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Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier’s ladder of participation?
Mälardalen University, School of Health, Care and Social Welfare. (Welfare research; Prolonged Independent Living (PriLiv))ORCID iD: 0000-0003-0305-7929
Dalarna university, Sweden.
Stockholm university, Sweden.
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. (PRILIV)ORCID iD: 0000-0002-9821-9945
2021 (English)In: Journal of Intellectual Disabilities, ISSN 1744-6295, E-ISSN 1744-6309, Vol. 25, no 1, p. 98-113Article in journal (Refereed) Published
Abstract [en]

Participation is the goal of Swedish disability policy, but it is difficult to achieve for adults with profound intellectual (and multiple) disabilities (PI(M)D). Since these adults are dependent on others in every aspect of their lives, others control their ability to participate in everyday life decisions. This study used observations, analyzed with Shier’s ladder of participation, to elucidate and describe participation in daily life for adults with PI(M)D living in a group home. The results showed that the adults often reached the first three levels of Shier’s ladder, one adult reached the fourth level once, and no one reached the fifth level. Participation on a higher level, therefore, seems hard to reach for adults. Staff members’ attitudes toward the adults’ capability can also be a barrier to participation. Applying Shier’s ladder of participation can provide valuable information that might lead to increased participation in daily life for adults with PI(M)D.

Place, publisher, year, edition, pages
2021. Vol. 25, no 1, p. 98-113
National Category
Social Work
Identifiers
URN: urn:nbn:se:mdh:diva-40176DOI: 10.1177/1744629519863959ISI: 000478327200001Scopus ID: 2-s2.0-85101932532OAI: oai:DiVA.org:mdh-40176DiVA, id: diva2:1230428
Available from: 2018-07-03 Created: 2018-07-03 Last updated: 2021-12-16Bibliographically 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 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. Shier’s ladder of participation can be an instrument to increase participation in daily life for adults with PI(M)D.

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: 2018-12-14Bibliographically approved

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Talman, LenaGustafsson, Christine

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