gerber, F., Baud, M.A., Giroud, M., & Galli Carminati, G. (2008). Quality of life of adutls with pervasive developmental disorders and intellectual disabilities.  JADD, DOI on paper

• most quality of life measures require verbal ability
• typically, measured by proxy (someone answers for them)
• Persson (2008) - seems a problem to evaluate quality of life through performance in everyday activities
  • direct measures are more appropriate?
  • composed of three levels:
    • micro - individual and family
    • meso - service delivery organizations
    • macro - society and culture
  • this paper - focus is on the individual
• definition of quality of life - well-being of a person in an adapted environment
• how does quality of life differ in different residential treatment setting?
  • 1 - based on TEACCH
    • most people in Switzerland did not have EI - lots of behavioral issues
    • adapted to the Swiss - PAMS - mostly behavioral management
    • showed to reduce social withdrawal
  • does PAMS increase quality of life?
  • will there be differences in informants (parents/family versus staff)
    • Schwartz and Rabinovitz - parents and close family members are usually more accurate
  • do behavioral issues impede access to opportunities and decrease quality of life?
• Administered the Abberant Behavior Checklist and the A French Life Satisfaction scale - both require informant assessment
• Method
  • PAMS 1 - created in 2000
  • PAMS 2 - 2002
  • Control group of individuals in Geneva
    • all attend workshops
• participants
  • 30 adults 24-62
    • 23 M, 7 F
    • all PDD according to the ICD-10
      • confirmed by clinical psychologist and independent evaluation
    • CARS also administered
      • 4 moderate
      • 19 severe
      • 7 profound
• Measures - French life satisfaction scale
  • Schalock (2005) - most important measure - calculations of the agreement between person and environment
    • has assistance and support been adapted?
    • expression of choice
    • individuality
    • self-determination
    • environment
    • health and security
    • social integration
    • leisure and rec
    • specific needs
    • staff training and supervisory control
  • rated on a 3-point scale
    • completed by a staff member and a family member (semi-structured interview format)
  • ABC used - 3 month intervals
  • CARS used
  • amount of psychotropic medication also looked at
• Intervention?
  • PAMS
    • each person has an IEP
    • workshops are made through TEACCH-like assessments
  • Random assignment impossible
  • Non-parametric tests were used due to heterogeneity
• Results
  • 2005 and 2006 - high rates of completion by staff
  • much less by family members
    • some have no family
    • some don't speak French
    • Some were not available
  • staff scores were higher than family scores
  • families weren't sure about staff training and supervision quuestions
  • no difference between the three groups in 05 or 06
  • interrater reliability - 70% overall?
  • small negative correlations are observed in staff's assessment between irritability, lethargy and hyperactivity and social integration and leisure and recreation
  • more significant negative correlations for family members
• differences in the medication received by PAMS and non-PAMS
• Discussion
  • overall quality of life is higher in Switzerland
  • families rate it lower than staff - decreased over time
    • is it accurate or overly enthusiastic in the beginning?
  • quite a bit of data are missing from families
  • this study stimulated discussion between families and staff and interaction
  • can be used to facilitate collaboration
  • do we need to modify PAMS for kids with more severe impairments as suggested by Sherer and Schriebman (2005)?
  • group design limited the data collected
  • power lower
  • strength - longitudinal study