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

Abstract

Participation is the goal of Swedish disability policy, but it is difficult to achieve for adults with profound intellectual (and multiple) disabilities (PI(M)D). Since these adults are dependent on others in every aspect of their lives, others control their ability to participate in everyday life decisions. This study used observations, analyzed with Shier’s ladder of participation, to elucidate and describe participation in daily life for adults with PI(M)D living in a group home. The results showed that the adults often reached the first three levels of Shier’s ladder, one adult reached the fourth level once, and no one reached the fifth level. Participation on a higher level, therefore, seems hard to reach for adults. Staff members’ attitudes toward the adults’ capability can also be a barrier to participation. Applying Shier’s ladder of participation can provide valuable information that might lead to increased participation in daily life for adults with PI(M)D.

The utility of goal attainment scaling in evaluating a structured water dance intervention for adults with profound intellectual and multiple disabilities

“…In order to make it even more relevant for adults with PIMD, an operationalisation of participation should thus not only include actual performance in existing activities but also include possible involvement in new daily activities (Hanzen et al, 2017;World Health Organization, 2001). However, due to communicative and cognitive limitations in for example imagining possible new activities to be involved in, adults with PMID will need support to be able to both set and evaluate relevant goals (Granlund et al, 2014;Hanzen et al, 2018Hanzen et al, , 2020Talman et al, 2021).…”

“…In our case, AF is an experienced physiotherapist who has worked with the target group for over 25 years. However, most goals were levelled out after the mid-intervention evaluation, which could mean that we could have set new goals for the period after the mid-intervention and involve the participants more in the decision making processes (Talman et al, 2021).…”

“…A checklist for judging the quality of GAS has been developed by Krasny-Pacini et al (2016), who proposed a set of 17 criteria. These criteria are intended for research rather than clinical contexts, addressing validity and reliability criteria, other factors such as the Specific, Measurable, Achievable, Relevant and Timed (SMART) criteria, and the ICF categorization of goal types (Talman et al, 2021;World Health Organization, 2001). Using the ICF to classify the participants' goals can be considered a strength because it directly relates the goal to the person's functioning and health.…”

Online activities for individuals with intellectual disabilities at a day centre in the wake of COVID‐19

“…Residents with profound intellectual and multiple disabilities often are given too few alternatives and too little time to be able to make a choice. This “inability” to make choices is too often interpreted by staff as a consequence of their impairment (Stefánsdóttir et al, 2018 ; Talman et al, 2021 ).…”

An observation study of power practices and participation in group homes for people with intellectual disability

“…A home is a fundamental aspect of constructions of identity, social relationships, independence and participation (Annison 2000;Sixsmith 1986;Tideman 2000). Research on group homes for people with intellectual disability labels has often focused on residents' living conditions, on the content of the provided services and on support staffs' management and promotion of residents' autonomy and decision-making (see Kåhlin 2015;Talman 2018;Tideman 2000). Due to their intellectual disability labels, residents in group homes have been viewed as unable to make well-founded choices (Hellzen, Haugenes, and € Ostby 2018; Talman et al 2019).…”