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Participation in everyday life for adults with profound intellectual (and multiple) disabilities
Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.ORCID iD: 0000-0003-0305-7929
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 [en]
everyday life, participation, profound intellectual and multiple disability, social care
National Category
Social Work
Research subject
Social Work
Identifiers
URN: urn:nbn:se:mdh:diva-40177ISBN: 978-91-7485-394-0 (print)OAI: oai:DiVA.org:mdh-40177DiVA, id: diva2:1230447
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
List of papers
1. Staffs’ documentation of participation for adults with profound intellectualdisability or profound intellectual and multiple disabilities
Open this publication in new window or tab >>Staffs’ documentation of participation for adults with profound intellectualdisability or profound intellectual and multiple disabilities
2018 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 21, p. 2527-2537Article in journal (Refereed) Published
Abstract [en]

Purpose: This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation.

Methods: A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool.

Results: One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented.

Conclusions: A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group.

  • Implications for rehabilitation
  • There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities.

  • For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan.

  • The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual’s functioning in their environment is not omitted in documentation.

National Category
Social Work
Identifiers
urn:nbn:se:mdh:diva-40173 (URN)10.1080/09638288.2017.1340979 (DOI)000446621800007 ()28633543 (PubMedID)2-s2.0-85021127139 (Scopus ID)
Available from: 2018-07-03 Created: 2018-07-03 Last updated: 2019-11-17
2. Staff and managers’ conceptions of participation for adults with profound intellectual disabilities or profound intellectual and multiple disabilities
Open this publication in new window or tab >>Staff and managers’ conceptions of participation for adults with profound intellectual disabilities or profound intellectual and multiple disabilities
(English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011Article in journal (Refereed) Submitted
National Category
Social Work
Identifiers
urn:nbn:se:mdh:diva-40174 (URN)
Available from: 2018-07-03 Created: 2018-07-03 Last updated: 2019-11-17
3. Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities
Open this publication in new window or tab >>Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities
2019 (English)In: JARID: Journal of applied research in intellectual disabilities, ISSN 1360-2322, E-ISSN 1468-3148, Vol. 32, no 1, p. 143-151Article in journal (Refereed) Published
Abstract [en]

Background

Participation is a central aspect of quality of life, and it is indicative of high‐quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities.

Aim

To describe staff members’ perceptions of what participation means for adults with profound intellectual and multiple disabilities.

Method

Using a phenomenographic approach, 27 interviews were analysed resulting in variations in the conditions for participation.

Results

The interviews revealed conditions for participation at individual, staff and organisational levels.

Conclusion

Participation appears to be an un‐reflected phenomenon, and several conditions must be met to achieve it. The conditions are experienced being fundamental for adults within the target group to achieve any kind of participation. The staff members and managers’ perceptions of participation as conditional can make it more difficult for adults within the target group to achieve the Swedish disability policy goal of participation.

National Category
Social Work
Identifiers
urn:nbn:se:mdh:diva-40175 (URN)10.1111/jar.12516 (DOI)000458679000013 ()29998545 (PubMedID)2-s2.0-85050675304 (Scopus ID)
Available from: 2018-07-03 Created: 2018-07-03 Last updated: 2019-11-17
4. Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier’s ladder of participation?
Open this publication in new window or tab >>Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier’s ladder of participation?
(English)In: Journal of Intellectual Disabilities, ISSN 1744-6295, E-ISSN 1744-6309Article in journal (Refereed) Submitted
National Category
Social Work
Identifiers
urn:nbn:se:mdh:diva-40176 (URN)
Available from: 2018-07-03 Created: 2018-07-03 Last updated: 2019-11-17

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