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Family Quality of Life. What We Have Learned Five Years Into a New Field of Study Presented at IASSID-Europe Maastricht, The Netherlands August, 2006 Denise Poston and Ann Turnbull with the contributions of many others University of Kansas -- Beach Center on Disability

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family quality of life

Family Quality of Life

What We Have Learned Five Years

Into a New Field of Study

Presented at IASSID-Europe

Maastricht, The Netherlands

August, 2006

Denise Poston and Ann Turnbull

with the contributions of many others

University of Kansas -- Beach Center on Disability

www.beachcenter.org

[email protected]

thanks to partners and colleagues
Thanks to Partners and Colleagues
  • Families of children with disabilities
  • Rud Turnbull
  • Jean Ann Summers, Nina Zuna, George Gotto
  • Janet Marquis, Lesa Hoffman, Kandace Fleming
  • Mian Wang and Hasheem Mannan
  • Jiyeon Park and Loui Lord Nelson
  • The IASSID QOL SIRG
  • Carla Jackson and Mojdeh Bayat
  • Joe Lucyshyn and Beth DeGrace
  • Beach Center office staff throughout the years
big ideas to take away
Big Ideas to Take Away
  • Family quality of life is a measurable construct.
  • The Beach Center Family Quality of Life Scale was developed using a rigorous process. Refinement continues.
  • The FQOL scale can and has been used for different purposes. How might you use it in your research and practice?
  • Research using the FQOL scale has added to our knowledge of family quality of life.
why study family quality of life
Why Study Family Quality of Life?
  • Previous family outcome measures focused on dysfunction or were narrow in scope.
  • Family quality of life is global, positive, and universal.
  • Supports and services for children with ID and their families should enhance family quality of life.
  • Programs are accountable for family as well as child outcomes.
big idea 2 rigorous development of the beach center fqol scale
Big Idea #2 – Rigorous Development of the Beach Center FQOL Scale
  • Qualitative inquiry (Poston et al 2003)
  • Tool development and initial validation (Park et al 2003)
  • Tool refinement (Hoffman et al in press)
    • CFA, model testing
    • Test – retest
    • Concurrent validity
  • Tool use
  • Associated tool development
family quality of life model

Family Quality of Life

Disability-

Related

Support

Family

Interaction

Physical/

Material

Well-Being

Emotional

Well-Being

Parenting

Family Quality of Life Model
developing and testing the fqol model
Developing and TestingThe FQOL Model
  • Developing the model (EFA)
    • 208 families in 7 states; mostly ages birth to 12
  • Confirming the model (CFA)
    • 280 families in 1 state; mostly ages birth to 5
  • Cronbach alphas for internal consistency
  • Evaluate model fit (2, CFI,RMSEA)
  • Continued model testing
    • 120 families of children with autism
    • 385 families in Columbia (older model)
    • 107 couples (mothers and fathers)
    • 566 families of typically developing children
big idea 3 possible uses for the beach center fqol scale
Big Idea #3 - Possible Uses for The Beach Center FQOL Scale
  • Use in descriptive studies
  • Use as an outcome measure in program evaluation
  • Use as a dependent variable in experimental design studies (changes after an intervention)
  • Use as a needs assessment
  • Use for planning family support
big idea 4 what we are learning about family quality of life
Big Idea #4 - What We Are Learning About Family Quality of Life
  • This is NOT a meta-analysis
  • Research conducted at The Beach Center and other research centers
  • Quantitative and qualitative data
  • Teaching and applications
  • Each additional piece of data helps build our theory of family quality of life
  • Big Idea #1 – Family quality of life is a measurable construct
what we are learning from qualitative studies
What We Are Learning From Qualitative Studies
  • Advocacy affects family quality of life - families feel a need to advocate, but wish they didn’t have to alone
  • Spirituality affects family quality of life - provides meaning and source of support
  • “Although ratings of satisfaction were high, it cannot be inferred that all the family’s needs have been adequately met” Carla Jackson (2005)
  • The effects of autism on the family
    • 34% reported both positive and negative effects
    • 30% negative effects
    • 28% positive effects
    • 8 % not negative, but different

“Family members articulated that their FQOL is adversely affected in the areas of parenting, family interaction,

and meeting its daily functions and goals as a result of dealing with stressors of autism”.

