Family Quality of Life

1. 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

2. 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

3. 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.

4. 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.

5. 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

6. Family Quality of Life Disability- Related Support Family Interaction Physical/ Material Well-Being Emotional Well-Being Parenting Family Quality of Life Model

7. 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

8. 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

9. 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

10. 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

11. 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?

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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 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

19. 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

20. 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

21. 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?