Chapter 2

Quality of Life Model Development and Use

in the Field of Intellectual Disability

Robert L. Schalock, Kenneth D. Keith, Miguel Á. Verdugo,

and Laura E. Gómez

Introduction and Overview

Models are helpful in understanding a phenomenon and identifying critical compo-

nents or factors involved in its application. In program development and evaluation,
for example, logic models provide a visual map or narrative description of how
specific program components are related to a program’s desired results. A logic
model has many uses, including presenting a program’s underlying assumptions,
rationale, or theory; explaining the connections between inputs and outcomes; iden-
tifying critical factors that affect variation in program outcomes; and providing a
systems approach to portraying the path toward a desired outcome. Logic model
construction is an important first step in program monitoring, performance manage-
ment, and evaluation (Frechtling, 2007; Kaplan & Garrett, 2005; Millar, Simeone,
& Carnevale, 2001).
As distinct from a logic model, an operational model depicts key concepts and
variables involved in understanding, operationalizing, and applying a phenomenon
or, in the case of the present chapter, the quality of life (QOL) construct. An oper-
ational model allows one to operationalize a construct in regard to its definition,
conceptual and measurement framework, components, and potential application.
Thus, the development and evaluation of an operational model is an important first
step in QOL assessment, application, and theory construction.
Although the model development and application work we describe in this
chapter is based primarily on the authors’ research on individual-referenced QOL
over the last two decades, details about analogous efforts can be found elsewhere.
Specifically, the interested reader can find similar model development and evalu-
ation efforts described for (a) individual-referenced QOL (e.g., Cummins, 1996,
2005; Felce & Perry, 1995, 1996, 1997; Petry, Maes, & Vlaskamp, 2005, 2007);
(b) family QOL (e.g., Summers et al., 2005; Chapter 15 by Zuna et al.); (c) health-
related QOL (e.g., Byrne-Davis, Bennett, & Wilcock, 2006; Rahtz, Sirgy, & Lee,

R.L. Schalock (B)

Hastings College, Hastings, NE, USA
e-mail: [email protected]

R. Kober (ed.), Enhancing the Quality of Life of People with Intellectual Disabilities, 17
Social Indicators Research Series 41, DOI 10.1007/978-90-481-9650-0_2,

C Springer Science+Business Media B.V. 2010
18 R.L. Schalock et al.

2004; Taillefer, Dupuis, Roberge, & LeMay, 2003); and (d) QOL of older peo-
ple (e.g., Bowling & Gabriel, 2004). Across these QOL model development and
evaluation efforts, one finds reference to the need to focus on the parameters of a
QOL model; understand better the relationship between domain-specific factors and
external variables; develop more sophisticated models, including a better definition
of the content and boundaries of the QOL concept; and validate the factor structure
and hierarchical nature of the QOL construct.
This chapter has four major sections. In the first, we describe how we have
approached the first step in model development: formulating and validating a QOL
conceptual and measurement framework. In the second section, we describe how
the model has been operationalized through its definition, components (concepts,
indicators, and moderator–mediator variables), and premises. In the third section,
we suggest a number of criteria that can be used to evaluate any empirically derived
model. In the final section, we reference how the model has been applied in four
areas important to the application of the QOL construct in the ID field. We do not
suggest that the QOL operational model presented in this chapter is the only way
to understand and apply the QOL construct; however, we hope it will provide an
example and catalyst for discussion and further QOL model development efforts.

Formulating and Validating a QOL Conceptual

and Measurement Framework

Model development involves combining sources of information including existing

definitions, literature, and logical reasoning (Shoemaker, Tankard, & Lasorsa, 2004;
Chapter 15 by Zuna et al.). In our case, the major source of information has come
from two decades of research that has resulted in (a) identifying core QOL domains
that have etic properties (Jenaro et al., 2005; Keith, Heal, & Schalock, 1996;
Schalock et al., 2005); (b) developing and evaluating of domain-referenced and cul-
turally sensitive QOL indicators used to assess QOL-related personal outcomes (van
Loon, van Hove, Schalock, & Claes, 2008; Verdugo, Arias, Gómez, & Schalock,
2008a; Verdugo, Arias, Gómez, & Schalock, 2009); and (c) identifying a number of
personal characteristics and environmental variables associated with QOL-related
personal outcomes (Keith, 2007; Schalock & Bonham, 2003; Schalock, Gardner,
& Bradley, 2007). Our approach to model development has included two steps that
reflect the seminal work of Carlisle and Christensen (2006), Fawcett (1999), and
Shoemaker et al. (2004): formulating the conceptual and measurement framework,
and validating the conceptual and measurement framework.

