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@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

use
Associated tool development

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
Developing

208 families in 7 states; mostly ages birth to 12

Confirming

the model (EFA)

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
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
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

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
Family members articulated that their
FQOL is adversely affected in the
28% positive effects
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?

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
Showing

higher scores

love for each other

Having adequate transportation
Getting 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

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 Contributors

Impact
180

of partnership and services

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 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 WellBeing, 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

2.9 to 3.9

H&S

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

Predictors and Contributors

Positive
N

Perceptions

= 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

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
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?