Family Quality of Life

What We Have Learned Five Years Into a New Field of Study

Presented at IASSID-EuropeMaastricht, The Netherlands

August, 2006

Denise Poston and Ann Turnbull with the contributions of many others

University of Kansas -- Beach Center on Disabilitywww.beachcenter.org

denisep@ku.edu

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

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?

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)

CFA, model testing Test – retest Concurrent validity

Tool useAssociated tool development

Family Quality of Life Model

Family Quality of Life

FamilyInteraction

ParentingPhysical/Material

Well-Being

Disability-RelatedSupport

EmotionalWell-Being

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 consistencyEvaluate 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

Use in descriptive studies Use as an outcome measure in program

evaluationUse 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

This is NOT a meta-analysisResearch conducted at The Beach

Center and other research centersQuantitative and qualitative dataTeaching and applicationsEach additional piece of data helps build

our theory of family quality of lifeBig Idea #1 – Family quality of life is a

measurable construct

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 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

Domain mean scoresItem mean scores

Consistently lower scoresHaving time to pursue interestsHaving support to relieve stressHaving time to care for all family members

Consistently higher scoresShowing love for each otherHaving adequate transportationGetting medical care when needed

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

Income and Severity of Disability as Predictors364 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 Contributors

Impact of partnership and services 180 parents of children in early intervention

programs in KansasAssessed satisfaction with services,

partnerships and family quality of lifeThe quality of partnerships with

professionals affects FQOLAdequacy of service affects FQOLPartnerships are a partial mediator between

services and FQOL

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 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 Contributors

Positive PerceptionsN = 175 families in of children ages 2-18 with

autism spectrum disorder in Illinois2 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

Impact of Deafness 207 primary caregivers of children ages 2-72

months in 39 states2 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-BeingSmallest impact on Physical/Material Well-Being

Predictors and Contributors

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 . . .

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?