Formulating the Conceptual and Measurement Framework

Observation and description. The concept of QOL became a widely used notion
in national and international arenas during the 1960 and 1970s, and began to seri-
ously influence the field of ID in the 1980s. During these three decades, observation
2 Quality of Life Model Development and Use in the Field of Intellectual Disability 19

and description concerning the QOL concept generally fit into either a social
indicator/environmental perspective (e.g., Andrews & Whithey, 1976; Davis &
Fine-Davis, 1991; Parmenter & Donelly, 1997) or a personal well-being/individual
perspective (e.g., Brown, 1997; Cummins, 1997; Goode, 1990). Initially, this per-
spective incorporated personal values and satisfaction measures; gradually, however,
it became apparent that the QOL concept implies some combination of subjec-
tive and objective variables and therefore researchers considered more objective
indicators reflecting life events and circumstances (Cummins, 2000; Keith, 2001;
Schalock, 1999).
Concept mapping. Concept mapping is a type of structural conceptualization
that is useful for multiple purposes, including model development, theory construc-
tion, and program evaluation (Kane & Trochim, 2007; Rosas & Camphausen, 2007;
Sutherland & Katz, 2005). Beginning in the mid to late 1980s, researchers used
concept mapping to identify and define core QOL domains and their respective
indicators and to develop a conceptual framework based on core domains and indi-
cators. This work involved three activities: (a) generating ideas and listing potential
domains and indicators based on input from focus groups, personal interviews, and
published literature; (b) sorting the potential domains and indicators into groups
that made conceptual sense and reflected both the values and aspirations of indi-
viduals with disabilities and community QOL standards; and (c) defining each
domain operationally on the basis of measurable indicators (Cummins, 1997; Felce
& Perry, 1997; Gardner & Carran, 2005; Hughes & Hwang, 1996; Hughes, Hwang,
Kim, Eisenman, & Killian, 1995; Schalock & Keith, 1993; Schalock & Verdugo,
2002).
The net result of these activities for us was the development of the QOL con-
ceptual and measurement framework shown in Table 2.1. In reference to this
framework,

Table 2.1 Quality of life conceptual and measurement framework

Domain Literature-based indicators

Emotional well-being Contentment, self-concept, lack of stress

Interpersonal relations Interactions, relationships, supports
Material well-being Financial status, employment, housing
Personal development Education, personal competence, performance
Physical well-being Health and health care, activities of daily living, leisure
Self-determination Autonomy/personal control, goals and personal values, choices
Social inclusion Community integration and participation, community roles,
social supports
Rights Human (respect, dignity, equality) and legal (citizenship, access,
due process)

The indicators listed are a synthesis of the international QOL literature in education, special edu-
cation, intellectual disability/mental retardation, mental/behavioral health, and aging (Schalock &
Verdugo, 2002). The three indicators listed in each domain are the three most commonly cited
indicators across the five areas.
20 R.L. Schalock et al.

• QOL core domains represent the range over which the QOL concept extends and
thus define the multidimensionality of a life of quality.
• QOL indicators are QOL-related perceptions, behaviors, and conditions that
operationally define each QOL domain. Their measurement results in QOL-
related personal outcomes.
Concept mapping also allowed QOL investigators to develop assessment instru-
ments based on QOL domains and measurable indicators (see Cummins, 2004 for
a review). As this work has continued, and as researchers have refined assessment
instruments and strategies and made them more reliable and valid, they have laid a
foundation to validate the conceptual and measurement framework.

