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

J Appl Res Intellect Disabil. 2019 Jan;32(1):143-151. doi: 10.1111/jar.12516. Epub 2018 Jul 11.

Abstract

Background: Participation is a central aspect of quality of life, and it is indicative of high-quality outcomes for people with intellectual disabilities. However, participation is difficult to achieve for adults with profound intellectual and multiple disabilities.

Aim: To describe staff members' perceptions of what participation means for adults with profound intellectual and multiple disabilities.

Method: Using a phenomenographic approach, 27 interviews were analysed resulting in variations in the conditions for participation.

Results: The interviews revealed conditions for participation at individual, staff and organisational levels.

Conclusion: Participation appears to be an un-reflected phenomenon, and several conditions must be met to achieve it. The conditions are experienced being fundamental for adults within the target group to achieve any kind of participation. The staff members and managers' perceptions of participation as conditional can make it more difficult for adults within the target group to achieve the Swedish disability policy goal of participation.

Keywords: intellectual disability practice; participation; perceptions; phenomenography; profound intellectual and multiple disabilities.

MeSH terms

  • Activities of Daily Living*
  • Adult
  • Aged
  • Disabled Persons / rehabilitation*
  • Female
  • Group Homes
  • Health Personnel*
  • Home Care Services
  • Humans
  • Intellectual Disability / rehabilitation*
  • Male
  • Middle Aged
  • Persons with Mental Disabilities / rehabilitation
  • Qualitative Research
  • Social Participation*
  • Young Adult