Lee, L., Harrington, R.A., Louie, B.B., and Newscheffer, C.J. (2008).  Children with autism: Quality of life and parental concerns. JADD. DOI on paper. 

• Quality of life - used to measure many domains
  • has more prominence
  • first cited as important by Schalock et al., 2002
• Characteristics of Quality of Life
  • multidimensional - influenced by the person and their environment
  • is the same for all people
  • subjective AND objective
  • influenced by
    • self-determination
    • resources
    • life purpose
    • belonging
• no consensus on measurement of Quality of Life - no common instrument
• few studies - small samples
  • higher stress in autism
  • more family strife
    • might be indicative of behavioral issues
    • reliance on strict routines might make it difficult to participate in outside activities (Fox 2002)
    • parents say others don't understand them
  • more of a family burden
  • more physical and psychological issue
  • more challenging behavior - more stress
    • associated with lower amounts of functional communication
  • financial challenges
    • work lost
    • medical care (Hecimovic and Gregory 2005; Parish 2004; Swensen 2003)
  • mixed effects on siblings
• kids with DD - difficulties in school, social, and adaptive functioning
• tend to be less independent
  • especially kids with autism
  • more likely to remain dependent than their peers (Balban-Gil, 1996; Howlin 2004; Seltzer 2004)
• lots of quality of life research on ADD and ADHD
  • little in autism
  • none comparing
• Present study - compares parental responses on questionnaire between children with ADD, Autism, and no disability
  • social activity
  • family burdens
  • family activities
  • school
  • independence
  • parental concerns
• Methods
  • 2003 national Survey of Children's Health
  • quality of life questions were asked of families with children age 3-17
  • done through random digit dialing
  • respondents
    • 78.5% mothers
    • 17.3% fathers
    • 4.2% others
  • groups
    • autism - asked if the child was ever Dx with autism - did not leave out comorbid Dx (could have had ADD)
    • ADD/ADHD - negative response on autism, but could have other disabilities
    • unaffected - did not have either disorder
  • not all questions were asked of all children - reports might be limited
  • Questions
    • caring burden (3-17)
      • harder to care for?
      • does things that bother the parent
      • giving up more of their life in caregiving
    • family outing (only asked of children age 3-5) in the past week
    • how ofteh children attend religious services
    • whether parents needed to quit a job for childcare - only asked of parents 3-5
    • days of missed school - only age 6-17
    • participation in afterschool or weekend activities (6-17)
    • repeated a grade (6-17)
    • independence (6-11) - even for small amounts of time
    • community service/volunteering (12-17)
    • parental concerns (6-17)
      • achievement
      • self-esteem
      • stress/coping
      • learning
      • bullying
• stats - regression analysis
• results
  • more males with autism and ADD
  • most likely white
  • burden - higher in the autism group
    • more likeley to repeat a grade
    • missed more school
    • participated in fewer activieis
  • parental concerns were higher in all domains
  • when broken down by age range:
    • Early childhood
      • higher caring burden
      • 70% less likely to attend religious services weekly
      • 7x more likely to leave a job b/c of childcare issues
    • age 6-11     
      • greater burden
      • significant - less likely to attend religious services regularly
      • more likely to miss school
      • lot of concern about
        • achievement
        • self-esteem
        • stress and coping
        • learning difficulties
        • being bullied
    • 12-17
      • still a burden
      • 50% less likely to attend religious services
      • more likely to miss school
      • less likeley to participate in activieis
        • parents - more concerns about learning and bullying
• Discussion
  • higher level of burden
  • less frequent religious service attendance
  • more likely to quit a job (3-5 only?)
  • school missed
  • repeated grades
  • less community involvement
    • could this be b/c it's more difficult to take a child with autism out of the home?
    • points to possible financial stress
  • concerned about child's well-being, especially learning and being bullied
  • limitations
    • self-report not verified
    • not a lot of quality of life questions
    • selection bias - who answers the phone?
    • parental psychopathology and own autism-related traits?
    • can't tell level of functioning
  • more expanded ideas of outcome are needed (Matson 2006; Wolery and Garfinkle 2002)
  • quality of life must be on the minds of practitioners and must be present to optimize interventions!