The public defence of Lena Talman’s doctoral thesis in Social Work
Doctoral thesis and Licentiate seminars
The public defense of Lena Talman’s doctoral thesis will take place at Mälardalen University, room Filharmonin (Eskilstuna Campus) at 13.15 on September 28, 2018.
Title: ”Participation in everyday life for adults with profound intellectual (and multiple) disabilities”.
The faculty examiner is lecturer Jens Ineland, Umeå University, and the examining committee consists of professor Elisabeth Olin, Göteborg University, lecturer Thomas Strandberg, Örebro University, and professor Christian Kullberg, Mälardalen UNiversity.
Adults with profound intellectual (and multiple) disabilities need society’s support in their everyday lives to live under “as normal circumstances” as possible. The support should be carried out in accordance with the Swedish disability policy vision; “a good life”, which means full participation in society and equality in living conditions as well as conditions for independence and self-determination.
The aim of the thesis was to highlight and problematize perceptions of participation, how participation is described in implementation plans and how participation is implemented in the everyday lives of adults with profound intellectual (and multiple) disabilities, living in a group home or in their own home with support from personal assistance. To answer the aim and gain a deeper understanding of the phenomenon of participation both quantitative and qualitative methods were used. The thesis included three studies. One study were 17 implementation plans were analysed, focusing on what was written about participation. One study were 27 managers and staff members, working in social care, were interviewed about their perceptions of what participation for adults with profound intellectual (and multiple) disabilities is, and one study were four adults with profound intellectual (and multiple) disabilities (living in group home) and their 13 staff, were observed to see how staff members worked to facilitate participation for the adults.
The results showed that the participation in everyday life, which was documented in the implementation plans for the adults with profound intellectual (and multiple) disabilities focused on personal care and social community, social and civic life. When managers and staff members were interviewed about what participation is for the adults, results shows that they think that participation is abstract and difficult to manage. However, they argued that participation of adults with profound intellectual (and multiple) disabilities mainly is about that the adults must perform (e.g. eating by themselves) or be present (e.g. be in their apartment when staff members is cleaning) in daily activities. The conditions needed for facilitating participation were the adult’s capability, staff member’s knowledge and recourses in the organisations. At the observations, it was revealed that staff members were listening to the adult’s wishes. The adults were supported in expressing their views and their views were taken into account but they were not involved in decision-making processes nor did they share the power and responsibility for decision-making.