Family Quality of Life

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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
• www.beachcenter.org
• denisep_at_ku.edu

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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

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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.

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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.

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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

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Family Quality of Life Model
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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

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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

• Advocacy affects family quality of life -
  families feel a need to advocate, but wish they
  didnt 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 familys 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
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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
• 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

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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

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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

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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

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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

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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
• HS 3.4 to 4.6
• FR 2.6 to 3.6
• DRS 2.4 to 3.8

Its imperative to do a FQOL measure with
families when implementing a home-based PBS
intervention. Joe Lucyshyn, University of
British Columbia, Canada
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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 childs positive contributions
  were predictive of FQOL
• Income, childs age, and parental depression were
  strongest predictors of FQOL
• Satisfaction with services were moderate
  predictors of FQOL

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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

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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
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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?