Family Quality of Life and
Application Among
People with Intellectual
Disabilities and Their Families
Professor Robert L. Schalock,
Ph.D.
Institute of Health & Welfare Policy
Yang Ming University
October 17, 2008
Rationale for Family Quality of Life Focus
 International focus on QOL for persons with
intellectual disabilities (ID)
 Increased responsibility expected of family members
in supporting and caring for their relations with ID; in
Taiwan, approximately 90% live with families)
 Need for family support
 More holistic approach to understanding the impact
of disability on the family and family members
 Historically, stress burden of care, effect on family
functioning, and/or eco-cultural deprivation/changed
routine
 Applying a QOL framework to families brings together a
wider range of aspects of family life to understand family
experiences and needed supports
Steps in the Development of a QOL
Conceptual and Measurement Framework
 Observing and describing the
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phenomenon (focus groups)
Performing concept mapping (indicators to
domains)
Validating the concept and measurement
framework (factor analysis)
Cross-cultural studies to determine etic
(universal) and etic (culture-bound)
properties
Structural equation modeling to determine
higher order construct
Individual-Referenced Quality of Life
Conceptual and Measurement Framework
Factor
Domain and Exemplary Indicators
Independence
Personal Development: personal skills, adaptive
behaviors
Self-Determination: choices, decisions, autonomy
Social
Participation
Interpersonal Relations: Friendships, social
networks
Social Inclusion: Community involvement, roles
Rights: Access, dignity, respect
Well-Being
Emotional: safety and security, positive
experiences, success
Physical: Health and nutrition status, recreation
Material: Income, possessions
Family Quality of Life Definition
 “Family quality of life is a dynamic sense
of well-being of the family, collectively and
subjectively defined and informed by its
members, in which individual and familylevel needs interact.” (Zuna et al., in press)
Family Quality of Life Domains
 Aznar and Castanon (2005)
 Emotional Well-Being
 Personal Strength & Development
 Interpersonal & Community Relations
Family Life
Cohabitation Rules
Physical/Material Well-Being
 Beach Center (Summers et al., 2005)
 Family Interaction
 Parenting
 Disability-Related Supports
Physical & Material Well-Being
Emotional Well-Being
 International Family QOL Project (Isaacs et al., 2007)
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Health & the Family
Family Relationships
Supports from Disability-Related Services
Careers & Preparing for Careers
Community Interaction
Financial Well-Being
Supports from Others
Influence of Values
Leisure & Recreation
Family QOL Domains and Exemplary Indicators
Domain
Exemplary Indicators
Disability-Related
Supports
Spending time together, talk openly to
one another, solves problems together,
supports one another
Parenting
Help the children to be independent, help with
school work, help the children to get along
together and with others
Emotional Well-Being
Has the support needed to relieve stress, have
friends who provide supports, have time to
pursue their own interests
Physical/Material W-B
Gets medical care when needed, have needed
transportation, has a way to take care of
expenses, feels safe in community
Family Interactions
Has support to make progress, school and/or
work, and at home, has support to make friends,
has a good relationship with service provider
(Source: Summers et al., 2005, p. 780)
Implications for Practice
 Policy Level
 Identify impacts of current policies or policy changes on family
QOL
 Comparison before and after policy changes are implemented
 Use domains and indicators to craft new policies designed
specifically to address respective domain
 Agency and Community Level
 Basis for decision making (e.g. targeted supports; additional
supports)
 Basis for staff training
 Basis for meeting accountability/reporting requirements
 Individual Level
 Identify priority areas
 Assist in communication
 Self evaluation (e.g. assess own opportunities, initiatives,
attainment, and satisfaction with their overall family quality of life)
References
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Aznar, A. S. & Castanon, D. G. (2005). Quality of life from the point of view of Latin
American families: A participative research study. Journal of Intellectual
Disability Research, 49 (10), 784-788.
Chou, Y.C. & Schalock, R. L. (2007). Trends in residential policies and services for
people with intellectual disabilities in Taiwan. Journal of Intellectual Disability
Research, 51 (2), 135-141.
Chou, Y.C., Schalock, R. L., Tzou, P. Y., Lin, L.C., Chang, A. L., Lee, W.P., & Chang,
S. C. (2007). Quality of life of adults with intellectual disabilities who live with
families in Taiwan. Journal of Intellectual Disability, 51 (11), 875-883.
Isaacs, B. J., Brown, I., Brown, R., Baum, N. et al. (2007). The International Family
Quality of Life Project: Goals and description of a survey tool. Journal of Policy
and Practice in Intellectual Disabilities, 4 (3), 177-185.
Schalock, R. L., Gardner, J.F., & Bradley, V. J. (2007). Quality of life for people with
intellectual and other developmental disabilities: Applications across individuals,
organizations, communities, and systems. Washington, DC: American
Association on Intellectual and Developmental Disabilities.
Summers, J.A., Poston, D.J., Turnbull, A. P. et al. (2005). Conceptualizing and
measuring family quality of life. Journal of Intellectual Disability Research, 49
(10), 777-783).
Zuna, N., Summers, J. A., Turnbull, A. P., Hu, X. et al. (in press). Theorizing about
family quality of life. In R. Kober (Ed.), Quality of life for people with
Intellectual disability. New York: Springer.