The meaning of the lived experiences of adults with intellectual disabilities in a Swedish institutional care setting: a reflective lifeworld approach

Abstract

This study describes the meaning of the lived experiences of adults with intellectual disabilities in a Swedish institutional care setting. Despite the general intention of the Swedish law to give care and support for adults with intellectual disabilities in small settings in the community, large institutional care settings exist in Sweden. It is also known that adults with intellectual disabilities have more influence over their care and support when living in small settings than in large institutions. There is a dearth research in regard to studies that focus on how adults with intellectual disabilities experiences their everyday life in such settings. A qualitative design was used to gain a deeper understanding of the lived experiences of adults with intellectual disabilities in an institutional care setting in Sweden. Fieldwork from September 2006 to June 2009 in an institutional care setting including participant observation and in-depth interviews with 12 residents was used. Verbatim-transcribed text was analysed using a phenomenological reflective lifeworld approach. The essential picture of the phenomenon was experienced 'as a meaningful and meaningless existence' and was reflected in residents' descriptions of their everyday life in the setting. It was characterised by the constituents: ambiguous dependency, social interactions and everyday life in a restricted area. The results reveal the importance of paying close attention to what adults with intellectual disabilities have to say about their everyday life when living in an institutional care setting. For caring practices of people with intellectual disabilities, it is scarcely satisfactory that residents experience an ambivalent dependency and of having to live in a restricted area. The results of this study contribute to better insight and deeper knowledge of the lived experiences of adults with intellectual disabilities, enabling the staff and management to further enhance the well-being for residents. In addition, the findings provide feedback to staff, managers and researchers working in the intellectual disabilities field.