Stigma and Intellectual Disability A Review of Related Measures and

Research in Developmental Disabilities 33 (2012) 748765
Contents lists available at SciVerse ScienceDirect
Research in Developmental Disabilities
Review article
Stigma and intellectual disability: A review of related measures and

future directions
Shirli Werner a,*, Patrick Corrigan b,1, Nicole Ditchman b,2, Kristin Sokol b,3
a
b
The Paul Baerwald School of Social Work and Social Welfare Hebrew University of Jerusalem Mount Scopus, Jerusalem 91905, Israel
College of Psychology, Illinois Institute of Technology Chicago, IL 60616, USA
A R T I C L E I N F O
A B S T R A C T
Article history:
Received 29 September 2011
Received in revised form 7 October 2011
Accepted 7 October 2011
Available online 23 November 2011
The theoretical construct of stigma has received much attention in psychiatric disability
research, leading to the development of widely used measures. Such measures have had
real world impact in that they allow for the assessment of stigma change efforts. The study
of stigma has not received the same level of attention for persons with intellectual
disabilities. In this manuscript we evaluate existing measures of intellectual disability
stigma through a systematic review of the literature. Twenty-four scales were reviewed
and evaluated. Findings indicate a paucity of stigma measures based on theoretical
conceptualizations pointing to a need for further development of measures to pursue the
study of public, self, and family stigma as related to intellectual disability.
2011 Elsevier Ltd. All rights reserved.
Keywords:
Intellectual disability
Stigma
Scale
Systematic review
Measurement
Contents
1.
2.
3.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1.1.
Impact of stigma on individuals with intellectual disabilities . . .
1.2.
Impact of stigma on family members of individuals with ID. . . .
1.3.
1.4.
Stigma scales . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Material and methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Search strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
2.1.
2.2.
Inclusion criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Scale evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
2.3.
2.3.1.
Reliability and validity . . . . . . . . . . . . . . . . . . . . . . . . . .
Multidimensionality . . . . . . . . . . . . . . . . . . . . . . . . . . . .
2.3.2.
2.3.3.
Feasibility and appropriateness of the scale. . . . . . . . . .
Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
3.1.
Public attitude scales . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Reliability and validity . . . . . . . . . . . . . . . . . . . . . . . . . .
3.1.1.
Multidimensionality . . . . . . . . . . . . . . . . . . . . . . . . . . . .
3.1.2.
Feasibility and appropriateness of public stigma scales
3.1.3.
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* Corresponding author. Tel.: +972 2 5881377; fax: +972 2 5883927.