Validating the Conceptual and Measurement Framework

A number of studies have validated the QOL conceptual and measurement frame-
work shown in Table 2.1 by demonstrating the factor structure of the domains and
determining the etic (universal) and emic (culture-bound) properties of the domains
and indicators. Specifically, a series of cross-cultural studies (Jenaro et al., 2005;
Schalock et al., 2005) used the Cross-Cultural Survey of QOL Indicators (Verdugo
& Schalock, 2003) to survey three respondent groups (consumers, family/advocates,
and professionals) representing four geographical groupings (Europe, Central and
South America, North America, and Mainland China; 10 countries) on the impor-
tance and use (three-point Likert ratings) of the 24 core QOL indicators listed in
Table 2.1. The total sample across the studies was 2823 (approximately equal num-
bers in each respondent group). Results indicated that (a) the factor structure and
factor stability of the eight core QOL domains listed in Table 2.1 was confirmed;
(b) there were similar domain profiles on importance and use across respondent and
geographical groups, thus supporting the etic property of the QOL domains; and (c)
there were significant group and geographical differences on indicator items, thus
supporting the emic property of domain indicators.
Additional confirmation of the eight-domain factor structure shown in Table 2.1
is found in the recent work of Verdugo, Arias, Gómez, and Schalock (2008b, 2009,
in press) and Wang, Schalock, Verdugo, and Jenaro (2010). Table 2.2 summa-
rizes the results of this more recent causal modeling analysis that has evaluated

Table 2.2 Quality of life

factors and domains Factor Domains

Independence Personal development

Self-determination
Social participation Interpersonal relations
Social inclusion
Rights
Well-being Emotional well-being
Physical well-being
Material well-being
2 Quality of Life Model Development and Use in the Field of Intellectual Disability 21

via structural equation modeling the factor structure and hierarchical nature of
the conceptual model summarized in Table 2.1. Note that in Table 2.2 the eight
core domains listed in Table 2.1 are aggregated into three higher order factors:
independence, social participation, and well-being.
In summary, the development and validation of a QOL conceptual and mea-
surement framework is the first step in developing an operational QOL model.
As discussed above, this three-step process involved observation and description,
concept mapping, and validating the conceptual and measurement framework. The
net result is that we understand better the construct’s meaning and boundaries.
As the first step in model development, this process also establishes the founda-
tion for operationalizing the model’s parameters. We discuss three such parameters
next: an operational definition of individual-referenced quality of life, the model’s
components, and the model’s premises.

Operationalizing the QOL Model

As noted previously, we define an operational QOL model as a way to depict key

concepts and variables in understanding, operationalizing, and applying the QOL
construct. Here we discuss operationalizing the QOL model, including a definition,
model components, and model premises.

Definition of Individual-Referenced QOL

The grounded theory approach to model development derives directly from data,
rather than a priori assumptions or untested hypotheses (Donaldson & Gooler, 2003;
Taylor & Bogdan, 1998). This approach, which we used to develop the operational
definition of individual-referenced quality of life that follows, incorporates three
primary data sets: (a) identification and validation of core QOL domains that have
etic properties (Tables 2.1 and 2.2); (b) demonstration of the cultural sensitivity of
the QOL indicators used to assess each domain; and (c) identification of a num-
ber of personal and environmental variables that moderate or mediate QOL-related
personal outcomes. The QOL definition
Individual quality of life is a multidimensional phenomenon composed of core domains
influenced by personal characteristics and environmental factors. These core domains
are the same for all people, although they may vary individually in relative value and
importance. Assessment of QOL domains is based on culturally sensitive indicators.

Model Components
Three principal components allow operationalization of a model: (a) concepts that
provide a way to organize the phenomenon; (b) indicators that provide measures of
the phenomenon; and (c) variables that allow explanation of factors influencing the
22 R.L. Schalock et al.

