The prerequisites for QoL of people with intellectual disabilities

Abstract

Quality of life (QoL) is seldom described in terms of the essence of what it is. Also, an essential task for the research community is to create space for the voices of people with intellectual disabilities. The aim of the present study was to understand the lived meaning and the essence of QoL in adults with this disability. Using a phenomenological approach, 21 informants living in a Swedish county were interviewed. The interviews were audio taped and analyzed with the empirical phenomenological psychological method. The results indicate that the general essence of QoL consists of well-being and five themes: social adult status, control of life, personal safety, social belonging and self-chosen solitude. The results challenge the stereotype of the informants as passive receivers of support from others. The interrelatedness between the five themes of QoL should be further studied.

Active adult lives for persons with learning disabilities—The perspectives of professionals

“…To be regarded as adults has proved to be very important for individuals with learning disabilities (Umb‐Carlsson & Lindstedt, ). However, there are indications that people with learning disabilities often have to struggle to be recognised as adults (Kittelsaa & Kermit, ).…”

Editorial Review: Touring the Archive 1999–2017 and Mapping the Future of Scandinavian Journal of Disability Research

“…Particularly visible are human rights-based approaches (Katsui & Kumpuvuori, 2008) influenced by Marshall's (1950) account of citizenship, which emphasises the importance of social welfare and societal participation for people to have active citizenship rights. From this perspective several studies have explored how to strengthen disabled people's "membership of society" through social rights (Christensen et al, 2014), enabling them to actively participate in society -rather than being passive receivers of support (Umb-Carlsson & Lindstedt, 2011). This work stresses factors such as social adult status, control of life, personal safety, social belonging and self-chosen solitude in producing varied forms of active citizenship (Umb-Carlsson & Lindstedt, 2011).…”

“…From this perspective several studies have explored how to strengthen disabled people's "membership of society" through social rights (Christensen et al, 2014), enabling them to actively participate in society -rather than being passive receivers of support (Umb-Carlsson & Lindstedt, 2011). This work stresses factors such as social adult status, control of life, personal safety, social belonging and self-chosen solitude in producing varied forms of active citizenship (Umb-Carlsson & Lindstedt, 2011). In new pieces coming through the Journal now we are seeing this expansive discussion of citizenship requirements continue.…”

Quality of Life Is to Experience Adult Social Status

“…The Uppsala QoL (UQoL) is an empirically derived operational model. The first step in model development has been to describe the structure of QoL and its essence from the perspective of adults with ID (Umb‐Carlsson & Lindstedt, ). The overall aim was to contribute to our understanding of the QoL construct from the perspective of those concerned, that is, people with ID.…”

“…Using a phenomenological approach (Karlsson, ), information was obtained by individual interviews with 21 adults with mild and moderate ID. Details are described elsewhere (Umb‐Carlsson & Lindstedt, ). Jointly with previous research, the first version (in this paper called the original UQoL ) suggests that the general essence of QoL is to experience well‐being (Figure ).…”