E-mail addresses: [email protected] (S. Werner), [email protected] (P. Corrigan), [email protected] (N. Ditchman), [email protected] (K. Sokol).
1
Tel.: +1 312 567 6751; fax: +1 312 567 6753.
2
Tel: +1 312 567 3511; fax: +1 312 567 3493.
3
Tel.: +1 312 567 5246; fax: +1 312 567 6753.
0891-4222/$ see front matter 2011 Elsevier Ltd. All rights reserved.
doi:10.1016/j.ridd.2011.10.009
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S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765
3.2.
4.
5.
Self-stigma scales . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Reliability and validity . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
3.2.1.
3.2.2.
Multidimensionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Feasibility and appropriateness . . . . . . . . . . . . . . . . . . . . . .
3.2.3.
Family stigma scales . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
3.3.
Reliability and validity . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
3.3.1.
Multidimensionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
3.3.2.
Feasibility and appropriateness . . . . . . . . . . . . . . . . . . . . . .
3.3.3.
Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Theoretical limitations of existing scales . . . . . . . . . . . . . . . . . . . . . .
4.1.
Methodological limitations of existing scales . . . . . . . . . . . . . . . . . . .
4.2.
Why has stigma conceptualization been rarely used in the ID eld?
4.3.
Applying stigma conceptualization to the ID eld . . . . . . . . . . . . . . .
4.4.
Limitations and future directions . . . . . . . . . . . . . . . . . . . . . . . . . . . .
4.5.
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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1. Introduction
The World Health Organizations (WHO) International Classication of Functioning, Disability, and Health (ICF) has
recognized that societal attitudes toward individuals with disabilities can negatively impact full participation in community
life (WHO, 2001). While stigma has been widely studied in the eld of psychiatric disability, leading to fairly well-developed
theoretical and methodological frameworks, the same level of attention and rigorous investigation has not been found in the
intellectual disabilities (ID) eld. Although people with ID differ from those with mental illness (MI), it is clear that
individuals with ID also constitute a stigmatized group who face many barriers to employment, housing, and community
participation. In an effort to advance understanding of stigma and ID, we aimed to carefully review and summarize existing
knowledge and identify key characteristics of research, which will guide future directions and efforts. Specically, this
review aims to systematically obtain and evaluate existing measures of ID stigma.
1.1. Stigma
One of the earliest denitions of stigma was offered by Goffman (1963) who described it as an attribute that is deeply
discrediting reducing the bearer from a whole and usual person to a tainted, discounted one (p. 3). Several theorists and
researchers have further conceptualized stigma and its dimensions. Social psychologists have dened stigma as comprised of
cognitive, emotional, and behavioral aspects known as stereotypes, prejudice, and discrimination. The negative attitudes and
stereotypes about a discredited subgroup lead to prejudice and discrimination toward such subgroups (Corrigan, 2000;
Corrigan & Watson, 2002). One way to approach understanding stigma is to see it as negative attitudes. Attitudes are
evaluative statements toward a person, object, or event. Attitudes are composed of affective, cognitive, and behavioral
components (Chan, Livneh, Pruett, Wang, & Zheng, 2009). Attitudes are a combination of seemingly factual statements and
an emotional reaction or value component. Attitudes can be either negative or positive; however, stigma is comprised
explicitly of negative attitudes (Corrigan & Lundin, 2001). Stereotypes are knowledge structures, or collective opinions,
known to most members of a social group (Hilton & von Hippel, 1996; Krueger, 1996). They are attitudes about a larger group
of people (i.e., people with MI), and like attitudes, can be either positive or negative (Corrigan & Lundin, 2001). Stereotypes
are helpful because they allow individuals to generate more efcient impressions and expectations of others that belong to
the stereotyped group (Hamilton & Sherman, 1994). Prejudice involves an evaluative component and includes a negative
emotional response toward the stereotyped group (Eagly & Chaiken, 1993). The cognitive and affective response of prejudice
leads to the behavioral reaction of discrimination (Crocker, Major, & Steele, 1998), including avoidant behavior, increased
social distance (Corrigan, 2002), hostile behavior (Weiner, 1995) and withholding help (Corrigan, 2000). Thus, stigma is seen
as a behavioral chain that starts from the stigmatizing mark, progresses through the attitude structures and results in
discrimination (Lam, Tsang, Chan, & Corrigan, 2006). Although important, attitudes fall short of addressing all of the
components that are encompassed by the stigma construct. Attitudes might best be conceptualized as a piece of the pie when
it comes to understanding how individuals with ID experience discrimination.
Some of the common stereotypes about persons with MI include beliefs that they are dangerous and responsible for
causing their illness (Link, Monahan, Stueve, & Cullen, 1999; Pescosolido, Monhan, Link, Stueve, & Kikuzawa, 1999).
Prejudice occurs when individuals endorse these negative attitudes (e.g., thats right; all persons with MI are violent) and
consequently generate negative emotional reactions (e.g., they all scare me). Finally, discrimination related to MI may
include coercion, segregation, hostile behaviors, and withholding help (Corrigan, Markowitz, Watson, Rowan, & Kubiak,
2003), resulting in limited work and housing opportunities (Rusch, Angermeyer, & Corrigan, 2005).
The eld of psychiatric disability has also differentiated between several types of stigma. First, public stigma is the most
well known type of stigma and focuses on the attitudes of the general population toward stigmatized persons (Link,
750
Struening, Rahav, Phelan, & Nuttbrock, 1997; Phelan, Bromet, & Link, 1998). A second type of stigma, self-stigma, focuses on
the experiences of stigmatized individuals themselves and the potential for internalization of societys negative views.
Targeted individuals may develop poor self-esteem, experience heightened negative emotions, and behaviorally withdraw
and conceal their stigmatized status from others (Corrigan & Watson, 2002).
Corrigan (2008) has dened self-stigma as consisting of four constructs: (1) awareness relates to people knowing common
stereotypes about others with a MI; (2) agreement occurs when a an individual supports the stereotypes as factual and accurate;
(3) application comes about when individuals internalize the stereotypes, applying them to themselves; and nally, (4) hurts
relate to the decreased self-esteem or self-efcacy that may result from internalizing stereotypes. It is important to note that
while harmful effects of stigma have been well documented, individual reactions to stigma vary, ranging from signicant loss in
self-esteem to righteous anger, and there are even some individuals who experience neither (Corrigan & Watson, 2002).
Finally, the third type of stigma is that experienced by persons surrounding the individual, including family members and
professionals. Family stigma is a specic case of stigma by association and is dened as the stigma experienced by individuals
as a consequence of being associated with a relative with a stigmatic mark (Larson & Corrigan, 2008). While the broader topic
of family burden has received attention in both the MI and ID literature, family stigma is just beginning to receive attention in
the ID eld.
Although substantial differences exist between individuals with MI and individuals with ID, some key similarities suggest
we may approach examining stigma for both groups in a similar fashion. First, both disability groups experience
discrimination, which limits their ability to achieve life goals. There are differences in the extent to which specic disabilities
are stigmatized, referred to as the hierarchy of preference toward disability. Within this hierarchy people with mental
disabilities (including MI and ID) are consistently the most highly stigmatized groups (Hernandez, Keys, & Balcazar, 2000;
Thomas, 2000; Yuker, 1988).
Some of the commonly held stereotypes about individuals with ID are highlighted in various studies. For example, in
qualitative interviews with 31 nurses, Slevin and Sines (1996) reported people with ID being perceived as aggressive. Within
qualitative interviews, individuals with ID reported that others perceive them as lacking the potential for change (Jahoda &
Markova, 2004). Further, in a multinational study, individuals in the general public have reported low expectations of the
abilities of individuals with ID (Siperstein, Norins, Corbin, & Shriver, 2003). Similarly, school children have perceived children
with ID as more severely impaired and less academically and socially able than they actually are (Siperstein & Bak, 1980).
Further, research has shown that the social identities of individuals with ID can be devalued and depersonalized into
stereotypic caricatures, which may negatively impact individuals with ID and their families (Crocker et al., 1998).
1.2. Impact of stigma on individuals with intellectual disabilities
Public stigma toward individuals with ID can take several forms. Individuals with ID may be exposed to teasing and stares,
and may be avoided by others (Pratt, 2010). Discrimination toward individuals with ID is evidenced through the lack of
decent services and discriminatory treatment within hospitals, such as the humiliation of public bathing, lack of privacy, and
an overly restrictive environment (Jahoda & Markova, 2004). Also illustrating the discrimination faced by individuals with ID
is the use of segregated day services and workshops instead of community-based services (Siperstein, Parker, Noris, &
Widaman, 2011), and the limited number of employment and choice making opportunities made available to individuals
with ID (Wehmeyer & Bolding, 1999). Stigma has been cited as one of the potential barriers to the delivery of adequate
services to this population (Gill, Kroese, & Rose, 2002), resulting in poorer treatment, rejection, and devalued roles within
society (Corrigan et al., 2003). Moreover, discriminatory behaviors lead to the lack of inclusion and social acceptance of
persons with ID within local communities as well as broader society (Jahoda & Markova, 2004).
Many individuals with moderate to mild ID are indeed aware of the stigma associated with their disability (Jahoda,
Wilson, Stalker, & Cairney, 2010). These individuals experience the stigma of their social identity through their interactions
with others, and this experience is often an emotionally painful one (Beart, Hardy, & Buchan, 2005). Some individuals may
even attempt to hide their disability as a way of avoiding stigmatization (Jahoda & Markova, 2004). Very few studies (beyond
Jahoda & Markova, 2004; Jahoda et al., 2010) have been conducted to examine self-stigma among individuals with ID and
most instruments are not suitable to examine stigma among individuals with more severe ID or with limited verbal skills
(Ali, Strydom, Hassiotis, Williams, & King, 2008). Further, regardless of level of awareness, individuals may nevertheless still
be prone to negative stigmatic treatment and its consequences (Cooney, Jahoda, Gumley, & Knott, 2006). We aim to identify
the instruments used in this eld to assess self-stigma in order to assess the need for further development in this area.
1.3. Impact of stigma on family members of individuals with ID
Most studies conducted looking at family stigma and ID have been qualitative in nature. Based on focus groups and indepth interviews, family members and caregivers reported their experiences of stigma based on their association with the
stigmatized individual (Cooney et al., 2006; Dagnan & Waring, 2004; Edwardraj, Mumtaj, Prasad, Kuruvilla, & Jacob, 2010;
Jahoda & Markova, 2004; Perkins, Holburn, Deaux, Flory, & Vietze, 2002). Other studies have found an association between
experiences of stigma and experiences of distress among parents of individuals with ID (Baxter, 1989; Mak & Cheung, 2008;
Shin & Nhan, 2009). A recent study looked at stigmatization of aging female family caregivers of adults with ID and adults
with MI and found similar levels of stigma reported by both groups (Chou, Pu, Lee, Lin, & Kroger, 2009).
751
Given the impact of stigma on the lives of individuals with ID and their families it is clear that there is a need to advance
this body of knowledge and to develop focused interventions to reduce stigmas negative impact. The development of valid,
reliable and theoretically driven scales is a rst step in understanding how the public reacts to individuals with disabilities as
well as how people with disabilities and their families react to stigma in their environment. Such measures must be
appropriate and suitable for the specic research population. These measures also provide a means to assess the impact and
effectiveness of anti-stigma interventions.
1.4. Stigma scales
Stigma conceptualization in the MI eld has set the foundation for the development of an array of measurement tools
intended to specically address public, self, and family stigma. Some examples of these scales include the Emotional Reaction
to Mental Illness Scale (Angermeyer & Matschinger, 1996), Internalized Stigma of Mental Illness Scale (ISMI; Ritsher, Otilingam,
& Grajales, 2003), the Attribution Questionnaire-27 (AQ-27; Corrigan et al., 2001, 2002); the Devaluation-Discrimination Scale
(Link & Phelan, 2001) and the Self-Stigma of Mental Illness Scale (SSMIS; Corrigan, 2008). Unfortunately, such an abundance of
scales addressing stigma is lacking in the ID eld.
In the ID literature, very few scales have been developed based on a stigma framework; however, several scales attempt to
gauge public attitudes toward disability. In addition, some studies have employed scales intended to measure attitudes
toward general disability groups and not necessarily specic to ID. These include: the Semantic Differential Scale (Osgood,
Suci, & Tannenbaum, 1957), the Scale of Attitudes toward Disabled Persons (Antonak, 1982, 1988), the Attitudes Toward Persons
with Disabilities Scale (Yuker, Block, & Campbell, 1960), the Interaction with Disabled Persons Scale (Gething, 1994), and the
Multidimensional Attitudes Scale (MAS, Findler, Vilchinsky, & Werner, 2007). Further, some scales have examined attitudes
toward specic disability-related issues or situations, such as attitudes toward school inclusion (Multinational Youth
Attitudes Questionnaire; Siperstein, Parker, Noris, & Widaman, 2007), attitudes toward community living (Community Living
Attitudes Scale; Henry, Keys, Jopp, & Balcazar, 1996) or attitudes toward the reproductive rights of people with ID (The Scale of
Attitudes Toward Mental Retardation and Eugenics; Antonak, Fielder, & Mulick, 1993) rather than general stigma toward
individuals with ID. Thus, the current study aims to review the available stigma instruments in the ID eld in order to assess
the need for the development of measures designed explicitly to measure the stigma of ID.
2. Material and methods