Fig. 2.1 Quality of life operational model

phenomenon. In our work to date (Fig. 2.1), the operational model, including core
QOL domains (i.e., the concept), indicators (measures), and variables (moderators
and mediators), operates at the QOL domain level.
Concepts. The QOL conceptual and measurement framework presented in
Table 2.1 and the operational definition of individual-referenced QOL presented
above provide the conceptual basis for an operational QOL model: QOL is multi-
dimensional, is composed of eight core domains that are measured on the basis of
personal and culturally relevant indicators, and is influenced by personal and envi-
ronmental factors that act potentially as moderators or mediator. The importance of
this framework and operational definition is that the QOL operational model has
explanatory power and thus allows one to not only better understand essential char-
acteristics of the QOL construct, but also better understand the role of indicators,
moderator variables, and mediator variables.
Indicators. QOL indicators are quality of life-related perceptions, behaviors,
and conditions that define operationally each QOL domain. Their measurement
2 Quality of Life Model Development and Use in the Field of Intellectual Disability 23

results in personal outcomes. For consistency and standardization purposes, indica-

tors are selected on the basis of published research, expert panels, and stakeholder
focus groups. Criteria for selecting specific indicators are that those indicator items
selected: reflect what people want in their lives, are culturally sensitive, are related
to current and future policy issues, are those that the individual (or service provider)
has some control over, and can be used for quality improvement purposes (Verdugo,
Schalock, Gomez, & Arias, 2007; Verdugo, Schalock, Keith, & Stancliffe, 2005;
Walsh, Erickson, Bradley, Moseley, & Schalock, 2006).
Because there is a low correlation between subjective and objective assess-
ments of QOL indicators (Cummins, 1997; Schalock & Felce, 2004), most current
QOL assessment instruments use some combination of self-report (subjective) and
directly observable (objective) indictors/measures. Both approaches quantify the
respondent’s responses, generally using a 3- to 5-point Likert scale. Such scales
are easily understood and meaningful to the respondent. In the area of QOL assess-
ment with persons with ID, Likert-type scales capture a wide range of variance
in attitudes and behaviors and provide an efficient and reliable method for assess-
ing domain-referenced indicators in psychometrically sound ways (Bonham et al.,
2004; Hartley & MacLean, 2006).
The indicators used to assess a QOL domain will affect our understanding of
the domain. The following three examples from four different countries reflect the
emic nature of QOL indicators – even though the same criteria listed earlier were
used in their selection. Each of the three examples is referenced to the same domain:
Personal Development. In the first example, the six indicators used on the Ask Me!
Survey are (a) “does your job and what you do make you feel important; (b) are you
getting the training that will help you get a job or a better job; (c) do others give
you a chance to become what you want to be; (d) are you learning things that will
make you a better person; (e) do you get the information you need about sexuality;
and (f) do you get the services you need?” (Bonham, Basehart, & Marchand, 2005).
By comparison, the six indicators used in the Personal Outcomes Scale (van Loon
et al., 2008), developed in Belgium and The Netherlands, uses a 3-point Likert scale
to record self-report and direct observation assessments of activities and instrument
activities of daily living; the learning of skills or involvement in some type of edu-
cational program; opportunities to demonstrate skills; access to information (e.g.,
newspaper, TV); and use of a computer, cell phone, and/or calculator. In a similar
way, the Integral Scale (Verdugo et al., 2009), developed in Spain, uses a 4-point
Likert scale to record self-report and a yes–no scale to record direct observation
assessments of daily activities and involvement in educational programs and work
activities. These three examples show clearly that the indicators used to assess a
QOL domain will influence both our understanding of the domain and the meaning
of the resultant personal outcomes.
Moderator variables. Investigators working to operationalize models typically
use two classes of variables: moderators and mediators. A moderator variable is
a qualitative (e.g., gender or race) or quantitative (e.g., IQ or SES) variable that
alters the direction or strength of the relation between a predictor and an out-
come (Baron & Kenny, 1986). A moderator effect is an interaction in which the
24 R.L. Schalock et al.

