Measuring health-related stigma a literature review

Wim H. van Brakel, MD, MSc, PhD

Suggested keywords:
assessment, attitude, discrimination, HIV/AIDS, leprosy, measurement, scales, stigma

Correspondence address:
Dr. Wim H. van Brakel
Royal Tropical Institute
Leprosy Unit
Wibautstraat 137 J
1097DN Amsterdam
The Netherlands
Tel. + 31 (0)20 693 9297
Fax +31 (0)20 668 0823
Email: <[email protected]>

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Abstract
A literature review was conducted to review work done on measuring health-related stigma.
References were obtained through a PubMed (Medline) and ScienceDirect search and through
examining relevant bibliographies. The Internet was searched and relevant publications and
reports downloaded. Collaborating partners of the International Consortium on Stigma Research
contributed some draft reports and instruments. Sixty-three papers were selected that
addressed the issue of measurement of stigma or related constructs and that contained a
sample of the instrument or items used. Three unpublished studies were also included in the
review.
The different approaches used or recommended to assess health-related stigma can be broadly
grouped in four categories. First, assessing the experience of actual discrimination and/or
participation restrictions on the part of the person affected; second, assessment of perceived or
internalised stigma; third, assessment of attitudes and/or practices towards the people affected
and, fourth, screening for discriminatory and stigmatising practices in (health) services,
legislation, media and educational materials. Within each of these approaches, different
research methods have been used, including questionnaires, qualitative methods, indicators
and scales. The characteristics of each of the selected instruments are described and
compared.
The studies reviewed indicate that stigma related to chronic health conditions such as
HIV/AIDS, leprosy, tuberculosis, mental health and epilepsy is a global phenomenon, occurring
in both endemic and non-endemic areas. Stigma has a severe impact on individuals and their
families, as well as on the effectiveness of public health programmes. Despite enormous
cultural diversity across the world, the areas of life affected are remarkably similar. They include
marriage, interpersonal relationships, employment, education, mobility, leisure activities and
attendance at social and religious functions. This suggests that development of generic
instruments to assess health-related stigma may be possible. Data obtained with such
instruments would be useful in situational analysis, advocacy, monitoring and evaluation of
interventions against stigma and research to better understand stigma and its determinants.
The conclusions from this review are that 1) the consequences of stigma affect the quality of life
of individuals, as well as the effectiveness of public health programmes, 2) many instruments
have been developed to assess the intensity and qualities of stigma attached to leprosy, mental
illness, epilepsy, disability and HIV/AIDS, but often these have been condition-specific and, 3)
the similarity in the consequences of stigma in many different cultural settings and public health
fields suggest that it would be possible to develop a generic set of stigma assessment
instruments. To achieve this aim, existing instruments should be further developed or adapted,
avoiding duplication and building on and collaborating with current projects with similar aims.

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Introduction
Stigma is a phenomenon associated with many chronic health conditions, including leprosy,
HIV/AIDS, mental illness, epilepsy, disability and tuberculosis. Stigma and its psychosocial
consequences cause indescribable suffering to those who are stigmatised (Frist 1996;Jacoby et
al. 2004;Kaur & van Brakel 2002;Nyblade et al. 2003) In addition, stigma has indirect but
strongly negative implications for public health efforts to combat the diseases concerned.(Link &
Phelan 2001;Nicholls et al. 2003;Piot 2001;Weiss & Ramakrishna 2001) Both personal effects
and negative public health impact are surprisingly similar for a wide range of chronic stigmatised
conditions. The effects are summarised in Table 1. The effects on the affected individual include
psychological stress, depression and other psychiatric morbidity, fear, marital and relationship
problems, other social participation restrictions such as loss of employment or reduced
employment opportunities and reduced education opportunities, increased (risk of) disability and
advanced disease. Many negative effects on public health programmes and interventions have
been reported. Important examples are delay in diagnosis and treatment, resulting in continuing
risk of disease transmission in case of infectious diseases and in more severe morbidity and
poorer treatment prognosis in most conditions (Jaramillo 1998;Ngamvithayapong et al.
2000;Nicholls et al. 2003;Piot & Coll Seck 2001). Concealment may result in continued risk
behaviour and failure to embrace preventive behaviour in conditions such as HIV/AIDS and TB
(Adetunji & Meekers 2001;Rahlenbeck 2004) and in poor treatment adherence or default from
treatment, as has been reported in leprosy, TB, HIV/AIDS, mental illness and epilepsy (Conrad
1985;Heijnders 2002;Sumartojo 1993;Weiser et al. 2003). In TB and HIV/AIDS, poor treatment
adherence increases the risk of the development of drug resistance (Bangsberg et al.
2000;Bangsberg et al. 2004;Wahl & Nowak 2000).
Many studies have documented stigma associated with a wide variety of chronic health
conditions in the past few decades, particularly in mental health, epilepsy, leprosy, HIV/AIDS
and other chronic, disabling conditions. Despite this knowledge and the far-reaching
consequences of stigma, comparatively little progress has been made in systematically
addressing stigma, and the often resulting discrimination, in public health programmes. Many
stigma reduction interventions have been carried out, but their effectiveness is often not known
(see paper van der Meij & Heijnders). This is partly because tools to measure the impact have
not been available, particularly not in developing country settings. The lack of progress in this
area is due in part to the difficulty of reliably measuring complex psychosocial phenomena such
as stigma. Quite a number of scales and indicator sets have been developed, but these usually
apply to stigma in one particular health field only. It would seem beneficial if stigma assessment
instruments were to be developed that could be applied across a range of public health areas.
This would allow assessment of stigma reduction strategies and interventions and comparison
between different approaches. In addition, good instruments are essential for stigma research.
Link et al. stated, Essential to the scientific understanding of stigma is our capacity to observe
and measure it. (2004, in press). Since a number of instruments have been developed in the
past, it may not be necessary to design new instruments, but merely to adapt or validate
existing instruments for use in additional target groups and cultural settings.
Definitions
In the literature we find many definitions of stigma and related phenomena. For the purpose of
this review we will adopt the following working definitions.
Stigma
1. A social process that exists when elements of labelling, stereotyping, separation, status loss, and discrimination
occur in a power situation that allows them (Link & Phelan).
2. A social process or related personal experience characterised by exclusion, rejection, blame or devaluation that
results from experience or reasonable anticipation of an adverse social judgement about a person or group. In
health related stigma, this judgment is based on an enduring feature of identity conferred by a health problem or
health related condition. (Weiss and Ramakrishna).
Enacted stigma
Actual experiences of discrimination
Perceived (or internalised or felt) stigma
1. The devaluation, shame, secrecy and withdrawal triggered by applying negative stereotypes to oneself. (Corrigan,
1998)
2. The fear of being discriminated against (Siyam'kela 2003)

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Discrimination
Unjustifiably different treatment given to different people or groups1 Any measure entailing a distinction among persons
depending on their confirmed or suspected health status (Carael et al. 2000).
Participation restriction
Problems an individual may experience in involvement in life situations (ICF, WHO, 2001).
Stereotype
A belief that all members of a group possess the same characteristics or traits exhibited by some members of that
group.
Indicator
An indicator is the measure used to assess if an objective has been achieved or what progress has been made.

