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

Abstract

People with intellectual disabilities are dependent in many ways on the support of others if they are to have access to social life, services and support in society. In order to participate in various activities, they need intellectual and social support. This means that participation for them, depends in several ways on other people´s willingness to facilitate and promote participation. This imposes high demands on those professionals providing formal support for them. Hence, the overall aim of this thesis was to explore and describe from four perspectives the experiences of everyday life and participation for people with intellectual disabilities. The thesis contains four qualitatively oriented studies, which have evolved over time. Studies I-II, including participant observations and interviews, and were conducted in group homes with staff and adults with intellectual disabilities. Furthermore, it emerged that adults with intellectual disabilities experienced different limitations in their everyday life, which indicates a lack of opportunity for participation (Study II). From the findings of these two studies, it became clear that participation is a central focus and that leadership is of particular significance for how participation is implemented; therefore, interviews were conducted with service managers (Study III). Lastly, within the framework of this thesis, the aim was directed at focus groups with significant others as the fourth perspective to provide a broad framing of what participation can mean for people with intellectual disabilities. Despite the fact that the disability policy has contributed to improvements for this target group, there are currently extensive shortcomings. This study has revealed deficiencies such as the lack of working methods to help staff facilitate participation (Study I); the lack of care worker´ continuity and the existence of many routines and rules in the group homes (Study II); more overarchingly, the financial situation was not adequate to promote participation (Studies III and IV). Consequently, there were also strengths and opportunities for a good everyday IV. Berlin Hallrup L., Kumlien C., Carlson E. (2019) Participation in Everyday Life for People with Intellectual Disabilities in Sweden. The Experiences of Significant Others'. Manuscript submitted to the Journal of Applied Research in Intellectual Disabilities.

As if living like others: An idealisation of life in group homes for people with intellectual disability

“…Further, the use of coercive and restrictive measures is not uncommon even though they are illegal (Health and Social Care Inspectorate, 2020). These facts should lead to a lively discussion about the very assumption that group homes are suitable services for vulnerable people, when inadequately staffed, and led by managers who cannot be present as they often manage several services (Berlin Hallrup, 2019;NBHW, 2020). Is the aim of policies and legislation truly to enable people with ID to live like others?…”

“…I would argue that one consequence of de-differentiation is that there is very little, to say no research on how to support adults with ID in their everyday lives in a Swedish context. There are excellent studies on lived experiences in a group home (see e.g., Jormfeldt, 2016;Lövgren, 2013), and on staff and organisations (Berlin Hallrup, 2019). There is, however, an obvious lack of studies on how to support adults to live self-determined lives and to enable their full participation in community, by using certain methods and/or communicative aids.…”