Participation in everyday life for adults with profound intellectual (and multiple) disabilities

Sammanfattning: 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