifiers of capacity and performance, to anchor activity and participation as separate endpoints on a continuum of actions.

DESIGN: Empirical data from correlational studies were used for secondary analyses. The analyses were focused on the conceptual roots of the participation construct as indicated by the focus of policy documents, the support for a third qualifier as indicated by correlational data, differences between self-ratings and ratings by others in measuring subjective experience of involvement, and the empirical support for a split between activity and participation in different domains of the activity and participation component.; RESULTS: Participation seems to have two conceptual roots, one sociologic and one psychologic. The correlational pattern between the qualifiers of capacity, performance, and subjective experience of involvement indicates a possible split between activity and participation. Self-ratings of participation provide information not obtained through ratings by others, and later domains in the activities and participation component fit better with measures of experienced involvement than earlier domains did.

CONCLUSIONS: The results from secondary analyses provide preliminary support for the use of a third qualifier measuring subjective experience of involvement to facilitate the split between activity and participation in the International Classification of Functioning, Disability and Health, Children and Youth version, activity and participation domain.

National Category
Social Work
Research subject
Social Work
Identifiers
urn:nbn:se:oru:diva-32505 (URN)10.1097/PHM.0b013e31823d5376 (DOI)000208868800012 ()
Available from: 2013-11-22 Created: 2013-11-22 Last updated: 2017-02-21Bibliographically approved
2. International classification of functioning, disability and health categories explored for selfrated participation in swedish adolescents and adults with a mild intellectual disability
Open this publication in new window or tab >>International classification of functioning, disability and health categories explored for selfrated participation in swedish adolescents and adults with a mild intellectual disability
2012 (English)In: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 44, no 7, 562-569 p.Article in journal (Refereed) Published
Abstract [en]

Objective: To explore internal consistency and correlations between perceived ability, performance and perceived importance in a preliminary selection of self-reported items representing the activity/participation component of the International Classification of Functioning, Disability and Health (ICF).

Design: Structured interview study. Subjects: Fifty-five Swedish adolescents and adults with a mild intellectual disability.

Methods: Questions about perceived ability, performance and perceived importance were asked on the basis of a 3-grade Likert-scale regarding each of 68 items representing the 9 ICF domains of activity/participation.

Results: Internal consistency for perceived ability (Cron-bach's alpha for all 68 items): 0.95 (values for each domain varied between 0.57 and 0.85), for performance: 0.86 (between 0.27 and 0.66), for perceived importance: 0.84 (between 0.27 and 0.68). Seventy-two percent of the items showed correlations >0.5 (mean =0.59) for performance vs perceived importance, 41% >0.5 (mean =0.47) for perceived ability vs performance and 12% >0.5 (mean =0.28) for perceived ability vs perceived importance.

Conclusion: Measures of performance and perceived importance may have to be based primarily on their estimated clinical relevance for describing aspects of the ICF participation concept. With a clinimetric approach, parts of the studied items and domains may be used to investigate factors related to different patterns and levels of participation, and outcomes of rehabilitation.

Place, publisher, year, edition, pages
Uppsala, Sweden: Foundation Rehabilitation Information, 2012
Keyword
Clinimetrics, psychometrics, rehabilitation
National Category
Social Work
Research subject
Disability Science
Identifiers
urn:nbn:se:oru:diva-32541 (URN)10.2340/16501977-0976 (DOI)000305814900008 ()22674238 (PubMedID)2-s2.0-84865971822 (Scopus ID)
Available from: 2013-11-26 Created: 2013-11-26 Last updated: 2016-06-07Bibliographically approved
3. Important aspects of participation and participation restrictions in people with a mild intellectual disability
Open this publication in new window or tab >>Important aspects of participation and participation restrictions in people with a mild intellectual disability
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Purpose This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability.

Method Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n=69). The items were ranked by perceived importance, performance and by combined measures. Also, the measures were related to a single question about subjective general well-being.

Results Rankings of performance highlighted about the same items as ‘important participation’, while rankings of low performance addressed quite different items compared with ‘important participation restriction’. Significant correlations were found between subjective general well-being and: high performance (r=0.56), high performance/high importance (‘important participation’) (r=0.56), low performance (r=-0.56), and low performance/high importance (‘important participation restriction’ (r=-0.55).

Conclusions The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation.

Keyword
Assessment, ICF, intellectual disability, participation, self-ratings
National Category
Social Work
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-32543 (URN)
Available from: 2013-11-26 Created: 2013-11-26 Last updated: 2013-11-26Bibliographically approved
4. The relation between proxy-ratings and self-ratings of participation in people with a mild intellectual disability
Open this publication in new window or tab >>The relation between proxy-ratings and self-ratings of participation in people with a mild intellectual disability
(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.

Keyword
participation, ICF, intellectual disabilities, self-ratings and proxy ratings
National Category
Social Work
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-32544 (URN)
Available from: 2013-11-26 Created: 2013-11-26 Last updated: 2013-11-26Bibliographically approved

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