Staff’s and Managers’ Conceptions of Participation for Adults with Profound Intellectual Disabilities or Profound Intellectual and Multiple Disabilities

Abstract

One goal of disability policies in Sweden and other countries is to ensure that people with disabilities are afforded an equal level of daily life participation as other citizens. However, few studies have examined this in adults with profound intellectual disabilities (PID) or profound intellectual and multiple disabilities (PIMD). This study used a phenomenographic approach to interview managers and staff at a social care organisation in a medium-sized Swedish municipality. It aimed to elucidate and describe conceptions of participation to highlight conceptual variations. Divergent conceptualisations were found, reflecting a lack of organisational consensus about the meaning of participation. Trying to fulfil policy goals of daily life participation for adults with PID or PIMD without a common understanding of the meaning of participation is difficult, so people at all levels of an organisation need to have a shared understanding and definition of it.

Participation in daily life for adults with profound intellectual (and multiple) disabilities: How high do they climb on Shier’s ladder of participation?

“…The results from the observations also show that staff members often draw on their own preferences when making decisions for adults with PI(M)D, which is consistent with the results of earlier research (Dunn et al, 2010; Talman et al, 2019). The results show that staff members did not think the adults with PI(M)D were capable of making decisions, as the staff often made decisions for them.…”

“…Although the results from Talman et al (2019) found a lack of definitions and support for the staff members responsible for participation, this study demonstrated that the adults with PI(M)D reached the first three levels of participation. This study's result also shows that staff members work diligently to increase participation with the adults with PI(M)D for whom they care.…”

“…This confidence in their own knowledge limits their ability to invite the adults with PI(M)D into the decision-making process since the staff members believe they already know the adults’ preferences, which supports earlier research (e.g. Talman et al, 2018, 2019). Moreover, other studies over many years have shown that adults with PI(M)D are seldom or never invited to participate in decision-making (Furenhed, 1997; Johnson et al, 2012; Mansell et al, 2008).…”

“…In addition, low quality of support leads to social isolation and disengagement among adults with PI(M)D (Beadle-Brown et al, 2016). However, Talman et al (2019) show that blame for the adult’s lack of participation falls not only on staff members but also on an inadequate definition of participation in the social care organization and a lack of support for the staff members responsible for participation. From that perspective, it was considered important to observe how participation is actually conducted in PI(M)Ds’ daily lives.…”

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

“…Each interview lasted between 10 and 30 min and was conducted in a place decided by the informant. Earlier, these interviews had been used to analyse and problematize the respondents’ conceptions of what participation is for adults with PIMD (Talman, Wilder, Stier, & Gustafsson, ). In the interviews, the opening question was: What does participation mean for adults with PIMD?…”