Journal of Intellectual Disability Research
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© Blackwell Publishing Ltd
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Blackwell Science, LtdOxford, UKJIDRJournal of Intellectual Disability Research -Blackwell Science Ltd, Original ArticleFamily quality of lifeJ. Park et al.
Correspondence: Jiyeon Park PhD, Department of Special
Education, Ewha University, DaeHyun Dong -, Seoul, Korea
- (e-mail: jpark@ewha.ac.kr).
Toward assessing family outcomes of service delivery:
validation of a family quality of life survey
J. Park,
1
L. Hoffman,
2
J. Marquis,
2
A. P. Turnbull,
2
D. Poston,
2
H. Mannan,
2
M. Wang
2
&
L. L. Nelson
2
1 Department of Special Education, Ewha University, Seoul, Korea
2 Beach Center on Disability, University of Kansas, Lawrence, Kansas, USA
Abstract
Background The concept of family quality of life
(QoL) has emerged as an important outcome of ser-
vice delivery for individuals with disabilities and their
families. The present study describes the process of
developing a tool to measure family QoL.
Methods and Results A total of respondents
participated in a national field test. Through factor
analysis, the survey was refined in several ways: ()
the preliminary -domain structure was reduced to
a five-domain structure; () a total of items were
selected for the revised survey; and () wordings were
clarified.
Conclusions The implications for future research
and practice are discussed.
Keywords assessment, family outcomes, family
quality of life survey, service delivery, validation
Introduction
Defining outcomes intended for consumers and spec-
ifying the services to be provided in order to achieve
those outcomes is the foremost purpose of any service
delivery system (Bailey et al. ; Gardner & Nudler
). As agencies have come to serve families in
addition to children with disabilities, and as interven-
tion has come to embrace more than remedial efforts
on children’s deficits, the prime consumers have
come to include not only children with disabilities,
but also their families (Dunst et al. ; Allen & Petr
; Turnbull et al. ). Therefore, emerging
principles are that: () families’ priorities and deci-
sions should be respected; () services and supports
should be provided to assist families in achieving their
identified goals; and () service systems should be
designed to improve the capacity of children with
disabilities and their families to function in the natu-
ral environments of their communities (Duwa et al.
; Osher ).
As an outcome measure for services which meets
these principles, researchers have proposed the con-
cept of quality of life (QoL) (Murrell & Norris ;
Fewell & Vadasy ; Schalock et al. ; Turnbull
& Brunk ; Bailey et al. ; BCFD ; Scha-
lock ; Gardner ; Wehmeyer & Schalock
). Several authors have emphasized that the QoL
of individuals is related to that of those around them
and have asserted that efforts to address the individ-
ual’s QoL must also include consideration of the QoL