Staff experiences of participation in everyday life of older people with intellectual disability who live in group homes

Abstract

This article aims to explore ways in which members of staff in group homes for people with intellectual disability experience participation, and what participation means for older people with intellectual disability. Qualitative interviews were performed with 15 members of staff at group homes in Sweden. The findings of this study are illustrated by considering two interacting themes and six subthemes. These involve staff experiences of the meaning of participation and factors which facilitate or inhibit it. The meaning of participation was expressed as doing and feeling. Staff described that participation for older people with intellectual disability was influenced by the individual characteristics of the residents, such as the relationship between age and disability. They also expressed the view that participation was influenced by organizational and physical contextual factors such as economics, time and space as well as the social environment. The latter included staff knowledge and skills, family and peers.

Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities

“…Yes, it is absolutely true, and we have experienced staff around adults with PIMD. Another condition for participation that emerged in the interviews is that the organisation needs to be supportive and adequate, which is consistent with the findings reported by Kåhlin et al (2014). (Manager 3) individual characteristics that inhibit participation, as described by Kåhlin et al (2014), were also found in the present study; however, Kåhlin et al's finding that an inhibiting factor for participation was limited social contacts outside the group home was not brought up by the managers or staff members in the interviews in the present study.…”

Choice and control for people ageing with intellectual disability in group homes

“…We therefore argue that discussions on occupational justice (36-37) for older people with ID need to be influenced by a life course perspective (see for example [54][55]59). This study, and others (22,38), could inform such a discussion. The life course perspective regards ageing as a dynamic process brought about by an interaction between individual, social and historical factors over time (59).…”

“…The conditions for participation for older people with ID in everyday life and the community are thought to be closely related to contextual factors (22). Supportive social environments foster continuity, communion and a sense of coherence (23)(24)(25)(26), and arrangements in the physical environment, such as use of technical devices, can be vital for participation for this group of people (27)(28)(29)(30).…”

“…An earlier study (22) showed that the residents' age is important for the staff's perceptions and attitudes regarding participation among older residents. In that study, the concept of participation was described both as a social contextual doing, and as an aspiration to create a sense of coherence or experience of meaning and security in the everyday life of the group home.…”

“…This makes semi-private spaces an interesting context to study, particularly in relation to the older residents' individual and collective choice and control. They are especially interesting since older people with ID tend to spend more of their time at home, and in these semi-private spaces (21)(22)38). With this background, the aim of this study is to explore how choice and control in the everyday life of people ageing with ID is expressed and performed in the group home´s semi-private spaces.…”