1. Family Quality of Life: From Conceptualization to Theory
Ann Turnbull – Nina Zuna –
Jean Ann Summers –
Kimberly Hu –
International Society for Quality-of-Life Studies
San Diego, CA
December 7, 2007

2. Perspectives Related to Family Life and Autism
My name is Debra Shaumeyer and I am the mother of 6-year-old Austin Shaumeyer. When I found out Austin had Autism, I was given a sheet of resources to contact and was told to go see my Early Childhood Center, they can help me with my son. This road has been a nightmare. I went to my school district for help…

3. My school district gives my son the One Size Fits All program
My school district gives my son the One Size Fits All program. My son is barely making progress…ROAD BLOCK…My husband and I tell ourselves, we will go thru our private insurance…Our health insurance states it covers Speech and Occupational therapy for Autism. I filed claim after claim and appeal after appeal. There was nothing resolved except my empty bank account…ROAD BLOCK… We applied for help with our local Regional Center. There is a 3-year or more wait list…So, we re-financed our home so we could pay for extra therapies and early interventions for him.

4. When that wasn’t enough, we turn to our credit cards to help pickup the slack. ROAD BLOCK. Please understand and listen when I tell you how stressful and hurtful Autism can affect a marriage. There is nowhere to go for counseling…There are arguments and disagreements about finances, school districts, employment hours, long term goals for our son. I’m never home because I’m fighting for my son…ROAD BLOCK...I want you to know that Autism is affecting my family.

5. Research Review Search
Key words
Family quality of life
Quality of family life
21 databases
Final selection resulted in 25 articles

6. Definitions of FQOL Only a few included an explicit definition
Emphasis on subjective perception
Definition implied by measures

7. Brown, Brown, and Colleagues
A meeting place of:
Individual family members’ quality of life
Factors that affect the whole family

8. Beach Center Definition
All family members’ needs are met, and family members have opportunities to pursue and achieve goals that are meaningful to them.
Family members enjoy their life together as a family.

9. Family Quality of Life Theoretical Framework

10. Theorizing About Family Quality of Life
Individual and family factors interact with each other and with individual and family supports to produce FQOL outcomes.
This FQOL outcome leads to changes in individual and family factors which, in turn, require changes in individual and family support systems to produce a new level of FQOL.

11. Orientation of Domains/Factors
Family-level
Individual family-member
Extra-familial

12. Family-Level Orientation
Conditions required to assure family’s capacity to meet individual-member needs
Family interaction – communication, support among members
Cohesion – bonding, spending time together
Decision-making – authoritative, cooperative

13. Individual Family-Member Needs
Physical well-being
Health
Health care
Sleep/fatigue
Emotional well-being
Emotional distress
Support from others
Love

14. Extra-Familial Supports
Extended family
Neighborhood/community
Peer relationships
Professional services

15. Analysis of 4 Tools All include all 3 orientations
Need to separate supports from outcomes
Emphasis is on subjective rating of satisfaction
Need more objective ratings
Same domain names have quite different indicators – for example, emotional well-being
Need to work toward consensus

16. Family Quality of Life Theoretical Framework

17. Individual Factors

18. Individual Factors Demographics – age, gender
Characteristics – type of disability, behavior
Beliefs and expectations – goals, preferences

19. Individual Factors
33% focused on one or more child characteristics as a predictor variable
Child’s age
Type/severity of disability
Presence of behavior problem

20. Severity of disability and presence of behavior problems tended to negatively relate to FQOL
Families of typically developing children tended to have higher FQOL than families of children with disabilities

21. Family Factors

22. Family Factors Demographics – income, ethnicity, family structure
Individual-member characteristics – stress, coping styles, and beliefs/expectations
Family-unit characteristics – cohesion, problem-solving, extent of agreement on beliefs/expectations

23. Family Factors
42% included one or more family characteristics as predictor or mediating variable
Family income
Family size
Marital status
Parental employment
Race/ethnicity

24. FQOL usually lower in families with low income and from backgrounds other than European American
FQOL lower in step-families
17% included a measure of stress, depression, or negative well-being
Higher levels of depression/stress have a negative relationship with FQOL

25. Family Quality of Life Theoretical Framework

26. Individual Supports

27. Family Supports

28. Individual and Family Supports
Approximately one-third included a variable related to services and supports
Evenly split between service focus on children and children/families
No support interventions were focused entirely on families
All of these studies reported positive associations between supports and FQOL.

29. Satisfaction with Supports
Based on data from I. Brown et al. (2006) and R. Brown et al. (2006):
Satisfaction with family relations is highest or next-to-highest
Satisfaction with support from others and from disability services is lowest or one of lowest domains
Far more research focuses on family characteristics as contrasted to quality of individual and family supports

30. Family income predicts higher FQOL.

31. Severity of disability and presence of behavior problems predict lower FQOL

32. When children and families receive comprehensive positive behavior support services, the services mediate the negative impact of child behavior problems on FQOL.

34. “For all that has been, thanks; for all that will be, yes!”
Dag Hammarskjöld Secretary-General, United Nations ( )