2.1. Search strategy
Bibliographic databases including: Pubmed, ERIC, PsycNET, Web of Knowledge, Proquest, Social Work Abstracts, and
Social Science Research Network, were used to search for manuscripts that either developed or employed stigma or attitude
measures in the ID eld. The search was conducted within the title or abstract of the manuscript using the following search
terms: intellectual disability, developmental disabilities, learning disabilities (the term used in the UK), cognitive disability,
mental retardation, attitudes, stereotypes, stigma, questionnaire, and scale. Manuscripts were limited to those published in
English. No limits were placed on the year of publication.
In the search, we aimed to nd manuscripts describing scale development as in most of these manuscripts the scales
themselves were available. When original papers for an instrument could not be located, we sought out studies that had used
these scales to obtain scale information. We also attempted to nd scales by searching for them online, and if scales were not
too old we contacted the authors and asked for the original scale.
2.2. Inclusion criteria
Because scales using the stigma framework were rare, we included manuscripts including scales measuring either stigma
or attitudes toward individuals with ID. We did not include scales that focused on general disability groups or solely on
specic issues (such as school inclusion). We included all scales that were relevant for the measurement of public, self or
family stigma. Development or validation studies of the identied scales were sought out as well as articles using the scales.
A ow chart depicting the systematic review process that was utilized is presented in Fig. 1. The search strategy yielded a
total of 710 potentially relevant manuscripts. After removing duplicate manuscripts, those that appeared to meet the
inclusion criteria were read in full. Thus, 81 manuscripts were examined for more detailed evaluation, of these 31 were
retained for the nal review and 25 additional manuscripts were added through hand-searching, yielding a total of 56
manuscripts.
2.3. Scale evaluation
Given the above search strategy, the full items for 17 of the scales were available. For the additional scales, the description
of the scale items found in the manuscripts was used for scale evaluation. Scales were evaluated based on the following
factors recommended by Kodaka, Postuvan, Ingaki, and Yamada (2010).
752
Fig. 1. Flow chart for systematic review.
2.3.1. Reliability and validity

