Experiences of everyday life and participation for people with intellectual disabilities : from four perspectives

Sammanfattning: People with intellectual disabilities are dependent in many ways on the support ofothers if they are to have access to social life, services and support in society. Inorder to participate in various activities, they need intellectual and social support.This means that participation for them, depends in several ways on other people´swillingness to facilitate and promote participation. This imposes high demands onthose professionals providing formal support for them. Hence, the overall aim ofthis thesis was to explore and describe from four perspectives the experiences ofeveryday life and participation for people with intellectual disabilities. The thesiscontains four qualitatively oriented studies, which have evolved over time. StudiesI-II, including participant observations and interviews, and were conducted ingroup homes with staff and adults with intellectual disabilities. Furthermore, itemerged that adults with intellectual disabilities experienced different limitationsin their everyday life, which indicates a lack of opportunity for participation (StudyII). From the findings of these two studies, it became clear that participation is acentral focus and that leadership is of particular significance for how participationis implemented; therefore, interviews were conducted with service managers (Study III). Lastly, within the framework of this thesis, the aim was directed atfocus groups with significant others as the fourth perspective to provide a broadframing of what participation can mean for people with intellectual disabilities.Despite the fact that the disability policy has contributed to improvements forthis target group, there are currently extensive shortcomings. This study hasrevealed deficiencies such as the lack of working methods to help staff facilitateparticipation (Study I); the lack of care worker´ continuity and the existence ofmany routines and rules in the group homes (Study II); more overarchingly, thefinancial situation was not adequate to promote participation (Studies III and IV).Consequently, there were also strengths and opportunities for a good everyday life and for participation. All four perspectives are important as, together, theycontribute with a deeper understanding of what participation is and is not, inrelation to people with ID. From the findings presented in this thesis, it can be saidthat participation is double-edged as the four studies highlight both the absenceand presence of participation.