effect of one variable depends on the level of the other (Frazier, Tix, & Barron,
2004; Hair, Black, Babin, Anderson, & Tatham, 2006). In reference to individual-
referenced QOL outcomes research, intellectual functioning, adaptive behavior
level, and level of self-determination are frequently considered moderator variables
(Felce & Emerson, 2001; Gardner & Carran, 2005; Lachapelle et al., 2005; Perry
& Felce, 2005; Schalock, Bonham, & Marchand, 2000; Stancliffe & Lakin, 1998;
Stancliffe, Abery, & Smith, 2000; Wehmeyer & Schwartz, 1998).
Mediator variables. A mediator variable influences the relation between an
independent variable and an outcome and exhibits indirect causation, connection,
or relation (Baron & Kenny, 1986). A mediating effect is created when a third
factor intervenes between the independent and outcome variable (Frazier et al.,
2004; Hair et al., 2006). In the field of ID, policies, practices, services, and sup-
ports can be thought of as mediator variables. Within the individual-referenced
QOL outcome research literature, residential setting, employment status, service
model, organization culture and operation, and community interactions are medi-
ator variables that affect the level of assessed personal outcomes (Bonham et al.,
2004; Gardner & Carran, 2005; Perry & Felce, 2005; Tossebro, 1995; Walsh et al.,
2006). An evolving literature (e.g., Cummins, 2005) suggests that at least one per-
sonal characteristic – subjective well-being homeostasis – may well serve as a
mediator.
The role that moderator and mediator variables play in QOL domains and per-
sonal outcomes is not completely clear at this time. For example, Neeley-Barnes,
Marcenko, and Weber (2008) reported recently that living in the community (repre-
senting a residential setting and thus a mediator variable) influenced three QOL
domains: community inclusion, rights, and interpersonal relations. Analogously,
particular aspects of a QOL domain may act as a mediator. For example, self-
determination (a core QOL domain that includes one or more indicators related
to choice, which one might consider a moderator variable) may also act as a medi-
ator that has a causal relation to QOL-related personal outcomes (Cummins, 2005).
Furthermore, in reference to logic models, mediators can act as intervening vari-
ables between inputs and outcomes (Chen, 2005; Frechtling, 2007). As research in
this area continues, it is important to keep in mind that understanding the role of
important moderators and mediators of personal outcomes indicates the maturity of
a discipline (Aguinis, Boik, & Pierce, 2001; Hoyle & Robinson, 2003) and is also
at the heart of model development and theory construction in social science (Cohen,
Cohen, West, & Aiken, 2003).

Model Premises

Published literature and logical reasoning influence a model’s premises. Table 2.3
summarizes the six premises that have guided this third phase of our work related
to operationalizing and applying the model. These six premises not only describe
key assumptions regarding the model’s development but also provide the basis for
evaluating and applying the model.
2 Quality of Life Model Development and Use in the Field of Intellectual Disability 25

Table 2.3 Model premises

1. The indicators used to assess a QOL domain will affect our understanding of the domain
2. Both self-report (subjective) and direct observation (objective) measures should be obtained,
because there is a low correlation between subjective and objective indicators/QOL measures
(Cummins, 1997; Schalock & Felce, 2004)
3. Objective indicators of life experiences and circumstances are better than subjective measures
to use for the purposes of model development and program evaluation (Cummins, 2005;
Schalock & Felce, 2004; Verdugo et al., 2005)
4. Moderators and mediators are defined in reference to personal characteristics and
environmental factors; can operate at any systems level (micro, meso, macro); represent a
potential dynamic relationship; and can be considered as intervening variables in logic
modeling that includes inputs, throughputs, outputs, and outcomes (Frazier et al., 2004;
Frechtling, 2007)
5. Each QOL domain can be a moderator or mediator of any other domain and these
inter-correlations are dynamic (Baron & Kenny, 1986)
6. QOL-related models are similar to a middle-range theory that consists of a limited number of
concepts and propositions that are generated and tested by means of empirical research. Thus,
the concepts and propositions of middle-range theories may be translated, just as with the use
of a model, into variables and testable hypotheses (Fawcett, 1999)

Criteria to Evaluate an Operational Model

As the field of ID encounters more models related to constructs such as quality

of life, we need to think about the criteria used to evaluate the utility and effect
of models, like the one described in this chapter. In an effort to stimulate thought
and discussion about relevant criteria for such models, we suggest the following
questions and criteria:

1. Is the model credible? That is, is it meaningful and does it describe the phe-
nomenon? Specific criteria would include (Hunter, 2006; Schalock & Luckasson,
2005) the following: the model is systematic (i.e., organized, sequential, logical),
formal (i.e., explicit and reasoned), and transparent (i.e., apparent and clearly
communicated).
2. Is the model accepted? The literature on diffusion of ideas and innovations (e.g.,
Rogers, 1995) has identified four key diffusion/acceptance processes: innova-
tion; communication channels; time to involve knowledge transfer, persuasion,
decision, implementation, and confirmation; and the system into which the infor-
mation/idea/model is to be infused. A related series of questions include whether
the model is plausible so that it can be followed and implemented and practical
and realistic in taking account of the organization and system’s capacities in rela-
tion to the environment (Hunter, 2006). Specific criteria include that the model
is referenced in academic journals, replicated in cross-cultural studies, and used
as a framework for public policy and services delivery practices.
3. Is the model testable? Criteria would include that the model generates hypothe-
ses (e.g., of the role that moderator and mediator variables play in personal
outcomes) and is modified on the basis of new information (Keith, 2001, 2007).
26 R.L. Schalock et al.

4. Does the use of the model change anything? Criteria would include that the
model explains how program inputs, processes, and external factors potentially
influence outcomes; identifies and prioritizes evaluation questions and helps
align evaluation methodology to answer those questions; expands our ability
to explain causality and predict results; helps to develop evidence-based prac-
tices; and facilitates capacity building for organizations and systems (Carlisle
& Christensen, 2006; Corley, 2007; Rogers & Bozeman, 2001; Veerman & van
Yperen, 2007).

Applying a QOL Operational Model

We have previously published application examples in four areas related to the oper-
ational QOL model presented in this chapter: (a) assessment of personal outcomes
(Bonham et al., 2004; Keith, 2007; Schalock, Bonham, & Verdugo, 2008; Schalock,
Verdugo, Bonham, Fantova, & van Loon, 2008; van Loon et al., 2008; Verdugo et al.,
2007, 2008a, 2008b, 2009); (b) as a basis for agency reporting and provider pro-
files (Keith & Bonham, 2005; Keith & Ferdinand, 2000; State of Nebraska, 2008);
(c) as a basis for quality improvement strategies (Bonham et al., 2005; Schalock,
Verdugo, et al., 2008); and (d) as a framework for desired policy outcomes (Shogren
et al., 2009) and individual support plans (van Loon, 2008). These applications
are occurring at the same time that the field is discussing and evaluating the util-
ity of logic models to both explain the connection between inputs and outcomes
and identify critical factors that affect variation in quality of life-related outcomes
(Isaacs, Clark, Correia, & Flannery, 2007; Schalock & Bonham, 2003; Schalock
et al., 2007).
Because of this convergence, it is important to understand clearly the relation-
ship between operational and logic models. Both have comparable developmental
phases (Gugiu, Rodriguez, & Campos, 2007), provide an integrative framework for
assessment and evaluation strategies (Cooksy, Gill, & Kelly, 2001), assume that
information without use is information without value (Corley, 2007), and can be
used as a planning and performance management tool (Kaplan & Garrett, 2005;
Millar et al., 2001). Their differences lie in their intended purpose or focus. A
logic model can present a program’s underlying rationale, theory, and assumptions,
including explaining connections between inputs and outcomes, identifying critical
factors affecting variation in program outcomes, and providing a systems approach
portraying the path toward a desired outcome. In distinction, an operational model
operationalizes a construct, including its definition, conceptual and measurement
framework, components, and potential application.
Logic and operational models intersect at the outcomes level of the logic model.
The viability and strength of a logic [program] model is heavily dependent on the
conceptual soundness and validity of the outcome variable(s) used, which under-
scores the critical need to develop QOL-related personal outcome measures based
on an operational model that is formulated and validated through processes such
2 Quality of Life Model Development and Use in the Field of Intellectual Disability 27

as those discussed in this chapter. As Stancliffe and Lakin (2005) and Isaacs
et al. (2007) have noted, the lack of a robust outcome measure (i.e., depen-
dent variable) has limited both the utility of logic models in the field of IDand
the generalizations that can be made about the relationship between inputs and
outcomes. Furthermore, in our view, an empirically derived and validated QOL-
related operational model provides the conceptual and measurement basis and
framework for QOL-related theory development and QOL-related evidence-based
practices.

