Family Quality of Life: From Conceptualization to Theory

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Family Quality of Life From Conceptualization to
Theory

• Ann Turnbull turnbull_at_ku.eduNina Zuna
  nzuna_at_ku.edu
• Jean Ann Summers jsummers_at_ku.edu
• Kimberly Hu huxiaoyi_at_ku.edu
• International Society for Quality-of-Life Studies
• San Diego, CA
• December 7, 2007
• www.beachcenter.org

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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
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My school district gives my son the One Size Fits
All program. My son is barely making
progressROAD BLOCKMy husband and I tell
ourselves, we will go thru our private
insuranceOur 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
accountROAD BLOCK We applied for help with our
local Regional Center. There is a 3-year or more
wait listSo, we re-financed our home so we could
pay for extra therapies and early interventions
for him.
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When that wasnt 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
counselingThere are arguments and disagreements
about finances, school districts, employment
hours, long term goals for our son. Im never
home because Im fighting for my sonROAD
BLOCK...I want you to know that Autism is
affecting my family.
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Research Review Search

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

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Definitions of FQOL

• Only a few included an explicit definition
• Emphasis on subjective perception
• Definition implied by measures

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Brown, Brown, and Colleagues

• A meeting place of
• Individual family members quality of life
• Factors that affect the whole family

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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.

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Family Quality of Life Theoretical Framework
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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.

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Orientation of Domains/Factors

• Family-level
• Individual family-member
• Extra-familial

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Family-Level Orientation

• Conditions required to assure familys capacity
  to meet individual-member needs
• Family interaction communication, support among
  members
• Cohesion bonding, spending time together
• Decision-making authoritative, cooperative

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Individual Family-Member Needs

• Physical well-being
• Health
• Health care
• Sleep/fatigue

• Emotional well-being
• Emotional distress
• Support from others
• Love

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Extra-Familial Supports

• Extended family
• Neighborhood/community
• Peer relationships
• Professional services

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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

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Family Quality of Life Theoretical Framework
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Individual Factors
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Individual Factors

• Demographics age, gender
• Characteristics type of disability, behavior
• Beliefs and expectations goals, preferences

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Individual Factors

• 33 focused on one or more child characteristics
  as a predictor variable
• Childs age
• Type/severity of disability
• Presence of behavior problem

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• 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

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Family Factors
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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

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Family Factors

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

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• 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

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Family Quality of Life Theoretical Framework
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Individual Supports
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Family Supports
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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.

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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

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Family income predicts higher FQOL.
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Severity of disability and presence of behavior
problems predict lower FQOL
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When children and families receive comprehensive
positive behavior support services, the services
mediate the negative impact of child behavior
problems on FQOL.
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For all that has been, thanks for all that will
be, yes!
Dag HammarskjöldSecretary-General, United
Nations (1905-1961)