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Staff and managers’ conceptions of participation for adults with profound intellectual disabilities or profound intellectual and multiple disabilities
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.ORCID iD: 0000-0003-0305-7929
Stockholm university, Sweden.
Dalarna university, Sweden.
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.ORCID iD: 0000-0002-9821-9945
(English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011Article in journal (Refereed) Submitted
National Category
Social Work
Identifiers
URN: urn:nbn:se:mdh:diva-40174OAI: oai:DiVA.org:mdh-40174DiVA, id: diva2:1230411
Available from: 2018-07-03 Created: 2018-07-03 Last updated: 2018-08-14Bibliographically approved
In thesis
1. Participation in everyday life for adults with profound intellectual (and multiple) disabilities
Open this publication in new window or tab >>Participation in everyday life for adults with profound intellectual (and multiple) disabilities
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Adults with profound intellectual (and multiple) disabilities need society’s support to live under “as normal circumstances” as possible. Support should be carried out in accordance with the Swedish disability policy vision of full participation in community and equality in living conditions.

Aim: To highlight and problematise the conceptualisation of participation, and how participation is achieved in implementation plans and in everyday life for adults with profound intellectual (and multiple) disabilities living in a group home or in their own home with support from personal assistants.

Method: Quantitative and qualitative methods were used to gain a deeper understanding of participation. In study I, 17 implementation plans were analysed. In study II, 27 social care managers and staff members were interviewed. In study III, 4 adults with profound intellectual (and multiple) disabilities living in a group home and their 13 staff members were observed.

Results: Documentation of participation focused on self-care and community, social, and civic life. In interviews with staff members and managers, the results showed that participation is abstract and hard to handle. Participation for the adults was mostly about doing or being present in general daily activities. The conditions needed for facilitating participation were the adults’ capabilities, staff members’ knowledge, and resources in the social division. Moreover, the adults were listened to, supported in expressing their views, and their views were taken into account. However, they were not involved in decision-making processes nor did they share the power and responsibility for decision-making.

Conclusions: Participation for the adults is conditional, seldom involves decision-making processes, and is hardly ever connected to social contacts and leisure activities. In addition, attitudes about the adults’ capability present a barrier to participation. The social care division need to better enable and facilitate participation by changing the conditions as well as educating the staff around changing their attitudes about the adults’ capabilities. Managers and staff members need to have a shared understanding of what participation entails so that they all work in the same direction. Furthermore, the International Classification of Functioning, Disability and Health (ICF) can be used as a tool when drawing up individual plans so that the adults’ wishes and preferences are considered.

Keywords: everyday life, participation, profound intellectual and multiple disability, social care

Place, publisher, year, edition, pages
Eskilstuna: Mälardalen University, 2018
Series
Mälardalen University Press Dissertations, ISSN 1651-4238 ; 266
Keywords
everyday life, participation, profound intellectual and multiple disability, social care
National Category
Social Work
Research subject
Social Work
Identifiers
urn:nbn:se:mdh:diva-40177 (URN)978-91-7485-394-0 (ISBN)
Public defence
2018-09-28, Filharmonin, Mälardalens högskola, Eskilstuna, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2018-07-04 Created: 2018-07-03 Last updated: 2018-08-16Bibliographically approved

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Talman, LenaGustafsson, Christine

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