Conclusion

Over the last three decades, we have seen significant conceptual and empirical
work clarifying the concept of quality of life. Specifically, we have moved from
a philosophical concept to a measurable construct, and from a measurable con-
struct to an operational model that is supported by considerable data and serves
as a basis for application and hypothesis testing. The operational QOL model pre-
sented in this chapter (a) defines QOL in terms of its empirically derived domains
and measurable indicators; (b) measures QOL-related outcomes on the basis of these
domain-referenced indicators; (c) operationalizes and assesses moderator and medi-
ator variables that potentially affect variation in QOL-related personal outcomes;
and (d) depicts how one or more of the model’s components can be used as a basis
for service delivery, program practices, and program evaluation.
Based on our experience to date, use of such a model has three implications and
potential impacts. First, there should be an increased confidence (by policy makers
and service delivery providers) that the QOL construct provides a valid framework
for service delivery policies and program practices. Second, an operational model
explains how program inputs, processes, and external factors act as moderator or
mediator variables that impact QOL domain-referenced personal outcomes. Third,
such a model provides an application and research framework for the emerging
trans-disciplinary approach to research and application that involves researchers
and practitioners working jointly in the production of both scientific understanding
and societal application effects.
Considerable work remains to be done to evaluate this and similar operational
models. This work will entail the continued exploration and identification of cultur-
ally sensitive domain-referenced indicators and the best way(s) to assess them, the
identification of significant QOL domain-referenced moderator and mediator vari-
ables, and the testing of hypotheses that are based on the model. These efforts reflect
the next phase in model development and theory construction in the fields of quality
of life and intellectual disability.
Acknowledgment The authors are appreciative of the inputs and suggestions given by these val-
ued colleagues at the University of Salamanca (Institute on Community Integration, School of
Psychology) in Spain (Benito Arias, Maria Gómez-Vela, Pedro Jimenez Navarro, Esther Navallas,
and Fabian Sainz) and Dr. Gordon Bonham (Bonham Research – Baltimore, MD).
28 R.L. Schalock et al.

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Chapter 3
Measuring Subjective Wellbeing: The Personal
Wellbeing Index – Intellectual Disability

Robert A. Cummins, Anna L.D. Lau, Gareth Davey, and Jane McGillivray

Introduction

The past few decades have seen an exponential growth in quality of life (QOL)
research. The results of these endeavors now form an increasingly coherent body
of literature that has generated widespread interest in the wellbeing of populations
and individuals. This interest is evident not just among researchers, but also in the
increasing use of QOL measures as outcome indicators, and as information upon
which to make policy decisions regarding the allocation of resources. However, all
such applications depend critically on an understanding of the QOL construct and
on the instruments used to make the necessary measurements.
Advancing a common understanding within this area has proved very challeng-
ing, not least because the field involves three disciplinary areas, and hence three
different orientations to QOL measurement. These are economics, which continues
to regard money as proxy for happiness (for a discussion see Ott, 2005); medicine,
which regards QOL as centered on health and employs a measured construct called
Health Related Quality of Life (for a critique see Cummins, Lau, & Stokes, 2004).
And then there are the social sciences within which QOL is seen as an over-
arching construct incorporating matters of money and health, but not restricted
to these variables. It is this latter tradition that forms the basis of the following
discussion.
Within the social sciences, QOL has been a topic of systematic study for over
30 years. The area was launched into scientific prominence by the publications of
Andrews and Withey (1976) and Campbell, Converse, and Rodgers (1976). Both
texts demonstrated the importance of clearly differentiating between the objective
and the subjective dimensions of QOL. This distinction has now become the cor-
nerstone of theory development but had to initially overcome the prejudice against
subjective measurement, as being inherently unreliable.

R.A. Cummins (B)

School of Psychology, Deakin University, Geelong, VIC, Australia
e-mail: [email protected]

R. Kober (ed.), Enhancing the Quality of Life of People with Intellectual Disabilities, 33
Social Indicators Research Series 41, DOI 10.1007/978-90-481-9650-0_3,

C Springer Science+Business Media B.V. 2010