Reports about internal consistency (Cronbachs a); stability (e.g., testretest or split-half reliability tests) and/or
reproducibility (e.g., replication of factor structure among different populations) were examined. Scales were evaluated for
their use of extensive literature reviews, expert consensus and/or focus group interviews during the process of scale
development.
2.3.2. Multidimensionality
This factor included the comprehensive adoption of the theoretical concepts of stigma or attitudinal dimensions based on
extensive theoretical backgrounds of the concept of stigma or attitudes toward individuals with ID. In this factor scales were
examined for their focus on components of attitudes (affective, cognitive, and emotional) or stigma (stereotypes, prejudice,
and discrimination) constructs. Further, we assessed reports of scale factor structure.
2.3.3. Feasibility and appropriateness of the scale
This factor was based on the assessment of the number of items in the scale and the complexity of the rating method so
that it can include all members of general public. Further, we evaluated the appropriateness or suitability of the measure to a
wide range of participants (e.g., use among various age groups, appropriateness for individuals with ID, use in various
countries and t to a range of languages and cultural backgrounds) as well as suitability to the current year (i.e., when the
scale was last employed).
3. Results
The systematic review retrieved 56 manuscripts describing 24 scales that had been developed and employed to study
attitudes, stereotypes or stigma within the ID eld. Of these, 17 focused on public attitudes or stigma, ve focused on selfstigma (one focused on both public and self-stigma) and three focused on family stigma. Nine of the public stigma scales
were developed in the United States, three in Australia, two in Ireland, and one each in the United Kingdom, Sweden, Canada,
Japan, and Israel; all ve self-stigma scales were developed in the United Kingdom and the family stigma scales were
753
developed in China, Taiwan, and Australia. The following sections report the evaluation of the scales, while more detailed
information about the specic scales can be found in Tables 13.
3.1. Public attitude scales
Table 1 presents reliability coefcient information for the scales reviewed. As seen, reliability was not reported for several
public attitude scales. Most scales focused solely on internal consistency, which was found to be moderate for three of the
scales and good for ve others; while split half coefcient and testretest coefcient were rarely examined (e.g., Clunies-ross
& Thomas, 1986; Hagan, 1980).
In terms of validity, only a few of the scales reported conducting wide literature reviews as a basis for their development,
while others based their development on previously existing scales. It was unclear how the questionnaire items were
derived for most of the scales reviewed. Six public attitude scales (out of 17) did not clearly report evidence of validity, while
several of the scales reported evidence primarily for face validity.
Other types of validity evidence were only reported for a few of the scales. For example, researchers utilizing the Peer
Attitudes toward the Handicapped Scale (PATHS) have reported it to have evidence for construct and factorial validity (Cluniesross & Thomas, 1986). According to the manual, items were derived based on structured interviews with students, parents,
teachers, and counselors and standardized on the responses of over 700 students in the United States (Bagley & Green, 1981).
As another example, the Attitude Behavior Scale (Jordan, 1969) was found to have good content validity as items were
developed along with school psychologists. Construct validity was ascertained as the postulated semantic structure and the
obtained statistical structure were similar. Concurrent validity was inferred from the fact that older, more experienced, and
more knowledgeable samples scored more positively on the scale (Jordan, 1969).
More rigorous validity examinations can be seen in a few of the scales. For example, the construct validity of the Mental
Retardation Attitude Inventory Revised (Antonak & Harth, 1994) was established by conducting factor analyses, which
supported the original four factors (social distance, integrationsegregation, private rights, and subtle derogatory beliefs).
Several examinations of validity were performed for the Classical and Modern Scales of Attitudes Toward People with
Intellectual Disability (Akrami, Ekehammar, Claesson, & Sonnander, 2006), which was found to have construct validity and
partial discriminant validity.
Finally, the most comprehensive scale found in our review was the Attitudes to Disability Scale (ADS; Power, Green, & the
WHOQOL-DIS Group, 2010). This recent scale was developed as part of an international study following the World Health
Organizations WHOQOL methodology (WHO, 1998a, 1998b) and examined the possibility of constructing a single crosscultural attitude scale. Development of the scale was based on an extensive literature search as well as on consultation with a
wide range of people and professionals including people with ID and their families. The researchers used a focus group
design across 12 centers from around the world in order to develop questionnaire items that they subsequently pilot and
eld tested. Exploratory and conrmatory factor analyses yielded four dimensions. Although individuals with ID were
included in this scales development, only general disability was the target of the items rather than a specic focus on
intellectual disability.
Most of the scales reviewed were based on public attitudes (as reected in their titles) rather than specically
addressing stigma. The scales reviewed did not include the constructs of stereotypes, prejudice and discrimination. Attitudes
are generally conceptualized as comprising affective, behavioral, and cognitive aspects (Findler et al., 2007). However, most
of the scales reviewed did not fully include all three of these aspects. For example, the SCATE (Miller & Loukellis, 1982) and
the Behavioral Intent Scale (Roberts & Lindsell, 1997) only address behavioral aspects of attitudes, while only emotional
reactions are examined in the Semi-projective Scale (Weller & Aminadav, 1992) and the Pictographic Scale (Nowicki, 2005).
Although the Attitude Toward Mental Retardation Scale (Gash, 1993) included items focusing on cognitive, behavioral, and
emotional aspects of attitudes, the items were dispersed across the scale factors (see Table 1). Further, the authors do not
report their intention to measure these aspects, but rather this is a byproduct of the way the items are worded.
Some measures utilized factor analyses to examine scale dimensions. For example, the Attitude Toward Mental Retardation
scale (Gash, 1993) provided psychometrics supporting a four-factor structure; however, these factors were not found in
subsequent analyses in other cultures (Tang, Davis, Wu, & Oliver, 2000). Further, these factors were solely psychometric and
not based on theory. As another example, factor analysis was performed on the Behavioral Intention Scale (Roberts & Lindsell,
1997); however, the results revealed only one factor and no multi-dimensions.
The Mental Retardation Attitude Inventory (MRAI) has been one of the most widely employed attitude measures in the ID
eld to date (Antonak & Harth, 1994). The MRAI was developed to measure cognitive, affective, and behavioral aspects of
attitude and based on a preexisting scale of attitudes toward racial minority groups (Harth, 1974). As a result, the subscales
in the MRAI (social distance, integrationsegregation, private rights, and subtle derogatory beliefs) are more comprehensive
than those used in previous scales as items relate to different contexts in which stigma might occuri.e., the school context,
employment, and living arrangements. The items on the ADS (Power et al., 2010) were also developed based on the ABC
model of attitudes. However, it should be noted that the domains on this scale (i.e., inclusionexclusion, discrimination,
gains, and hope) are not strictly the domains of cognition, emotion, and behavior.
754
Table 1
Summary of scales that measure public stigma in ID.
Authors
Country
Description
Validity and reliability
Items and scoring
Published studies
Siperstein (1990)
USA
Adjectives depict affective

feelings, physical appearance and
academic and social behavior.
Three factor structure: popular,
rejected and withdrawn child
Developed by asking
students to lists words to
describe someone they
like or do not like
34 Adjectives
Attitude Behavior Scale-Mental

Retardation
Jordan (1969)
USA
Literature. Content,
construct and concurrent
validity.Inter-item
correlations above 0.60
240 Items
Attitudes To Disability
Scale (ADS)
Power et al. (2010)
UK
Literature. exploratory
and conrmatory factor
analyses.Cronbach
a = 0.760.80
16 Items scored on
5-point Likert scale;
ID form uses smiley
faces response format
Power et al. (2010)
Attitude Toward Mental

Retardation
Gash (1993)
Ireland
Validity not clear.

Reliability not reported.
The 4 factors structure was
not repeated in other
studies
20 Yes or no items
Gash (1993), Gash and

Coffey (1995), Tang
et al. (2000)
Attitudes Toward Persons with

an Intellectual Disability
Questionnaire
Rillotta and
Nettelbeck (2007)
Australia
Constructed via Guttmans facet

analysis. Consists of six levels
(societal stereotype, societal
norm, personal moral evaluation,
personal hypothetical action,
personal feeling and personal
action)
Multidimensional scale
composed of 4 subscales
(inclusion-exclusion,
discrimination, gains and hopes)
measuring attitudes toward
people with disabilities. General
form and personal form
Four-factor questionnaire: social
concern with children with MR;
willingness to form a close
relationship or identify with a
hypothetical child with MR
coming to their class; sociability
toward children with MR;
concern with schooling
arrangements
Unidimensional scale measuring
students attitudes toward
people with ID
Bak and Siperstein (1986),

Castago (2001), Elam and
Sigelman (1983), Hemphill
and Siperstein (1990), Manetti,
Schneider, and Siperstein (2001),
Sigelman and McGrail (1985),
Siperstein and Bak (1985),
Siperstein, Bak, and OKeefe
(1988), Wisely and Morgan (1981)
Kenneth (1970), Zwiebel (1987)
Validity not clear.