Mojdeh Bayat, DePaul University

what we are learning from quantitative studies
What We Are Learning From Quantitative Studies
  • What we are learning about domains and Indicators?
  • What are the similarities and differences among different populations?
  • What are demographic and other predictors of family quality of life?
  • What contributes to family quality of life?
the domains and indicators
The Domains and Indicators
  • Domain mean scores
  • Item mean scores
    • Consistently lower scores
      • Having time to pursue interests
      • Having support to relieve stress
      • Having time to care for all family members
    • Consistently higher scores
      • Showing love for each other
      • Having adequate transportation
      • Getting medical care when needed
differences among populations
Differences Among Populations
  • Families of typically developing children (age 4-5) rate their satisfaction higher on all items
  • Families of children with deafness respond more like families of typically developing children than families of children with ID or DD
  • Families with lower incomes rate their satisfaction lower
  • Families in Kansas seem to rate their satisfaction higher
predictors and contributors
Predictors and Contributors
  • Income and Severity of Disability as Predictors
    • 364 participants from 280 families of children with mild to moderate disabilities ages birth to 5 in Kansas
    • Income is positive predictor for mothers’ satisfaction but not for fathers’
    • Severity is negative predictor for mothers’ and fathers’ satisfaction
predictors and contributors15
Predictors and Contributors
  • Impact of partnership and services
    • 180 parents of children in early intervention programs in Kansas
    • Assessed satisfaction with services, partnerships and family quality of life
    • The quality of partnerships with professionals affects FQOL
    • Adequacy of service affects FQOL
    • Partnerships are a partial mediator between services and FQOL
predictors and contributors16
Predictors and Contributors
  • Relationship Between Community Participation and FQOL
    • 332 families of children with developmental and other disabilities ages birth through young adulthood in 8 states
    • Families who experience fewer challenges participating in the community report higher quality of life
    • Challenges with participation are most significantly related to Emotional Well-Being, Physical/Material Well-Being, and Disability-Related Support
predictors and contributors17
Predictors and Contributors
  • Positive behavioral support intervention (single subject design) for child with life threatening food refusal - introduce snack routine
  • FQOL scores increase dramatically (old version of scale)
    • FI 3.7 to 4.7
    • P 2.9 to 3.9
    • H&S 3.4 to 4.6
    • FR 2.6 to 3.6
    • DRS 2.4 to 3.8

“It’s imperative to do a FQOL measure with families when implementing a home-based PBS intervention.”

Joe Lucyshyn, University of British Columbia, Canada

predictors and contributors18
Predictors and Contributors
  • Positive Perceptions
    • N = 175 families in of children ages 2-18 with autism spectrum disorder in Illinois
    • 2 components of perceptions = positive contributions of the child to the family and causes of the disability
    • Perceptions of the child’s positive contributions were predictive of FQOL
    • Income, child’s age, and parental depression were strongest predictors of FQOL
    • Satisfaction with services were moderate predictors of FQOL
predictors and contributors19
Predictors and Contributors
  • Impact of Deafness
    • 207 primary caregivers of children ages 2-72 months in 39 states
    • 2 uses of FQOL scale – satisfaction and impact - “to what extent has deafness affected this area of your family life”
    • Differences between groups and impact of deafness
      • No significant differences among demographic or intervention groups
      • Most significant impact on Emotional Well-Being
      • Smallest impact on Physical/Material Well-Being
teaching the application of family quality of life
Teaching the Application of Family Quality of Life
  • Doctoral level special education family seminar
    • Website with success stories and tips for practitioners related to enhancing partnership and family quality of life in early intervention
  • Masters level occupational therapy on-line course
    • Use FQOL survey to interview families and to think about ways to support families

“The information gathered gave me insights to this family that I have never known before, even after four years of working together”.

Student in on-line family course

what we still need to learn
What We Still Need to Learn . . .
  • High satisfaction scores can give policy makers a false impression that all is well. Is there is a better response format than satisfaction?
  • How do we best collect and analyze data from multiple family members? Do we need to?
  • How does the FQOL scale work for families of adults living at home?
  • How does the FQOL scale work in cross-cultural, cross-language, and cross-country applications?
  • Does the Beach Center FQOL Scale correlate with the FQOL Survey (Brown et al)?
  • Which items are most predictive of overall FQOL?
  • What are the “pivotal” or “cusp” interventions that will most affect family quality of life?
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