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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 l.jpg

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]


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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

Disability-

Related

Support

Family

Interaction

Physical/

Material

Well-Being

Emotional

Well-Being

Parenting

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 Life

  • 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


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What We Are Learning From Quantitative Studies Life

  • 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 Life

  • 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 Life

  • 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 Life

  • 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 Life

  • 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 Life

  • 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 Life

  • 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


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Predictors and Contributors Life

  • 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 Life

  • 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 LifeFamily 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 . . . Life

  • 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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