Cronbach a = 0.89
Rillotta and
Nettelbeck (2007)
Behavioral Intent Scale
Roberts and
Lindsell (1997)
Australia
31 Items with
maximum score of 124.
Frequency of contact
rated on 5-point scale;
other items use a
4-point Likert scale
10 Items scored on a
4-point scale from
denitely no to
denitely yes
Unidimensional measure of
childrens behavioral intentions
toward a hypothetical classmate.
Items range from very little
involvement to more intimate
behavioral intent. Scale originally
developed for physical
disabilities
Based on previous
measure of friendship.
Face validity.
a = 0.840.93
Nowicki (2005),
Laws and Kelly (2005)
Scale
Adjective Checklist to Measure
Childrens Attitudes
McConkey (1990)
Ireland
Mental Retardation Attitude

Inventory-Revised (MRAI-R)
Antonak and
Harth (1994)
USA
Modern and Classical Attitudes

Scales Toward People with ID
Akrami et al. (2006)
Sweden
Peer Attitudes Toward the

Handicapped Scale (PATHS)
Bagley and
Green (1981)
USA
Pictographic Scale
Nowicki (2005)
Canada
Scale of Childrens Attitudes

Toward Handicaps (SCATE)
Hagan (1980)
USA
Semantic Differential Scale
Fenrick and
Petersen (1984)
USA
Semi projective emotional

attitudes toward mild and
severe mental retardation
Weller and
Aminadav (1989)
Israel
Social Distance
Fenrick and
Petersen (1984)
USA
Ratings of condence in meeting

and working with people with ID
in three areas: contact, reactions
to contact and willingness to
have contact.
composed of 4 subscales (social
distance, integrationsegregation, private rights and
subtle derogatory beliefs)
mental retardation
Classical items (8) tap direct or

open prejudice; Modern items
(11) tap covert and subtle
prejudice
Children rate where they think a
ctional child described should
work (with them or somewhere
else). Items measure 3 subscales:
physical, learning (describe
behaviors common in children
with learning disabilities, and
behavioral)
Measures affective aspects of
attitudes by tapping into
childrens feelings about a target
child
Three behavioral intentions are
examined: friendship, socialdistance and subordinatesuperordination for different
disabilities. Participants are
presented with a drawing of two
gures and a brief narrative
description and asked to indicate
the way they think the nondisabled gure might react to the
gure with a disability
Rate pairs of opposing
descriptions (e.g., helpful-not
helpful; friendly-not friendly)
consisting of 9 categories
persons with mental disabilities
Measure of the degree to which

participants would accept a child
in various social activities
Reliability and validity not

reported in the
manuscript
5 Items rated on a
5-point scale from
denitely yes to
denitely no
McConkey and
Truesdale (2000)
Literature and existing

scale. Construct validity.
Factor analyses. Cronbach
a = 0.91 for the overall
scale; lower internal
consistencies for subscales
(Krajewski & Flaherty,
2000)
29 Items scored on
4-point Likert scale
Partial discriminant
validity (not for all items
on classic scale). Construct
validity. Cronbach a = 0.63
Construct and factorial
validity. Split half
coefcient = 0.89;
testretest
coefcient = 0.75.
Conrmatory factor
analysis supported three
dimensions
Validity not clear.
a = 0.840.93
19 items
Al-Kandari and Salih (2010),

Antonak and Harth (1994),
Hampton and Xiao (2007,
2008), Horner-Johnson
et al. (2002), Krajewski and
Flaherty (2000), Ouellette-Kuntz,
Burge, Brown, and Arseault
(2010), Yazbeck, McVilly, and
Parmenter (2004)
Akrami et al. (2006)
30 Items rated on
5-point scale from
work with me to
stay at home
Clunies-ross and Thomas (1986),

Laws and Kelly (2005)
Nowicki (2005)
Face validity. Split-half

reliability = 0.83;
Cronbach a = 86;
testretest = 0.67
5 Items rated using

drawings ranging from
very negative to
very positive affect
6 Items for each type of
disability. Includes
drawing for each
disability
Validity not clear.Internal

consistency = 0.86
27 Items rated on a
6-point scale
Townsend, Wilton,
and Vakilirad (1993)
Validity not clear.

Reliability not reported
54 Statements are
selected to represent
one of three categories:
severe MR, mild MR or
physically
handicapped
6 Items
Weller and Aminadav (1992)
Internal consistency = 0.67
Miller and Loukellis (1982),

Young (1997)
Condence at Meeting Items
Townsend et al. (1993)
755
756
Table 1 (Continued )
Scale
Authors
Country
Description
Items and scoring
Published studies
Tachibana and Watanabes

scale
Tachibana and
Watanabe (2004a,
2004b)
Japan
Validity not clear.

Reliability not reported
16 Items rated on
5-point Likert scale,
uncertain response
was assigned 0
The Test of Knowledge About

Mental Retardation
Antonak (1994)
USA
Score condensed into 4 groups:

social services for people with
ID; anti-social norm; prosocial norm and independent
life
An error-choice questionnaire,
introduced as knowledge about
mental retardation
questionnaire, measuring
attitudes toward mental
retardation
Literature. Face validity.

Reliability reported as
acceptable
40 Items with
four-option multiple
choice format and
dichotomous questions
Tachibana and
Watanabe (2004a, 2004b),
Tachibana (2005), Tachinaba
(2006) (all studies based
on same sample)
Antonak (1994)
Note. Literature = construction of scale based on literature review. MR = mental retardation.
Table 2
Summary of scales that measure self stigma in ID.
Authors
Country
Description
Power et al. (2010)
UK
See description provided in Table 1.
Cooney et al. (2006)
UK
The Social Comparison

Scale
Dagnan and
Sandhu (1999)
UK
Stigma Scale
Szivos (1991)
UK
Items assess the frequency

participants report experiencing
stigmatized treatment from key
gures in their lives (8) and on
nonthreatening experiences (5).
Adapted from Gilbert and Allen
(1994) to assess individuals
comparison of themselves to others.
Statements begin with when I am
with other people, I generally
feel. . .. Two factors were found:
social attractiveness and
achievement and group belonging.
Assesses participants perceptions of
their own stigmatization on 3 factors
(Feeling Different, Anxiety and Poor
In-Group Concept).
Tool to Measure
Self-Perceived
Stigma
Ali et al. (2008)
UK
Two dimensional scale of perceived

stigma (perceived discrimination
and reaction to discrimination).
Items and scoring
Published studies
Power et al. (2010)
No consultation with individuals

with ID. Validity not
reported.a = .48 - .63
13 Items scored on 5-point

Likert scales
Cooney et al. (2006)
Good total item correlation

(0.28)a = 0.56
6 Bipolar items rated on a

12.5 cm visual analogue scale
Cooney et al. (2006),

Dagnan and Sandhu (1999),
Dagnan and Waring (2004)
Items derived from individuals

with ID and parents perspectives
and from a previous self-image
questionnaire. Factor analyses.
a= .75- .81. Good item total
correlations (.34 - .62)
Literature. Consultation with
individuals with ID. Face and
content validity. Internal
reliability a=.84; test-retest
Kappa .72 and .69
10 Items scored using a 5-pint

Likert scale and blocks of
increasing size
Abraham, Gregory, Wolf,

& Pemberton (2002),
Dagnan and Waring, 2004,
Szivos (1991),
Szivos-Bach (1993)
10 Items with photo images;

