Family Quality of Life: From Conceptualization to Theory Ann Turnbull – turnbull@ku.edu Nina Zuna – nzuna@ku.edu Jean Ann Summers – jsummers@ku.edu Kimberly Hu – huxiaoyi@ku.edu International Society for Quality-of-Life Studies San Diego, CA December 7, 2007 www.beachcenter.org

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…

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.

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.

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

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

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

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.

Family Quality of Life Theoretical Framework

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.

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

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

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

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

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

Family Quality of Life Theoretical Framework

Individual Factors

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

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

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

Family Factors

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

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

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

Family Quality of Life Theoretical Framework

Individual Supports

Family Supports

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.

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

Family income predicts higher FQOL.

Severity of disability and presence of behavior problems predict lower FQOL

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

“For all that has been, thanks; for all that will be, yes!” Dag Hammarskjöld Secretary-General, United Nations (1905-1961)