title: Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs.
abstract: BACKGROUND
  People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life.
  
  
  METHODS
  Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110 people with severe and profound disabilities and complex needs.
  
  
  RESULTS
  On average, people spent approximately 40% of their time engaged in meaningful activities, received contact from staff 25% of the time (6% in the form of assistance to be engaged). Just over one-third received consistently good active support, which was associated with other measures of quality of support and emerged as the strongest predictor of outcomes.
  
  
  CONCLUSIONS
  Quality of life and quality of support were relatively poor, although with about one-third of people receiving skilled support. Consistently good active support was the best predictor of outcome and proposed as a good indicator of skilled support.
authors.affiliation: Tizard Centre, University of Kent, Canterbury, UK.|Living with Disability Centre, School of Allied Health, La Trobe University, Bundoora, Vic., Australia.
authors.forename: J
authors.initials: J
authors.lastname: Beadle-Brown
authors.affiliation: Tizard Centre, University of Kent, Canterbury, UK.
authors.forename: J
authors.initials: J
authors.lastname: Leigh
authors.affiliation: Tizard Centre, University of Kent, Canterbury, UK.
authors.forename: B
authors.initials: B
authors.lastname: Whelton
authors.affiliation: Tizard Centre, University of Kent, Canterbury, UK.
authors.forename: L
authors.initials: L
authors.lastname: Richardson
authors.affiliation: PSSRU, University of Kent, Canterbury, UK.
authors.forename: J
authors.initials: J
authors.lastname: Beecham
authors.affiliation: PSSRU, University of Kent, Canterbury, UK.
authors.forename: T
authors.initials: T
authors.lastname: Baumker
authors.affiliation: Tizard Centre, University of Kent, Canterbury, UK.
authors.forename: J
authors.initials: J
authors.lastname: Bradshaw
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000451:nursing* / Q000523:psychology; D008297:Male; D008875:Middle Aged; D018802:Patient-Centered Care / Q000592:standards*; D019989:Persons with Intellectual Disabilities / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D055815:Young Adult
keywords: active support; complex needs; quality of life; quality of support