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Assessment of participation in people with a mild intellectual disability

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Doctoral Dissertation

Assessment of participation

in people with a mild intellectual

disability

patrik arviDsson

Disability Science

Studies from The Swedish Institute for Disability Research 55

2013

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patrik arvidsson (1969) works as a clinical psychologist at the Adults’ Habilitation Services, County Council of Gävleborg. He is affiliated with the multidisciplinary research groups SIDR (Swedish Institute for Disability Research) and CHILD (Children-Health-Intervention-Learning-Development). His main interests concern assessment and supportive interventions in persons with intellectual disability.

Individuals with intellectual disability are at high risk for health problems and participation restrictions. Individualized support, as from clinical services, will improve general well-being and thus reduce the likelihood for participation restrictions. However, due to problems in expressing their needs, individuals with intellectual disability are often at the mercy of trusting proxy-persons. Therefore, a main issue in clinical services is to develop methods to get accurate knowledge about needs and preferences of the individual. The International Classification of Functioning, Disability and Health (ICF) provides an integrative approach to disability and the ICF participation concept is assumed to reflect the functional interplay between body functions of an individual and the everyday environment. The qualifier performance is suggested as an appropriate evaluator of participation but there has been raised a need for a qualifier reflecting the perceived values of the individual. This doctoral thesis is built on four studies with the aim to explore a self-assessment of participation, partly by investigating the contribution of a perceived qualifier, in people with a mild intellectual disability. Participation is explored in 68 everyday activities from all nine life domains according to the ICF. The thesis concludes that if the main interest of participation is at a group level, and if the main questions are focused on frequency of involvement, actual performance may well be sufficient to assess participation. Thus, the performance aspect solely might be essential in for example services concerned about legal rights and public health. However, if the individuals’ own perceptions of involvement are critical, such as in planning and evaluating supportive interventions, a measure of actual performance in combination with perceived importance is needed. These combinations, expressed as important participation and important participation restriction, are considered to capture both the attendance aspect of participation and the perceived involvement aspect.

issn 1650-1128 isbn 978-91-7668-974-5

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