We will use the term measurement in a broad sense including both quantitative and qualitative
aspects of the phenomenon measured. Some prefer to use assessment since this does not
have the same quantitative connotations. However, many publications refer to the
measurement of stigma, even when qualitative aspects are included. Using the current broad
meaning of measurement, both terms can be used interchangeably.
Purpose
The purpose of the paper is to review published reports of instruments developed to assess and
measure health-related stigma and discrimination in the fields of HIV/AIDS, leprosy,
tuberculosis, mental health, epilepsy and a number of other health conditions. The review may
provide the basis for the development or adaptation of a set or generic tools to assess stigma in
different health conditions in a variety cultural settings.

Methods
To review the work done to date on measuring stigma related to leprosy, a literature study was
done. References were collected through a PubMed (Medline) and ScienceDirect search on the
keywords stigma or discrimination combined with scales, measurement or assessment. The
same search was used for title words. In addition, relevant bibliographies were scanned for
additional references. The Internet was searched for reports and publications not formally
published in scientific journals. Collaborating partners of the International Consortium on Stigma
Research contributed several draft reports and instruments. Only English language papers and
reports that included the scale items, questions or indicators used or developed, or for which
these were available separately, were included in the review. Generally, only papers describing
the actual development of the instrument(s) have been reviewed. In a few instances, where
additional studies offered further validation of a particular instrument or validation in different
health field, these have been included.

Results
Sixty-three papers were selected that addressed the issue of measurement of stigma or related
constructs. Five studies as yet unpublished or still in progress were also included in the review.
The available instruments will be presented separately for each public field, before attempting to
draw out any common features. However, first we will look briefly at the different approaches
used to assess stigma and at the types of tools that have been developed.
The different approaches have been used or recommended to assess health-related stigma can
be broadly grouped in four categories:
1. Experience of actual discrimination and/or participation restrictions on the part of the person
affected. People with a (potentially) stigmatised health condition are interviewed about any
actual experiences of discrimination they have had.
2. Assessment of perceived or internalised stigma
People with a (potentially) stigmatised health condition are interviewed about feelings of
1

Manser & Thompson (eds.). (1999) Combined Dictionary Thesaurus. Ediburgh, Chambers

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fear, shame, guilt, etc. they may experience.

3. Assessment of attitudes and/or practices towards the people affected
Members of the community (general public) or of specific groups (e.g. care providers) are
interviewed about attitudes they or others have towards people with a particular health
conditions. Similarly, (reported) behaviour towards such people may be documented.
4. Screening for discriminatory and stigmatising practices, services, legislation and materials
Health services
Health services are audited to look for arrangements and practices that may be
stigmatising or destigmatising.
Legislation
Legislation is reviewed for laws that may be stigmatising or discriminatory and to check
whether anti-discriminatory legislation is in place.
Media
A systematic review is done of news coverage during a certain period looking for
articles or programmes conveying stigmatising or destigmatising messages.
Educational materials
A systematic review is done of educational materials used in schools and other
education facilities relating to stigmatised conditions to see whether they convey
stigmatising or destigmatising messages.
Within each of these approaches, different research methods may be used. The most
commonly used methods include:
Questionnaires
Questionnaire may be closed or open or interview guides. Often these contain items
collecting data about knowledge, attitudes and reported practices (KAP).
Qualitative methods
Assessment based on qualitative methods, such as key informant interviews, focus group
discussions and participant observation.
Indicators
Indicators are often used in sets. They provide separate information for each indicator.
Together they may give a profile of stigma and discrimination, but they cannot be
summarised in one measure, unless they have been developed as a scale.
Scales
Scales are quantitative instruments intended to give a numerical result that indicates the
severity or extent of the phenomenon measured.
The instruments reviewed for this paper are listed in Table 2. The condition-specific instruments
will be reviewed by public health field, first the infectious diseases, followed by mental health,
epilepsy and other disability.
Generic instruments
Only one instrument, the stigma scale derived from the Explanatory Model Interview Catalogue
(EMIC), has been used with a number of different health conditions to measure stigma in terms
of negative community attitudes (Weiss et al. 1992). The original scale contained 12 items and
is only one part of a catalogue of instruments used to study different cultural and
epidemiological aspects of a health condition. Responses are coded on a 0-3 ordinal scale (0 =
no, 1 = uncertain, 2 = possibly of conditionally and 3 = yes). The EMIC stigma scale only covers
certain areas of life that may be affected by stigma, namely, concealment, avoidance, pity,
shame, being made fun of, respect and marriage (prospects). In addition, its psychometric
properties are only partly known. In particular, data on construct validity, stability and
responsiveness to change are lacking, while test-retest reliability has only been evaluated on a
sample of 18 subjects. In my opinion, the strength of this instrument lies 1) in its simplicity and
2) in the fact that its utility has been demonstrated in different cultural settings and with very
different health conditions. The first study was on mental health and leprosy in India (Weiss et
al. 1992). Subsequently, the instrument has been used with various modifications to assess
attitudes to a number of other conditions, including depression (Raguram et al. 1996),
onchocerciasis (Brieger et al. 1998;Pan-African Study Group on Onchocercal Skin Disease
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1995;Vlassoff et al. 2000), tuberculosis (Weiss et al. 2004) and Buruli ulcer (Stienstra et al.
2002).
Two other scales designed to be generic instruments measuring stigma-related constructs are
the The Child Attitude Toward Illness Scale (CATIS) (Austin & Huberty 1993;Heimlich et al.
2000) and the Participation Scale (van Brakel et al., submitted). The CATIS is a 13-item
instrument validated for use with children aged 8-12 and with adolescents (Austin & Huberty
1993;Heimlich et al. 2000). The psychometric properties were generally very good in samples of
children with epilepsy and with asthma. The Participation Scale is based on the terminology and
structure of the International Classification of Functioning, Disability and Health (ICF)(World
Health Org 2001). It consists of 18 items with a two-step, 5-point response scale. Criterion
validity was checked against an experts score. The Spearman correlation coefficient was 0.44
(N=227, p = 0.005). Convergent validity was assessed by correlating the Participation Score
with a measure of impairment severity (Spearman correlation coefficient 0.39 (N=724), p <
0.001). Internal consistency was very high, with a Crohnbachs alpha of 0.92 and an item to
total correlation range of 0.33 0.74. Construct validity was confirmed by factor analysis. The
first factor (participation) explained over 90% of the variability. Inter-interviewer reliability (Intraclass correlation coefficient) was very good at 0.80 (N=296) and intra-interviewer stability after
the 4 weeks scored 0.84 (N=210). Discrimination between people affected by leprosy or
disability and controls (people without leprosy or disability) was excellent. Responsiveness to
change was satisfactory with a statistically significant difference in scores between baseline
data and post life-change data (N=67).
Leprosy
While very few actual scales have been developed, many studies have assessed attitudes to
people affected by leprosy, using a variety of questionnaires. Large studies investigating
attitudes in the general population were done in Sarawak (Chen 1986), Ethiopia (TekleHaimanot et al. 1992), Myanmar (Myint et al. 1992), India (Gopal 1998;Raju & Kopparty 1995)
a
and Nepal (de Stigter et al. 2000). Only two scales have been developed, but neither
specifically targeting stigma. The Dehabilitation Scale of Anandaraj (1995) covered social
participation and self-esteem, while the recently developed Participation Scale measures the
effects of stigma, among other factors, on (social) participation of people affected by leprosy,
disability or other stigmatised conditions (van Brakel et al., submitted see above). The
Dehabilitation Scale is a 52-item instrument covering four areas related to stigma, family
relationships, vocational conditions, social interaction and self-esteem (Anandaraj 1995). The
items consist of positive or negative statements, with 5-point Likert-type response scales
(strongly agree to strongly disagree). The results are summed, divided by the maximum
possible score and multiplied by 100 to get the score-quotient. No published studies were
found using this scale.
Dr. P.K. Gopal developed a questionnaire designed to identify target groups for socioeconomic
rehabilitation (Gopal 1998). It contains 14 items related to attitude or practice that were to be
answered with yes/no. If the respondent answered yes on 50% or more of the items, (s)he was
considered in need of socioeconomic rehabilitation. A large study (53,000) was conducted in
India using this questionnaire, but the results have not been formally published.
HIV/AIDS
Ten out of the 14 instruments reviewed were developed for use in the United States. Only the
best validated and least specialised instruments are discussed here. The AIDS Attitude Scale
(Froman et al. 1992;Froman & Owen 1997;Froman & Owen 2001) has been used in a number
of studies since 1992. The earlier version was developed to measure attitudes to AIDS among
health care personnel, while the most recent version was adapted to assess attitude among the
general public. Validity has been well established. Another scale measuring public attitudes is
the Attitudes towards AIDS scale developed in Brazil (Moriya et al. 1994). It consists of 25 items
and psychometric properties have been shown to be good. A different type of instrument is the
Protocol for identification of discrimination against PLWH developed by UNAIDS, an indicator
a

van Brakel WH, Bhatta I, Anderson AM, Engelbrektsson U. Preliminary results from a Leprosy Elimination Campaign
conducted in Parwat District, West Nepal. Paper presented at the 2nd international conference on the elimination of
leprosy, New Delhi, India, 11-13 October 1996.

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based on a checklist of 37 possible ways discrimination may have occurred (2000). The
checklist documents actual, verified instances of discrimination against PLWHA. After very
thorough investigation by several expert field teams, the items for which instances of
discrimination can be found is decided. The number of items for which no evidence of
discrimination is found is divided by 37 to give the degree of non-discrimination. The authors
stress that the Indicator and the protocol are not scientific devices. The Discrimination Indicator
has not yet been used in studies and its psychometric properties are unknown. The 40-item HIV
Stigma Scale developed by Berger et al. measures stigma perceived and experienced by
PLWHA (Berger et al. 2001). The items are formulated as statement and responses are given
on a 4-point agreement scale. The psychometric properties of the scale have been tested in a
large sample of diverse background. The results were very good. Apparent overlap between
items and the high alpha coefficient (0.96) suggest that the instrument could perhaps be
shortened without loosing validity. The Policy Project, South Africa, developed the Siyamkela
indicator set (2003). The 41 indicators in the set measure stigma and discrimination both from
the perspective of PLWHA and of the community. Each indicator asks for the number of PLWHA
who have experienced a particular type of discrimination or the number of people who have a
particular opinion about or feeling towards PLWHA. The Siyamkela set intends to provide a
profile of stigma, not a summary measure. The psychometric properties of the indicators have
not been tested. In February 2004, the USAID Inter-Agency Working Group on Stigma and
Discrimination (IWG S&D) met to discuss and refine a similar list of indicators related to
2
HIV/AIDS stigma and discrimination. The resulting set is currently being piloted in Tanzania.
The indicators have been included in the indicator list.
Tuberculosis
In the field of tuberculosis studies investigating TB-related stigma have mainly used qualitative
research methods (Johansson et al. 2000;Long et al. 2001;Rubel & Garro 1992). Jaramillo
carried out a survey in Colombia exploring the correlates of prejudice, as an attitudinal
component of this stigma. Results show that local beliefs about the transmission of the disease
are the main significant predictor of the negative attitudes (Jaramillo 1998). Macq et al. are
developing an instrument to assess stigma related to tuberculosis in Nicaragua (2004,
submitted). Another current research project in Thailand, led by the University of Carolina, aims
to develop a new measure of stigma in patients co-infected with TB and HIV (Van Rie et al.).
Other stigmatised infectious diseases
A few studies have measured at stigma related to onchocerciasis (Brieger et al. 1998;Vlassoff
et al. 2000) and Buruli ulcer (Stienstra et al. 2002), but these have used a stigma scale derived
from the EMIC described above. Other infectious diseases known to be associated with stigma
are lymphatic filariasis (Gyapong et al. 1996) and leishmaniasis.
Mental illness
The field of mental health perhaps has the oldest instruments available for measuring stigma.
Assessment has focussed on the attitudes of the general public towards people with mental
illness, as well as on internalised stigma as experienced by the people affected. One of the
earliest scales found in the literature was the Opinions about Mental Illness (OMI) scale (Cohen
& Struening 1962;Struening & Cohen 1963). The 51-item version had good construct validity
and international consistency. Taylor & Dear further developed the OMI, by adding a subscale
to measure community mental health ideology (1981). The Community Attitudes to Mental
Illness (CAMI) measures attitudes in the general population and has 40 items covering 4 subscales on authoritarianism, benevolence, social restrictiveness and community mental health
ideology. Psychometric properties were tested and found to be adequate in several samples in
the USA and Canada. Angermeyer and Matschinger developed the Emotional Reaction to
Mental Illness Scale to examine to what extent personal experience with mental illness might
influence attitudes towards the mentally ill (Angermeyer & Matschinger 1996). The instrument
assesses emotional reactions toward persons with mental illnesses. Two vignette descriptions
were used, one describing schizophrenia and the other depression. The original scale consisted
of 18 items, with a 5-point response scale, each assessing a single emotional response. The
final instrument included the four items for each component, aggressive emotions (e.g., anger),
pro-social reactions (desire to help, sympathy) and feelings of anxiety (e.g. fear). According to
2

HIV/AIDS-related Stigma and Discrimination Indicators Development Workshop Report. February 10, 2004

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Link et al., This instruments key strengths are its assessment of affective experiences of the
stigmatizer which have previously been under-assessed, its demonstrated reliability, and its
validity in demonstrating a predicted pattern of relationships with the construct of previous
contact with mentally ill people. (2004, in print).
An instrument aimed at measuring perceived stigma among people with mental illness is the
Internalised Stigma of Mental Illness scale (ISMI), developed by Ritsher et al. (2003). The ISMI
comprises 5 sub-scales with in total 29 items phrased as statements. The sub-scale domains
are alienation, stereotype endorsement, discrimination experience, social withdrawal and stigma
resistance. Construct validity and other psychometric properties were extensively tested in a
sample of 127 mental health outpatients with a variety of diagnoses at a Veterans
Administration medical centre. The results were very good, but additional validation would be
required with people from different backgrounds. Particularly women were underrepresented in
the sample (6.4%). Corrigan et al. have developed a series of scales designed to assess
attitudes, affect and behavioral intentions related to a hypothetical person with mental illness
(2001a;2001b;2002;2004). The General Attribution Questionnaire consists of 20 questions
about a person or persons with mental illness. Responses are coded on 9-point opinion scales
(ranging from not at all to very much). The psychometric properties of the instrument are not
clear. The same is true for the Attribution Questionnaire-27 (AQ-27) and the Attribution
Questionnaire-Short Form (AQ-SF). These use vignettes that paint word pictures of a particular
person with mental illness and then ask questions about attitudes and emotions concerning this
person. Different vignettes are used, e.g. male, female, danger/no danger and controllability of
cause/no controllability. If vignettes describing people affected by other stigmatised conditions
were used, the AQ-27 and AQ-SF may also be suitable as generic instrument. However, the
validity of this would need to be evaluated. The Psychiatric Disability Attribution Questionnaire
comprises 6 sets of 6 statements (mixed) on attitudes to and opinions about people with 6
different conditions (cocaine addition, AIDS, cancer, psychosis depression and mental
retardation) (Weiner et al. 1988). The items represent controllability, stability and pity. Link et al
constructed a twelve-item scale measuring the extent to which a person believes that mental
health patients will be devalued and discriminated against (Link & Phelan 2002). Other
investigators have assessed people's attitudes towards mental health in Ethiopia and Nicaragua
(Alem et al. 1999;Penayo et al. 1988;Shibre et al. 2001;Shibre et al. 2003) and in India (James
et al. 2002;Raguram et al. 1996;Raguram et al. 2004), but, except for the studies done by
Raguram, copies of the instruments used were not available.
Epilepsy
In the field of epilepsy, perceived or internalised stigma has been the major area of study. The
oldest study identified is the one by Ryan et al. (1980). Their 21-item scale was validated for
use with older adolescents and adults. Westbrook et al. designed a 3-item scale to measure
perceived stigma specifically among adolescents (1992). Ten years later, a 5-item questionnaire
was used in a large survey of attitudes to epilepsy among high students in the United States
(Austin et al. 2002). Austin and colleagues also developed two scales to measure stigmarelated experiences among children with epilepsy (Austin et al. 2004;Austin & Huberty 1993). In
2004, Austin and colleagues published two new short scales to assess stigma experience
among children, one to be administered to the children themselves and one for their parents.
Both scales were found to have strong psychometric properties (Austin et al. 2004). Jacoby
developed an 8-item scale to assess perceived stigma among adults with epilepsy (Jacoby et
al. 1993). The scale uses Yes/No responses. In another study, she used a brief 3-item scale,
modified from one designed by Hyman for use with stroke patients (1971). Convergent validity
and internal consistency were found to be satisfactory (Jacoby 1994). Baker et al. used the
instruments developed by Jacoby in a large study to compare perceived stigma among people
with epilepsy between 15 countries in Europe (Baker et al. 2000). Cramer et al. developed an
instrument to assess health-related quality of life among adolescents with epilepsy, containing
10 stigma-related items (Cramer et al. 1999). Validity and reliability were reported to be good. A
large study in Ethiopia compared stigma in a rural community related to epilepsy with that of
leprosy using a questionnaire with 8 items relating to stigma (Tekle-Haimanot et al. 1992). Aziz
et al. conducted a cross-sectional study in Pakistan to assess knowledge, attitudes, stigma and
handicap among people with epilepsy. Their 15-item questionnaire contained 12 questions
related to stigma and attitudes with Yes/No answers.
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Other disability
Investigators working in general rehabilitation have developed many scales assessing
constructs related to stigma, such as handicap and (social) participation, but we did not find a
scale designed specifically for measuring stigma related to disability in general. Stigma is a
major cause of handicap and participation restrictions (van Brakel et al., submitted). Most scales
assess perceived stigma and experiences of participation restrictions. The recently developed
Participation Scale has been validated for use with people with non-leprosy-related disability
also (see above). The Perceived Handicap Questionnaire (PHQ) measures perceived handicap
across five of the six life domains that make up the construct of Handicap (physical
independence, mobility, occupation, social integration and economic self-sufficiency)
(Kuptniratsaikul et al. 2002;Tate et al. 1994). The instrument contains one item per domain. The
self-administered London Handicap Scale (LHS) assesses the impact of chronic disease on all
six handicap dimensions of the International Classification of Impairment, Disability and
Handicap (WHO 1980), the five mentioned above and orientation (Harwood et al. 1994;Lo et
al. 2001). The instrument has six items and is meant for comparisons between groups of
subjects (Harwood et al. 1994). Because of the way questions and response levels are
formulated, the validity of the instrument in low and middle-income countries is questionable.
The Impact on Participation and Autonomy Questionnaire (IPAQ) measure participation as
defined in the International Classification of Functioning, Disability and Health (ICF) (Cardol et
al. 1999;Cardol et al. 2001;World Health Org 2001). The scale has 31 items covering 6 of the 9
Participation domains of the ICF. In addition, 8 items probe problem experience. More recently,
the Assessment of Life Habits (LIFE-H) was developed (Noreau et al. 2002). The LIFE-H exists
in a short and a long form, containing 77 items and 240 items, respectively. The response
scales assess level of accomplishment, level of assistance and level of satisfaction. The validity
and other psychometric properties of the above handicap and participation scales generally
have been well established.
Items commonly used in the above instruments
Many areas of life may be affected by stigma. In the terminology of the new WHO International
Classification of Functioning, Disability and Health (ICF), the consequences of stigma would
manifest to a large extent as participation restrictions (World Health Organisation 2001). The
ICF recognises nine life domains in which participation may be restricted (World Health
Organisation 2001). These are learning and applying knowledge, general tasks and demands,
communication, mobility, self care, domestic life, interpersonal interactions and relationships,
major life areas and community, social and civic life. Other aspects of life affected by stigma are
well-being or quality of life, self-esteem and emotions.
Table 3 list the attitude, discrimination, self-esteem, perceived stigma and other stigma items
used in three or more of the public health fields included in this review. They have been
grouped according to the ICF domains where possible or otherwise in appropriate other
categories. Items related to particular issues often were formulated in several different ways.
These include questions or statements, actual experience or perceived stigma, community
perspective or the perspective of the affected person. However, underneath these differences,
the similarities are striking. As many as 35 items have been used in 3 or more public health
fields to assess stigma or related constructs. Among the top 16, occurring in at least 4 fields,
are items related to marital problems, social avoidance, concealment of the condition, shame
and embarrassment, thinking less of oneself, visiting or being visited by others, family members
having problems to get married, not being allowed to play with children, reduced employment
opportunities, people thinking less of the affected person and fear of the person with the
condition.

Discussion
In conditions like leprosy, HIV/AIDS and schizophrenia, the consequences of the stigma
attached to the condition may be worse than the condition itself. While the presence of stigma is
often well recognised, the magnitude or intensity of such stigma, and the often resulting
discrimination, is difficult to quantify. The question, How strong is the stigma against HIV/AIDS
or leprosy in this community? is likely to be answered with vague statements, such as very
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strong, not so strong or less strong than before. Because of the strong negative impact of
stigma on public health, a lot of resources are invested in stigma reduction. It is therefore very
important to be able to assess the impact of such interventions.
Despite enormous cultural diversity, the areas of life affected by stigma are remarkably similar in
different countries and health conditions. They include marriage, interpersonal relationships,
mobility, employment, access to treatment and care, education, leisure activities and
attendance at social and religious functions. This similarity suggests that it may be possible to
develop a set transcultural generic instruments to assess the intensity of stigma and
discrimination related to a condition like leprosy in a given community.
Stigma has many components. Stigmatising attitudes in a community play a major role, but are
not the only source of stigma. Other important sources are the media, health and social
services, the educational system and legislation. Therefore, a comprehensive assessment will
need a combination of quantitative and qualitative approaches including an assessment of the
attitudes and practices of members of the community, an audit of the media, the (health)
services provided, information contained in educational materials and legislation. Stigma should
be assessed from the community perspective as well as the perspective of the affected persons
and their family. The latter should include an assessment of perceived stigma and of the impact
of stigma of social participation, quality of life, health seeking behaviour and, if relevant,
treatment adherence.
Public attitudes
The analysis of items in attitude scales developed in the various areas of public health suggests
that a generic scale would be feasible. Results of studies that have used the stigma scale
derived from the EMIC, as well as the performance of several generic handicap and
participation scales support this hypothesis. The most promising instruments include the stigma
scale derived from the EMIC (Weiss et al. 1992), the questionnaire used for impact assessment
of media campaigns in Nepal (van Brakel 1997), the AAS-G (Froman & Owen 2001), the
Siyamkela indicator set, the indicator set currently field-tested in Tanzania (see Table 2), the
CAMI (Taylor & Dear 1981), the Attribution Questionnaire (Corrigan et al. 2004) and the scales
developed by Angermeyer and Matschinger (1996;2003). A stigma scale and other interviewbased instruments would assess reported attitudes and practices, which are not necessarily an
accurate reflection of the real situation. They therefore should be complemented and validated
with the help of qualitative methods, such as key informant interviews, focus group discussions
and in-depth interviews with people affected.
Actual discrimination
Far fewer examples are available of instruments developed to measure actual discrimination.
Link et al. noted this as a gap in stigma research in mental health (2004, in press). The one
instrument specifically developed for this purpose is Protocol for identification of discrimination
against PLWH developed by UNAIDS (2000). The indicator sets developed by the Policy
Project (see HIV/AIDS section above) also contain items specifically querying discrimination
experience. These instruments are currently being field-tested and reports of results are not yet
available. The Participation Scale (van Brakel, submitted) and other measures of handicap and
participation also contain many relevant items on discrimination experience (see Table 2). Since
reducing discrimination is the target of many interventions, information on actual discrimination
is crucial for evaluation of the impact of measures such as media campaigns, legislation, etc.
Such information would also allow an assessment of the extent in which reported stigma is
perceived or based on actual experience.
Perceived stigma
Perceived stigma may affect the lives of the people concerned in same way as enacted stigma.
It also may cause the same negative effects on public health programmes as enacted stigma.
Accurate assessment of perceived stigma, both at the individual and group level, is an essential
component of stigma measurement. The most promising instruments are the HIV Stigma Scale
(Berger et al. 2001), the Internalised Stigma of Mental Illness scale (Ritsher et al. 2003), the
scale developed by Jacoby (Jacoby et al. 1993) and the children and parents scales developed
by Austin et al. (Austin et al. 2004).
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The impact of stigma on the person affected

Stigma affects people psychologically. It often lowers self-esteem and can cause or aggravate
psychiatric morbidity. Both enacted and perceived stigma restrict social participation in a wide
range of areas. Ultimately, stigma reduction efforts must mitigate these negative effects.
Measurement of self-esteem, depression and social participation are therefore highly relevant to
monitor the impact of stigma reduction interventions. Many instruments have included items or
sub-scales measuring these effects. The best-validated instruments are the Participation Scale
(van Brakel et al., submitted), the Syamkela indicator set, the Self-Efficacy Scale (Tedman et al.
1995), the QOLIE-AD-48 (Cramer et al. 1999), the CATIS (Austin & Huberty 1993), the Impact on
Participation and Autonomy Questionnaire (Cardol et al. 1999), the Assessment of Life Habits
(Noreau et al. 2002) and the CHART (Whiteneck et al. 1992).
Stigmatising arrangements in health and social services
Stigma and discrimination occurring in health and social services are particularly harmful for
public health programmes dealing with stigmatised conditions. They are a major problem for
people affected by mental illness, HIV/AIDS and leprosy and need to be addressed as a matter
of priority and therefore should be part of stigma assessment. No specific instruments
assessing this type of stigma were found, but relevant items are included in the UNAIDS
protocol on measuring discrimination (2000) and the Policy Project indicator sets.
Stigmatising descriptions or images in media and educational materials
The images portrayed in the media and in educational materials potentially play a powerful role
in perpetuating or mitigating stigma. They can serve as an indicator of changing attitudes
towards people with stigmatised conditions and are themselves powerful change agents. An
audit of such materials therefore would be an important part of stigma assessment. However,
we could not find any instruments developed for this purpose. A few relevant items are included
in the UNAIDS protocol.
Purpose of stigma assessment
The data collected with such instruments would be very useful for a number of purposes.
1. Understanding the situation of people affected by a given condition in a particular area or
country, as part of a situational analysis in preparation for a public health programme.
2. Monitoring and evaluation of the impact of interventions to reduce stigma in the community.
The efficacy of different strategies and interventions could be compared.
3. Evaluating the cost-effectiveness of various interventions to reduce stigma or to mitigate the
impact of stigma.
4. Providing data for advocacy work. Data on stigma would strengthen the case of people
involved in advocacy on behalf of those stigmatised. Such data would awaken the interest
of the public to the plight of those affected by the stigma.
5. Research. Reliable generic instruments to measure stigma in a comprehensive way would
enable further research to increase our understanding of the dynamics and causes of
stigma, with the purpose of designing more effective stigma reduction interventions.
Comparing stigma intensity between different people groups and communities would help
us discover factors that have helped some to overcome stigma or factors that increase the
risk of stigmatisation in others.

Conclusions
1. The consequences of stigma are far-reaching, affecting the quality of life of countless
individuals, as well as the effectiveness of many public health programmes.
2. Many instruments have been developed to assess the intensity and qualities of stigma
attached to leprosy, mental illness, epilepsy, disability and HIV/AIDS, but often these have
been condition-specific.
3. The similarity in the consequences of stigma in many different cultural settings and the
crosscutting applicability of many items from stigma instruments suggest that it would be
possible to develop a generic set of stigma assessment instruments.
4. To achieve this aim, existing instruments should be further developed, avoiding duplication
and building on and collaborating with other current projects with similar aims.
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Vlassoff, C., Weiss, M., Ovuga, E. B., Eneanya, C., Nwel, P. T., Babalola, S. S., Awedoba, A. K., Theophilus, B., Cofie,
P., & Shetabi, P. 2000, "Gender and the stigma of onchocercal skin disease in Africa", Soc.Sci.Med., vol. 50, no. 10, pp.
1353-1368.
Wahl, L. M. & Nowak, M. A. 2000, "Adherence and drug resistance: predictions for therapy outcome", Proc.R Soc Lond
B Biol.Sci., vol. 267, no. 1445, pp. 835-843.
Walker, N., Mellick, D., Brooks, C. A., & Whiteneck, G. G. 2003, "Measuring participation across impairment groups
using the Craig Handicap Assessment Reporting Technique", Am.J.Phys.Med.Rehabil., vol. 82, no. 12, pp. 936-941.
Weiner, B., Perry, R. P., & Magnusson, J. 1988, "An attributional analysis of reactions to stigmas", J Pers.Soc Psychol.,
vol. 55, no. 5, pp. 738-748.
Weiser, S., Wolfe, W., Bangsberg, D., Thior, I., Gilbert, P., Makhema, J., Kebaabetswe, P., Dickenson, D., Mompati, K.,
Essex, M., & Marlink, R. 2003, "Barriers to antiretroviral adherence for patients living with HIV infection and AIDS in
Botswana", J.Acquir.Immune.Defic.Syndr., vol. 34, no. 3, pp. 281-288.
Weiss, M. G., Auer, C., Somma, D., Abouihia, A., Jawahar, M. S., Karim, F., Arias, N. L., & Kemp, J. 2004, Gender and
tuberculosis: Cross-site analysis and implications of a multi-country study in Bangladesh, India, Malawi, and Colombia
4.
Weiss, M. G., Doongaji, D. R., Siddhartha, S., Wypij, D., Pathare, S., Bhatawdekar, M., Bhave, A., Sheth, A., &
Fernandes, R. 1992, "The Explanatory Model Interview Catalogue (EMIC). Contribution to cross-cultural research
methods from a study of leprosy and mental health", Br.J.Psychiatry, vol. 160, pp. 819-830.
Weiss, M. G. & Ramakrishna, J. 2001, Stigma Interventions and Research for International Health.
Westbrook, L. E., Bauman, L. J., & Shinnar, S. 1992, "Applying stigma theory to epilepsy: a test of a conceptual model",
J.Pediatr.Psychol., vol. 17, no. 5, pp. 633-649.
Whiteneck, G. G., Charlifue, S. W., Gerhart, K. A., Overholser, J. D., & Richardson, G. N. 1992, "Quantifying handicap:
a new measure of long-term rehabilitation outcomes", Arch.Phys.Med.Rehabil., vol. 73, pp. 519-526.
WHO 1980, International Classification of Impairments, Disabilities and Handicaps World Health Organisation, Geneva.
World Health Org 2001, International Classification of Functioning, Disability and Health (ICF) WHO, Geneva.
World Health Organisation 2001, International Classification of Functioning, Disability and Health (ICF) WHO, Geneva.

Measuring health-related stigma vs2.doc

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Table 1: Comparison of the effects of stigma on individuals, community and public health programmes and interventions in different fields of public health.
Effect on the individual and/or community
Emotional stress and anxiety
Problems in marriage or in getting married
Problems in friendships and social relationships
Problem with employment or in getting a job
Reduced educational opportunities
Increased inequities between those affected and those
who are not
Concealment of the disease after diagnosis
Poor(er) prognosis
Other participation restrictions (e.g. economic
dependency, denied access to loans and credit, etc.)
Isolation
(Increased) psychological and psychiatric morbidity
Lack of motivation to continue treatment, or
Motivation to continue treatment
Increased disability
Increased gender differences
Empowerment, e.g. positive self image and confidence
developed in resistance to discrimination
Effect on public health programmes and
interventions
Delay in presentation for treatment
Poorer treatment prognosis; more complicated and
more expensive treatment
Continued transmission
Failure of prevention
Poor adherence and default
Risk of drug resistance
Increased burden on the health services
Poor image of the public health programme
Measuring health-related stigma vs2.doc

Leprosy

HIV/AIDS

TB

X
X
X
X
X
X

X
X
X
X
X
X

X
X
X

X
X
X

X
X
X
X
X
X
X

X
X
X
X
X
X

X
X

X
X

X
X

X
X
X
X
X
X

X
X
X
X

Mental
illness
X
X
X
X
X
X

Epilepsy

Disability

X
X
X
X
X
X

X
X
X
X
X
X

X
X

X
X
X

X
X

X
X
X
X
X
X

X
X

X
X

X
X

X
X

X
X
X
X
18

X
X

X
X

X
X

14 September 2005

Buruli
ulcer
X
X
X

Oncho
cerciasis
X
X
X
X

X
X
X

Table 2: Overview of instruments to assess stigma or stigma-related concepts in different fields of public health, arranged in order of publication.
Country
Generic
India

USA
Nepal, India
and Brazil
Leprosy
India
MalaysiaSarawak
Nigeria
Ethiopia
Myanmar
USA
India
India

Authors and year

Type of instrument (name) and target

population

No. of
items*

Response scale

Psychometric properties
tested

No. of subjects

(Brieger et al.
1998;Raguram et al.
1996;Raguram et al.
2004;Stienstra et al.
2002;Vlassoff et al.
2000;Weiss et al.
1992)
(Austin & Huberty
1993;Heimlich et al.
2000)
van Brakel et al.,
2004
(submitted to SS&M)

Scale (Explanatory Model Interview

Catalogue (EMIC)) people affected by
stigmatised conditions
Adaptations of the stigma scale of the
EMIC have been used in different
studies.

6, 13,
19

Yes/Possibly or
uncertain/No

Validity (convergent), internal

consistency, reliability

56 leprosy
19 vitiligo
12 controls (tinea versicolor)

Scale (Child Attitude Toward Illness

Scale (CATIS)) children with chronic
disease
Scale (Participation Scale) people
affected by leprosy, disability or other
stigmatised conditions

13

5-point very good-very

bad or very often-never
scale
Yes / Sometimes / No,
followed 4-point severity
scale

Validity (convergent,
divergent, construct), internal
consistency, reliability
Validity (content, criterion,
convergent, construct),
internal consistency,
reliability, stability, dynamicity

136 children 8-12 with epilepsy

133 children with asthma
197 adolescents with epilepsy
Phase II: 691
Phase III: 683
Mixed leprosy, other disability
and controls

(Ramu et al. 1975)

Questionnaire general public

Yes/No/Dont know

(Chen 1986)

List of statements general public

12

(Awofeso 1992)
(Tekle-Haimanot et al.
1992)
(Myint et al. 1992)

Questionnaire nurses
Questionnaire people affected by
leprosy
Questionnaire people affected by
leprosy and general public
Questionnaire professionals

5
8

Approve / disapprove of
given statements
5-point agreement scale
Yes/No/Dont know

4-point agreement scale

Yes/No/Dont know

Questionnaire general public

Scale (Dehabilitation scale) people

affected by leprosy

52

3-point scale (positive,

neutral, negative)
5-point agreement
scales

(Booth & Ashbridge

1993)
(Raju & Kopparty
1995)
(Anandaraj 1995)

Measuring health-related stigma vs2.doc

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19

Validity (content, construct),

internal consistency

14 September 2005

25 normal individuals in rural

south India
388 community of different
ethnic background
278 nurses
1313 leprosy,
1257 epilepsy
251 leprosy
251 community
149 non-professional;
55 professional
599 Orissa,
600 Andhra Pradesh
???

Country

Authors and year

Nepal

van Brakel et al.,

1996a

India

(Gopal 1998)

Tanzania
Bangladesh

(van den Broek et al.

1998)
(Croft & Croft 1999)

Nepal

(de Stigter et al. 2000)

Semi-structured interview general

public

India

(Sharma et al. 2001)

3-option scales

36 Panchayat reps
16 leprosy in Madhya Pradesh

India

(Arole et al. 2002)

Questionnaire, as well as qualitative

methods people affected by leprosy
and general public
Questionnaire, open-ended questions
and other qualitative methods

18

Yes/No

Guyana

(Briden & Maguire

2003)

Questionnaire health care staff

2-4-item response
scales

25 leprosy
FGD with family members
PRA with community
185 non-leprosy

(Blumenfield et al.
1987)
(Shrum et al. 1989)

Questionnaire nurses

10

True / False

Scale (AIDS Attitudes Scale (AAS))

college students
Scale (AIDS Attitude Scale (AAS))
nurses and other health care personnel
Scale (Attitude Towards Volunteer
Motivation) volunteers working with
PLWHA
Scale (Nursing Willingness

54

HIV/AIDS
USA
USA
USA
USA

(1992;Froman &
Owen 1997)
(Schondel et al. 1992)

USA

(Dubbert et al. 1994)

Type of instrument (name) and target

population
Questionnaire general public

No. of
items*
8

Questionnaire people affected by

leprosy
Checklist with open questions
general public
Questionnaire general public

14
5
4

Response scale
Yes/No/Dont know or
multiple answer
categories
Yes/No

Psychometric properties
tested

Open questions with

checklist
Yes/No/Dont know
4 categories: usual behaviour,
eating limitations, individual
negative behaviour, socialpublic limitations, segregation

21

6-point agreement scale

55

5-point agreement scale

13

11-point willingness

Validity (content, construct),

internal consistency
Validity (content, construct),
internal consistency, stability
Validity (content, convergent,
construct), internal
consistency, discrimination
Validity (content, construct,

No. of subjects
534 community before
campaign
534 community after
53,000 people affected by
leprosy
1064 school children,
344 general public
50 cases
50 controls
192 community

107 nurses
191 nurses
164 phase I
135 phase II
167 nurses
150 youth services volunteers
247 AIDS volunteer
organisation
571 nurses

van Brakel WH, Bhatta I, Anderson AM, Engelbrektsson U. Preliminary results from a Leprosy Elimination Campaign conducted in Parwat District, West Nepal. Paper presented at the 2nd
international conference on the elimination of leprosy, New Delhi, India, 11-13 October 1996.

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14 September 2005

Country

Authors and year

USA

(Harrison et al. 1994)

Brazil

(Moriya et al. 1994)

USA

(Mulford & Lee 1996)

(UNAIDS 2000)

USA

(Berger et al. 2001)

USA

(O'Hea et al. 2001)

USA

(Froman & Owen

2001)

South Africa

(Siyam'kela 2003)

USA /
Tanzania

UNAIDS/ICRW/Policy
Project/Synergy
Project/MUCHS3
Skevington &
OConnell

UK?
Tuberculosis
Vietnam
3

(Johansson et al.

Type of instrument (name) and target

population
Questionnaire) nurses

No. of
items*

Response scale

Scale (AIDS Attitude and Conservative

Views Scale) nurses
Scale (Attitudes towards AIDS)
general public

14

5-point willingness or
agreement scale

Scale (AIDS victim blaming scale)

general public
Protocol / indicator (Protocol for
identification of discrimination against
PLWH) different aspects of society
Scale (HIV Stigma Scale) PLWHA

25

scale

17

5-point agreement scale

37
40

3-category response
scales (multiple options
possible)
4-point agreement scale

Scale (Attitudes towards women with

HIV/AIDS scale (ATWAS)) general
public
Scale (AIDS Attitude Scale (AAS-G))
general public

27

5-point agreement scale

21

4-point agreement scale

Indicator set (Siyamkela HIV/AIDS

stigma indicators) PLWHA and
general public
Indicator set PLWHA and general
public

41

Number of people doing

or not doing something

Scale (WHO-QOL-HIV) - PLWHA

33

Qualitative methods people with and

Psychometric properties
tested
convergent, divergent),
internal consistency, stability
Validity (content, construct),
internal consistency
Validity (content, construct),
internal consistency,
discrimination
Validity (construct,
convergent)

Validity (content, convergent,

construct), internal
consistency, reliability
(stability)
Validity (content, convergent,
construct), internal
consistency
Validity (content, construct),
internal consistency, stability,
reliability

No. of subjects

225 nurses

824 students

318 PLWHA of different ethnic

background
225 students
160 community members
96 community members
62 community members
205 in FGD (43% PLWHA)
32 in-depth interviews

Validity (content, construct),

internal consistency

978 community members

200 PLWHA
100 health care providers
900 HIV-positive and well
respondents

N.A.

16 focus group discussions

MUCHS = Muhimibili University College of the Health Sciences; part of an ongoing stigma indicator field-testing project in Tanzania

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Country

Authors and year

Nicaragua

2000)
Macq 2004 (paper
submitted)

Mental
Health
USA
Canada
Germany

(Cohen & Struening

1962;Struening &
Cohen 1963)
(Taylor & Dear 1981)

USA

(Angermeyer &
Matschinger 1996)
(Ritsher et al. 2003)

USA

Corrigan

USA

(Corrigan et al.
2001a)

USA

(Corrigan et al.
2001b;Weiner et al.
1988)
(Angermeyer &
Matschinger 2003)

Germany

Type of instrument (name) and target

population
without tuberculosis
Scale people affected by tuberculosis

No. of
items*

Response scale

Psychometric properties
tested

No. of subjects

35

4-point agreement scale

Under development

82 people affected by
tuberculosis

Scale (Opinions about Mental Illness

(OMI)) general population

51

Validity (construct), internal

consistency

1194 hospital staff

Scale (Community Attitudes to Mental

Illness (CAMI)) general population

40

Scale (Emotional Reaction to Mental

Illness Scale) general population
Scale (Internalised Stigma of Mental
Illness (ISMI)) people with mental
illness
Scale (Family Stigma Questionnaire
(FSQ)) family members of persons
with mental illness
Scale (General Attribution
Questionnaire (G-AQ-20)) general
public
Scale (Psychiatric Disability Attribution
Questionnaire (PDAQ)) general public

12

5-point scale

29

4-point agreement scale

321 students
54 community members
1090 community households
2 surveys of community
members
127 mental health outpatients

7-point agreement scale

using vignettes

Validity (content, convergent,

construct), internal
consistency, discrimination
Validity (content, construct),
internal consistency, reliability
Validity (content, convergent,
divergent, construct), internal
consistency, reliability

20

9-point opinion scale

36 (6
conditio
ns)
8+9+
7

7-point agreement scale

Validity (content, convergent,
divergent, construct), internal
consistency, reliability

5025 general population

Validity (convergent,

445 older adolescents and

Scale general public

USA

(Corrigan et al. 2004)

Epilepsy
USA

Scale (Attribution Questionnaire 27 or

Attribution Questionnaire-Short Form)
general public

27
(8 Short
Form)

(Ryan et al. 1980)

Scale people with epilepsy

21

Measuring health-related stigma vs2.doc

5-point, 9-point and 5point scales indicating

degree of trueness and
certainty
9-point opinion scale
using vignettes

22

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850 family members

Country

Authors and year

Type of instrument (name) and target

population

No. of
items*

Response scale

USA

Scale adolescents with epilepsy

UK

(Westbrook et al.
1992)
(Jacoby et al. 1993)

Scale people with epilepsy

UK

(Jacoby 1994)

Scale people with epilepsy

UK

(Tedman et al. 1995)

Scale Self-Efficacy Scale adults with

epilepsy

12

Often/sometimes/rarely/
never
4-point scale (a lot,
some, a little, not at all)
2-option agreement
scale
5-point agreement scale

Pakistan
USA

(Aziz et al. 1997)

(Cramer et al. 1999)

Questionnaire people with epilepsy

Scale (QOLIE-AD-48) people with
epilepsy

12
10

Yes/No

USA
USA

(Austin et al. 2002)

(Austin et al. 2004)

Questionnaire adolescents
Scale (Child scale) children with
epilepsy
Scale (Parent scale) parents of
children with epilepsy

5
9

5-point agreement scale

5-point frequency scale

5-point agreement scale

Scale (Perceived Handicap

Questionnaire (PHQ)) people with
disability
Scale (London Handicap Scale (LHS))
people with disability
Scale (Impact on Participation and
Autonomy Questionnaire (IPAQ))
people with disability
Scale (Assessment of Life Habits
(LIFE-H)) people with disability

Scale (Craig Handicap Assessment

Disability
USA

(Tate et al. 1994)

UK

(Harwood et al. 1994)

Netherlands

(Cardol et al. 1999)

Canada

(Noreau et al.
2002;Noreau et al.
2004)

USA

(Walker et al.

Measuring health-related stigma vs2.doc

Psychometric properties
tested
divergent, construct)
Validity (convergent), internal
consistency
Validity (content, construct),
internal consistency
Validity (convergent), internal
consistency
Validity (content, face,
convergent, divergent,
construct), internal
consistency, reliability
Validity (content, convergent,
construct), internal
consistency, reliability
Validity (convergent,
divergent, construct), internal
consistency

No. of subjects
adults with epilepsy
64 adolescents
75 adults with epilepsy
696 adults with epilepsy
607 adults with epilepsy
52 adults with epilepsy
48 controls
241 people with epilepsy
197 adolescents
19,441 high school students
171 Chronic sample
171 Chronic sample
210 New-onset sample
163 spinal cord injury patients

6 levels of severity

31

5-point quality scale

(excellent very poor)

69 or
240

10-point severity scale

32 long

Different scales; actual

23

Validity (content, convergent,

divergent), reliability
Validity (content, convergent,
construct), internal
consistency, reliability
Validity (content, convergent,
divergent), internal
consistency intra and intertester reliability
Validity (content, convergent),

14 September 2005

89 stroke patients
126 adults with disability
49 children and adults with
spinal cord injury
482 spinal cord injury patients
135 spinal cord injury patients

Country

Skin disease
USA

Authors and year

2003;Whiteneck et al.
1992)
(Neil 2001)

Type of instrument (name) and target

population
Reporting Technique (CHART))
people with disability

No. of
items*
form; 19
short

Response scale

Scale (the Stigma Scale) general

population

11

5-point agreement scale

time spent, actual

financial resources

Psychometric properties
tested
reliability

No. of subjects

Validity (content, construct),

internal consistency, reliability

150 community

* Only items measuring attitude and/or practice have been counted here

Measuring health-related stigma vs2.doc

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14 September 2005

1110 people with disability

Table 3: Commonly used stigma instrument items grouped according to ICF domains
Domain*

Item

Mental Epilepsy HIV/AIDS Leprosy TB Buruli Onchocer Disab Generic Fields

health
ulcer ciasis
**

Interpersonal interactions and Problems in / quality of an ongoing marriage / problems with spouse
relationships
or partner

II

II

IIII

II

Interpersonal interactions and Affected people are concealing the condition / keep it a secret
relationships

II

IIII

II

IIII

Interpersonal interactions and People avoid someone with this condition / distance themselves
relationships
socially

III

III

II

Interpersonal interactions and Problems for the affected person to get married
relationships

III

Interpersonal interactions and Is the person with the condition treated with respect by family,
relationships
community members, health workers

IIII

Interpersonal interactions and Allowed to or problems to play with / be around / look after children
relationships

II

IIII

III

II

Interpersonal interactions and Do friends avoid you / is your relationship with your friends affected
relationships
negatively?
Interpersonal interactions and Problems for the children or relative of the affected person to get
relationships
married

I
I
I

Interpersonal interactions and It is easier to avoid new friendships than worry about telling someone
that I have this condition
relationships

II

Major life areas

Major life areas
Major life areas
Major life areas

Do you have an equal opportunity as your peers to find work?

Loosing work or diminished employment prospects
Working with / employing an affected person
Are you able to work as hard as your peers do/has your ability to
work been affected by your condition?

Measuring health-related stigma vs2.doc

25

I
I
I
II

14 September 2005

I
IIII

4
I

3
3

I
I

II
III
IIIII
I

II

I
II

II

Interpersonal interactions and Negative attitude of relatives / abandoned by family

relationships
Interpersonal interactions and Does the opinion of the affected person count in (family) discussions
relationships

II

3
3

I
I
III

5
4
3
3

Mental Epilepsy HIV/AIDS Leprosy TB Buruli Onchocer Disab Generic Fields

ulcer ciasis
**
health

Domain*

Item

Major life areas

Community, social and civic
life
Community, social and civic
life
Community, social and civic
life
Community, social and civic
life

Has your condition affected your educational plans or opportunities?

Visiting or being invited by friends, family and/or others

I
I

Being socially active

Domestic life
Domestic life
Self-esteem / self-efficacy

Does the affected person do household work (the way they want)
Having equal opportunity to buy or rent accommodation
Im not as good a person as others because of my condition / think
less of yourself

Self-esteem / self-efficacy
Self-esteem / self-efficacy
Self-esteem / self-efficacy

Others would think less of the person because of his/her condition

Having this condition has spoiled my life
I'm a person of worth; I can have a good, fulfilling life, despite my
condition

II
I
I

Self-esteem / self-efficacy

I feel comfortable being seen in public with a person who has / is

known to have this condition

Attending social / community functions and/or meetings

II

Anyone with (a history of) this condition should be excluded from

taking public office / difficult to function as a leader

Fear of contagion or of being Being afraid of (persons with) this condition

affected

I
I

Fear of contagion or of being An affected person should be isolated / live separately

affected

III

Shame / embarassment
Blame / guilt
Pity
Perceived stigma

II

26

3
5

II

IIIIII

II

Is the condition associated with shame or embarrassment

I feel guilty because I have this condition
People feel sorry for a person with this condition / Others pity you
Others would think less of the family

IIIII

I
III

Fear of contagion or of being Being afraid you or other may catch the condition from an affected
affected
person

Measuring health-related stigma vs2.doc

I
II

I
I

I
I

I
I

II

I
I

I
I

14 September 2005

3
3
3
5

II
I

I
I
I

II

II

II

I
I

4
3
3

4
I

II

IIIII

I
III

II
I

3
3

II

I
I

II
I

I
I

7
3
4
3

Domain*

Item

Stereotyping

It is possible/easy to tell if a person has this condition

Mental Epilepsy HIV/AIDS Leprosy TB Buruli Onchocer Disab Generic Fields

ulcer ciasis
**
health
II

* Domains of the ICF or stigma components

** Number of public health fields that have included an item of this type in one or more instruments

Measuring health-related stigma vs2.doc

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14 September 2005