Transcript 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
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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
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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?
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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
Qualitative inquiry (Poston et al 2003)
 Tool development and initial validation
(Park et al 2003)
 Tool refinement (Hoffman et al in press)
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CFA, model testing
Test – retest
Concurrent validity
Tool use
 Associated tool development
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Family Quality of Life Model
Family Quality of Life
DisabilityRelated
Support
Family
Interaction
Parenting
Emotional
Well-Being
Physical/
Material
Well-Being
Developing and Testing
The FQOL Model
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Developing the model (EFA)
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208 families in 7 states; mostly ages birth to 12
Confirming the model (CFA)
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280 families in 1 state; mostly ages birth to 5
Cronbach alphas for internal consistency
 Evaluate model fit (2, CFI, RMSEA)
 Continued model testing
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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
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
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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
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What We Are Learning From
Qualitative Studies
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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
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34% reported both positive and negative effects
30% negative effects
“Family members articulated that their
28% positive effects
FQOL is adversely affected in the
8 % not negative, but different 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 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?
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The Domains and Indicators
Domain mean scores
 Item mean scores
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Consistently lower scores
Having time to pursue interests
 Having support to relieve stress
 Having time to care for all family members
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Consistently higher scores
Showing love for each other
 Having adequate transportation
 Getting medical care when needed
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Differences Among Populations
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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
 Income
and Severity of Disability as
Predictors
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364 participants from 280 families of children
with mild to moderate disabilities ages birth to
5 in Kansas
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Income is positive predictor for mothers’
satisfaction but not for fathers’
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Severity is negative predictor for mothers’ and
fathers’ satisfaction
Predictors and Contributors
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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
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Predictors and Contributors
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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 WellBeing, Physical/Material Well-Being, and
Disability-Related Support
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Predictors and Contributors
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Positive behavioral support intervention (single
subject design) for child with life threatening
food refusal - introduce snack routine
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FQOL scores increase dramatically (old
version of scale)
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FI
P
H&S
3.7 to 4.7
2.9 to 3.9
3.4 to 4.6
FR
DRS
2.6 to 3.6
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 Contributors
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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
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Predictors and Contributors
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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
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No significant differences among demographic or
intervention groups
 Most significant impact on Emotional Well-Being
 Smallest impact on Physical/Material Well-Being
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Teaching the Application of
Family Quality of Life
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Doctoral level special education family seminar
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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
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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 . . .
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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?