Yes-No response with
drawing of thumbs up and
thumbs down.
Ali et al. (2008)
Scale
Attitudes To Disability
Scale (ADS)
Experience of Stigma
Checklist
Note. Literature = construction of scale based on literature review.
757
758
Scale
Authors
Country
Description
Items and scoring
Published studies
Afliate Stigma Scale
Mak and
Cheung (2008)
China
Literature. Concurrent and

construct validity. a = 0.940.95
22 Items scored on a 4-point

Likert scale (strongly disagree to
strongly agree)
Mak and
Cheung (2008)
Caregivers Burden Scale,

Stigma Domain
Chou et al. (2009)
Taiwan
Good construct validity

(.45 inter-domain
correlation).a = .88- .95
2 items scored on a 5-point Likert

scale (never to always)
Chou et al. (2009)
Parent-Perceived
Reactions of Others
Baxter (1989)
Australia
composed of 3 subscales
(cognitive, affective and
behavioral) measuring
internalization of stigma in
caregivers of people with
disabilities
The domain of stigma measures
the degree of stigma that carers
perceived because of having a
family member with ID.
Parents are asked if people react
to their child in any of the listed
ways and if this reaction
distresses them.
Validity by correlation with

stress. No information on
reliability.
8 items rated on 3-point rating

scales.
Baxter (1989)
Note. Literature = construction of scale based on literature review.
Table 3
Summary of scales that measure family stigma in ID.
759
Finally, we also found that several of the public attitude scales reviewed did not focus on cognition, emotional and
behavioral aspects at all. For example, McConkey and Truesdales (2000) measure focused on attitudes related to condence
when meeting a person with ID. A closer review of the Attitudes Toward Persons with an Intellectual Disability Questionnaire
(Rillotta & Nettelbeck, 2007) found that despite its general title, the items are generally limited to only school inclusion. The
Adjective Checklist to Measure Childrens Attitudes (Siperstein, 1980) was found to have three factors (popular, rejected, and
withdrawn child) and not based on a specied theory of attitude formation. Finally, the items on the relatively recent Modern
and Classical Attitudes Scale were structured to measure two forms of stigma a classical form and a modern form, which
arise from peoples tendency to present themselves as socially or politically correct. The classical form is dened as overt
and blatant and taps direct prejudice. The modern form is more subtle and covert and is characterized by denial of continued
discrimination, antagonism, and resentment (Akrami et al., 2006).
3.1.3. Feasibility and appropriateness of public stigma scales
Regarding the length of the scales, ve of the public stigma scales were relatively short (less than 10 items) and nine scales
seem fairly feasible although they include a larger number of items (between 16 and 31 items). A few other scales seem too
lengthy for completion (e.g., the Semi-projective Emotional Attitude and the Attitude Behavior Scale). Feasibility in some of the
scales is attained by use of drawings (SCATE, Hagan, 1980), smiley faces (Power et al., 2010) or yes or no answer format
(Gash, 1993). Items in the Test of Knowledge about Mental Retardation (Antonak, 1994) are aimed at testing knowledge;
however, some individuals might not like the idea of their knowledge being examined.
In terms of appropriateness of the scales, it is important to acknowledge that some of the scales had their last
reported usages (according to our review) more than a decade ago (e.g., The Test of Knowledge about Mental Retardation,
Semi-projective Emotional Attitudes, Attitude Behavior Scale, SCATE), calling into question the relevance of some of the
items in todays society. The public attitude scales we reviewed had been constructed and used primarily in western
countriesnamely, the United States, Australia, Ireland, and Canada. Some instruments were used only by the research
group that developed them. Only a few of the scales were found to have been used in various countries (i.e., ADS, MRAI).
Six of the scales were limited to school aged children and two scales were appropriate only for adult populations. The
ADS scale was utilized only on a sample of individuals with ID and was not utilized on individuals without disabilities
(Power et al., 2010).
3.2. Self-stigma scales
Three of the self-stigma scales were found to have moderate internal consistency estimates, and two report low internal
consistency. Reliability of the Tool to Measure Self Perceived Stigma was examined using internal consistency and testretest.
The Stigma Scale was found to have good item total correlations and internal consistency (Szivos, 1991).
The current review elicited fewer self-stigma scales than public stigma. The self-stigma scales reviewed are summarized
in Table 2. Of the self-stigma scales reviewed, only two reported an extensive literature review as the basis for their
construction. Further, some scales (e.g., Experience of Stigma Checklist, the Social Comparison Scale) were developed without
consulting individuals with ID or caregivers. For other scales, like the Tool to Measure Self-Perceived Stigma, support for face
and content validity was demonstrated by consulting with professionals, caregivers, and individuals through focus groups
and pilot studies with individuals with ID (Ali et al., 2008). Input from parents and individuals with ID were also used in the
development of the Stigma Scale (Dagnan & Waring, 2004). The Social Comparison Scale (Dagnan & Sandhu, 1999) was
reported to have a good total item correlation. Finally, no clear validity information about the Experience of Stigma Checklist
(Cooney et al., 2006) was found in our review.
Three of the scales reviewed specically addressed stigma in their titles. However, similar to the public attitudes scales,
most self-stigma scales focused only on some of the stigma dimensions (i.e., aspects of awareness, agreement, application,
and hurts as proposed by Corrigan, 2008). For example, most items in the Tool to Measure Self Perceived Stigma (Ali et al.,
2008) focused on the awareness of the individual of stigma. Specic subscales included experience of discrimination and
emotional reaction to discrimination. Items on the Experience of Stigma Checklist (Cooney et al., 2006) were developed
specically for the school context. Items on this checklist represented primarily behavioral aspects of stigmai.e., receiving
stigmatized treatment rather than aspects of internalized self-stigma.
Two self-stigma scales did not directly address stigma conceptualizations (Dagnan & Sandhu, 1999; Power et al., 2010).
The Social Comparison Scale (Dagnan & Sandhu, 1999) was based on cognitive perspectives of social comparison, specically,
people with ID who have fewer opportunities for valued roles may be less able to buffer against the effects of negative social
comparisons (Gilbert & Allen, 1994). Finally, the ADS factors of inclusion, discrimination, gains, and prospects, do not include
items to assess the introversion aspects of self-stigma (Power et al., 2010).
3.2.3. Feasibility and appropriateness
Most of the self-stigma scales were relatively brief in length, ranging between 6 and 13 items. Further, most scales
attempted to accommodate for cognitive decits of the study population by using simplied answer formats, such as yes or
760
no response options accompanied by a thumbs up/down drawing and illustrations (Ali et al., 2008), drawings of blocks of
increasing size or a visual analogue (Dagnan & Sandhu, 1999).
Self-stigma scales have been developed as early as 1991 (the Stigma Scale) and as late as 2010 (ADS). All self-stigma scales
were constructed in the UK and all but one (ADS) were used solely in the UK. Further, most of the scales were used with
populations of adults or adolescents and only one was also used with children with ID.
3.3. Family stigma scales
A summary of the family stigma scales reviewed is presented in Table 3. Of the three scales presented, two showed very
good internal consistency scores while the third presented no data on reliability (Baxter, 1989). In terms of their validity,
construction of the Afliate Stigma Scale (ASS) was based on an extensive literature review on associate stigma as well as on
several focus groups. Further, authors used a factor analysis in order to determine the factor structure of the scale and found a
one-factor solution. Both concurrent and construct validity were reported for this scale (Mak & Cheung, 2008). Good
construct validity was also reported for the two stigma items employed within the study by Chou et al. (2009). In the Parent
Perceived Reactions of Others (Baxter, 1989) scale the only validity ascertained was that parental stigma was found to be
correlated with parental stress.
The ASS was constructed based on the conceptualizations of family stigma whereby afliate stigma was proposed to
consist of three interlocking components of cognitions, affect, and behavioral responses. However, factor analyses suggested
a one-factor solution (Mak & Cheung, 2008). Within the Chou et al. (2009) study no specic stigma scale was used, but rather
two items out of a caregiver burden interview were given to examine the degree to which the caregivers felt ashamed of
having a family member with ID; thus focusing only on emotional aspects. Finally, the scale developed by Baxter (1989) was
based on a stress process framework thought to be part of negative life experience such as stigma. This scale was based on
families perceptions of stigma from others rather than on the familys internalized stigma and the scale items measure only
a single dimension.
3.3.3. Feasibility and appropriateness
All three family stigma scales seem to be of feasible length. All items are clearly worded and rated on a Likert-type scale. It
should be noted that most items on the Afliate Stigma Scale are worded negatively. Two of the family stigma scales have
been very recently developed, while the Parent-Perceived Reactions of Others is somewhat older (Baxter, 1989). In terms of
cross-cultural appropriateness, two scales were developed and employed solely in Asian countries and the third in Australia.
As for population, Mak and Cheungs (2008) study focused solely on parents of children with ID. Baxter (1989) examined
parents of children ages three to 19, and the scale was not used, to the best of our knowledge, in any additional studies.
4. Discussion
The current systematic review summarizes the existing scales used to measure stigma and attitudes in the eld of ID.
Most scales target the measure of public attitudes, fewer measure self-stigma, and even fewer measure family stigma.
Several explanations can be provided for this nding. First, similar to the eld of MI, the concept of public stigma appears to
be much further developed conceptually than the concepts of self and family stigma, affording more clarity and ease for the
development of public measures. Second, reports of self-stigma and family stigma might be more affected by social
desirability and other methodological biases, which render the use of qualitative methodology easier to employ than the use
of quantitative scales. Third, recruitment of participants to complete public stigma scales is usually easier as these can be
completed by any members of the general public (e.g., college students) rather than the need to recruit individuals with ID or
their family members. This review highlights the theoretical and methodological limitations of available scales.
4.1. Theoretical limitations of existing scales
We found that most of the public scales reviewed are based on general attitude conceptualization, while self and family
scales employ a stigma conceptualization. This might be the result of family and self-stigma measures being relatively more
recent than the public attitudes measures. However, although most attitude denitions conceptualize attitudes as composed
of three elements, (affect, behavior, and cognition) almost all scales did not reect all these elements in their measurement,
but rather focused on only one or two components a problem which also exists in some of the MI stigma instruments.
Regarding self-stigma, scales have mainly focused on measuring perception or experiences of stigma rather than
internalization of stigma.
An additional interesting nding is that there appears to be a difference in interest in stigma among countries. While
many western countries (e.g., the USA, the UK, and Australia) have shown an interest in public attitudes, scales focusing on
self-stigma were developed solely in the UK, while scales focusing on family stigma were mainly from Asian countries. This
nding suggests that while many countries are aware of the existence of public stigma toward persons with ID, only a few
761
countries examine the ramications on the individual and their family. The relative lack of focus on the individual may be a
result of the contemplation that individuals with ID are not prone to negative effects of stigma (Jahoda et al., 2010), or might
be associated with cultural variations in the social representations of ID. For example, Chinese culture is characterized by
collectivism, or having close linkages between individuals and a greater sense of obligation to the group than to the
individual. Further, Chinese people tend to emphasize the biological roots of ID (Kung, 2001) and may be more prone to
considering children with disabilities as bad seeds and disgraces to their families (Sue & Sue, 1987). As such, they may keep
their children a family secret. Given these beliefs, these families may be exposed to the experience of family stigma (Mak &
Cheung, 2008) while placing only a limited amount of focus on self-stigma. This nding strengthens the need to expand this
line of research and develop culturally sensitive scales.
4.2. Methodological limitations of existing scales
Our review has brought to light several methodological limitations of the existing scales. First, some of the scales are quite
outdated and a number of items may no longer be relevant in present day. Second, family- and self-stigma scales have been
developed more recently, suggesting there is emerging interest in this area, but that scales are still in need of further
development and renement. Third, some self-stigma scales were developed without consulting individuals with ID and
other key stakeholders, limiting their content validity. We encourage additional qualitative research with ID stakeholders,
including both individuals with ID and their families, as a rst stage in scale construction in order to identify the stereotypes
specic to ID. In turn, these stereotypes may inform application of the four stage of self-stigma model as has been proposed in
the MI eld (see Corrigan, 2008).
Fourth, given that most self-stigma and family-stigma scales have focused mainly on the experience of stigma, we argue
that future scales should include measures of actual experiences of stigma (by individuals with ID and/or their families),
perceived public stigma (that may or may not be accurate), stigmatizing attitudes that individuals with ID and their family
members hold toward other individuals with ID, and, nally, self-endorsement of (self-stigma about) oneself or ones family
member. Measuring these different aspects will allow researchers to parse out the relationship between these factors.
Finally, wording on some of the scales (for example, Afliate Stigma Scale) are quite negative. In future scale development
we would advise for the construction of a more balanced scale with both positively and negatively worded items. Given these
limitations and in order to advance our knowledge and research in the area of stigma and ID, we should rst ask ourselves
why this area lags behind the stigma work being done for MI, and how can this gap be narrowed in the future.
4.3. Why has stigma conceptualization been rarely used in the ID eld?
A few hypotheses might be offered to explain why the focus on stigma in the ID eld falls short of the degree of richness
that exists in the MI eld. First, some of the ID scales focus more on social inclusion aspects rather than on stigma. Some
researchers have argued for the need to throw away the term stigma suggesting that it has not provided a rallying point for
collective strategies to improve access or challenge prejudice (Sayce, 1998). It has also been pointed out that there is a danger
that a word which originally meant a mark of disgrace on an individual will emphasize a focus on the psychological
experience of shame and away from the meanings added by later academics and activists, namely social and economic
patterns of exclusion. Thus, it has been suggested that discrimination or exclusion may be better terms (Sayce, 1998).
This might mean that stigma and inclusion are viewed as two separate or even opposing constructs, with the goal of
promoting inclusion of individuals with ID. However, we would like to argue that stigma and inclusion are not opposite but
rather complementary constructs on the same continuum. Indeed, anti-stigma initiatives may be one useful tool to promote
social-inclusion of individuals with ID (Cobigo & Stuart, 2010). For true inclusion to occur, research must be able to map the
stigma within the community (Corrigan, 2002).
Another reason for limited focus on stigma within the ID eld might be the belief held by some that individuals with ID
are spared any negative impact from stigma (Todd, 2000). However, recent literature clearly shows that some individuals
with ID are indeed aware of stereotypes about them and are prone to their negative consequences (Jahoda et al., 2010). Thus,
there is a need for continuing research and scale development focusing on adapting the self-stigma framework to the ID eld.
In this adaptation process, researchers need to be aware of the limitations of employing quantitative research methods
among individuals with ID. Likert scales can be appropriate for individuals with borderline or mild cognitive impairment
(Hartley & MacLean, 2006); however, individuals with more severe ID may not be able to respond in a reliable and valid manner
that is accessible or understood by the researcher (Cummins, 2002). Scales could incorporate a pre-testing protocol to determine
whether, and to what level of complexity, respondents are able to use the scale (Cummins & Lau, 2005), use simple and concrete
wording, and a reduced choice format and illustrations to enhance comprehension (Hartley & MacLean, 2006). Possibly one of
the more challenging tasks for researchers would be in constructing a measure that could be used with individuals who have
lower cognitive abilities and most likely would require a an instrument which is accessible to their limited verbal skills.
4.4. Applying stigma conceptualization to the ID eld
One of the criticisms regarding stigma has been that stigma directs the attention to an attribute within the person rather
than on the individuals who produce the stigma (Sayce, 1998). Thus, this leads to a different understanding of the
762
responsibility for the problem, which, consequently leads to a different plan of action (Sayce, 1998) with more focus on the
individual rather than on the larger society and environment. One of the ways of advancing the area of stigma and ID is
applying a clear conceptualization of stigma during scale development.
Currently, most existing scales have focused on the construct of attitude; which, although important, does not
successfully capture all of the steps involved from identifying differences in others and forming attitudes about those
differences to discrimination. Additionally, general attitude research is less focused and specic than the stigma concept. The
construct of stigma seems to be a broader and more dynamic construct through which one can start the investigation of the
impact on individuals with disabilities. Moreover, stigma offers a framework for conceptualizing the formation and
allowance of discriminatory practices based on differential power that exists in social relationships and allows for more
targeted points of intervention.
The current dearth of psychometrically adequate scales based on stigma conceptualization in the area of ID makes it
difcult to examine and consolidate ndings and form empirically based recommendations to alleviate its negative effects.
Thus, it is important to examine what researchers can learn from MI models and how they might be applied to the study of
stigma in the ID world. Applying Corrigan and Watsons (2002), conceptualization of stigma as composed of stereotypes,
prejudice, and discrimination provides us with a possible framework for examining the different elements of stigmatizing
attitudes and their behavioral consequences, in effort to gauge stigma change initiatives. Using this model will make it easier
to examine the phenomena underlying stigma and make them accessible to empirical research.
At the rst stage of research, researchers should attempt to identify the common stereotypes related to ID stigma. This can
be done by employing qualitative research methods including focus groups or face-to-face interviews. We propose that such
qualitative methods should include various stakeholder groups including individuals with ID, family caregivers, and care
providers.
Given the literature provided, stigma may be considered as a process moving from public to the individual levels of self
and family (Larson & Corrigan, 2008; Phelan et al., 1998). Thus, it is important to develop scales to measure each of these
types of stigma. This will allow researchers to examine the associations between different types of stigma and learn about
the impact of stigma on individuals and families, something that the available scales permit only partially and incompletely.
Further, family stigma scales can be employed among various members of the family as it is possible that different
stereotypes are attached to different family members depending on their roles (e.g., parents, siblings, and children).
Through the development of adequate measurement tools one can examine the extent and severity of stigma in a given
society, and with regard to the specic disability group of ID, as it may differ from other disability groups. This will bring
about public awareness interventions in order to promote positive change. Developing measures of stigma based on this
model may prove useful for program evaluation in the eld of ID services, and for assessing anti-stigma interventions.
4.5. Limitations and future directions
The primary limitation of the current review is the possibility that the search was not exhaustive of all relevant literature.
The review was limited to English published studies. Further, for several of the scales detailed manuscripts explaining
questionnaire development were not found.
5. Conclusion
In this article we have summarized the existing literature on ID stigma with special emphasis on the scales available in
the literature. Although a large number of public attitude scales exist, most do not directly address stigma. Further, given the
scarcity of scales in self-stigma and family-stigma, we argue there is a need for additional scale development. We suggest
that three separate scales should be developed; one each for measuring public, family and self-stigma. However, we advise
that the scales should examine similar stereotypes and issues in order to be able to examine the development (or association)
from public stigma to self-stigma and family-stigma.
Acknowledgements
We would like to thank Nev Jones and Russel Houser for their helpful suggestions on a previous draft of this manuscript.
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Research in Developmental Disabilities 33 (2012) 748765

Contents lists available at SciVerse ScienceDirect

Research in Developmental Disabilities

Stigma and intellectual disability: A review of related measures and

* Corresponding author. Tel.: +972 2 5881377; fax: +972 2 5883927.

S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765

S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765

S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765

2. Material and methods

S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765

Fig. 1. Flow chart for systematic review.

2.3.1. Reliability and validity

S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765

Validity and reliability

Items and scoring

Adjectives depict affective

Attitude Behavior Scale-Mental

Power et al. (2010)

Power et al. (2010)

Attitude Toward Mental

Validity not clear.

Gash (1993), Gash and

Attitudes Toward Persons with

Constructed via Guttmans facet

Bak and Siperstein (1986),

Validity not clear.

Behavioral Intent Scale

S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765

Mental Retardation Attitude

Modern and Classical Attitudes

Akrami et al. (2006)

Peer Attitudes Toward the

Scale of Childrens Attitudes

Semantic Differential Scale

Semi projective emotional

Ratings of condence in meeting

Classical items (8) tap direct or

Measure of the degree to which

Reliability and validity not

Literature and existing

Al-Kandari and Salih (2010),

Clunies-ross and Thomas (1986),

Face validity. Split-half

5 Items rated using

Validity not clear.Internal

Validity not clear.

Weller and Aminadav (1992)

Internal consistency = 0.67

Miller and Loukellis (1982),

S. Werner et al. / Research in Developmental Disabilities 33 (2012) 748765

Condence at Meeting Items

Townsend et al. (1993)

Validity and reliability

Items and scoring

Tachibana and Watanabes

Validity not clear.

The Test of Knowledge About

Score condensed into 4 groups: