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  • 1.
    Talman, Lena
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Participation in everyday life for adults with profound intellectual (and multiple) disabilities2018Doctoral 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

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  • 2.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Evaluation of Tovertafel UP2020Report (Other academic)
    Abstract [en]

    The purpose of the project was to evaluate the staff’s experience of using Tovertafel UP at a daily activities centre and determine whether, according to the staff, the use of Tovertafel UP results in any development for people with intellectual disabilities with focus on physical activities and social interaction.

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    Evalution of Tovertafel UP
  • 3.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Utvärdering av Tovertafel UP2020Report (Other academic)
    Abstract [sv]

    Syftet med projektet var att utvärdera personals erfarenheter av att använda Tovertafel UP på en daglig verksamhet för personer med intellektuell funktionsnedsättning och om användandet av Tovertafel UP enligt personalen innebar någon utveckling för användarna med fokus på fysiska aktiviteter och social interaktion.

    Download full text (pdf)
    Utvärdering av Tovertafel UP
  • 4.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Stier, Jonas
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Staffs’ documentation of participation for adults with profound intellectualdisability or profound intellectual and multiple disabilities2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 21, p. 2527-2537Article in journal (Refereed)
    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.

  • 5.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare.
    Stier, Jonas
    Dalarna university, Sweden.
    Wilder, Jenny
    Stockholm university, Sweden.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier’s ladder of participation?In: Journal of Intellectual Disabilities, ISSN 1744-6295, E-ISSN 1744-6309Article in journal (Refereed)
  • 6.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics.
    Stier, Jonas
    Mälardalen University, School of Business, Society and Engineering. Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Participation for adults with profound intellectual disabilities: Perceptions of managers and staff2016In: Journal of Intellectual Disability Research, ISSN 0964-2633, E-ISSN 1365-2788, Vol. 60, no 7-8, p. 812-812Article in journal (Other academic)
  • 7.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics. Stockholm Univ, Stockholm, Sweden..
    Stier, Jonas
    Mälardalen University, School of Business, Society and Engineering. Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. Dalarna Univ, Falun, Sweden..
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier's ladder of participation?2019In: Journal of Intellectual Disabilities, ISSN 1744-6295, E-ISSN 1744-6309, article id UNSP 1744629519863959Article in journal (Refereed)
    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.

  • 8.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, jenny
    Stockholm university, Sweden.
    Stier, Jonas
    Dalarna university, Sweden.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Staff and managers’ conceptions of participation for adults with profound intellectual disabilities or profound intellectual and multiple disabilitiesIn: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011Article in journal (Refereed)
  • 9.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Wilder, Jenny
    Mälardalen University, School of Education, Culture and Communication, Educational Sciences and Mathematics. Stockholm university, Sweden.
    Stier, Jonas
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare. Dalarna university, Sweden.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities2019In: 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)
    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.

  • 10.
    Talman, Lena
    et al.
    Mälardalen University, School of Health, Care and Social Welfare.
    Wilder, Jenny
    Stockholm University, Sweden.
    Stier, Jonas
    Dalarna University, Sweden.
    Gustafsson, Christine
    Mälardalen University, School of Health, Care and Social Welfare, Health and Welfare.
    Staff’s and managers’ conceptions of participation for adults with profound intellectual disabilities or profound intellectual and multiple disabilities2019In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 21, no 1, p. 78-88Article in journal (Refereed)
    Abstract [en]

    One goal of disability policies in Sweden and other countries is to ensure that people with disabilities are afforded an equal level of daily life participation as other citizens. However, few studies have examined this in adults with profound intellectual disabilities (PID) or profound intellectual and multiple disabilities (PIMD). This study used a phenomenographic approach to interview managers and staff at a social care organisation in a medium-sized Swedish municipality. It aimed to elucidate and describe conceptions of participation to highlight conceptual variations. Divergent conceptualisations were found, reflecting a lack of organisational consensus about the meaning of participation. Trying to fulfil policy goals of daily life participation for adults with PID or PIMD without a common understanding of the meaning of participation is difficult, so people at all levels of an organisation need to have a shared understanding and definition of it.

1 - 10 of 10
CiteExportLink to result list
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Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf