Experiences of mental illness stigma, prejudice and discrimination: a review of measures

  • Elaine Brohan1Email author,

    Affiliated with

    • Mike Slade1,

      Affiliated with

      • Sarah Clement1 and

        Affiliated with

        • Graham Thornicroft1

          Affiliated with

          BMC Health Services Research201010:80

          DOI: 10.1186/1472-6963-10-80

          Received: 24 September 2009

          Accepted: 25 March 2010

          Published: 25 March 2010

          Abstract

          Background

          There has been a substantial increase in research on mental illness related stigma over the past 10 years, with many measures in use. This study aims to review current practice in the survey measurement of mental illness stigma, prejudice and discrimination experienced by people who have personal experience of mental illness. We will identify measures used, their characteristics and psychometric properties.

          Method

          A narrative literature review of survey measures of mental illness stigma was conducted. The databases Medline, PsychInfo and the British Nursing Index were searched for the period 1990-2009.

          Results

          57 studies were included in the review. 14 survey measures of mental illness stigma were identified. Seven of the located measures addressed aspects of perceived stigma, 10 aspects of experienced stigma and 5 aspects of self-stigma. Of the identified studies, 79% used one of the measures of perceived stigma, 46% one of the measures of experienced stigma and 33% one of the measures of self-stigma. All measures presented some information on psychometric properties.

          Conclusions

          The review was structured by considering perceived, experienced and self stigma as separate but related constructs. It provides a resource to aid researchers in selecting the measure of mental illness stigma which is most appropriate to their purpose.

          Background

          Defining stigma

          The classic starting point for defining the stigma of mental illness is Goffman's 'an attribute that is deeply discrediting'. The recognition of this attribute leads the stigmatised person to be 'reduced... from a whole and usual person to a tainted or discounted one' p.3 [1]. This presents stigma as the relationship between attribute and stereotype. In Goffman's terms, attributes can be categorised in three main groups: 1) abominations of the body e.g. physical disability or visible deformity, 2) blemishes of individual character e.g. mental illness, criminal conviction or 3) tribal stigmas e.g. race, gender, age.

          The work of Jones and colleagues built on these categorisations with a focus on the study of 'marked relationships' [2]. In this definition, stigma occurs when the mark links the identified person via attributional processes to undesirable characteristics which discredit him or her. They propose six dimensions of stigma:
          1. 1.

            Concealability: how obvious or detectable a characteristic is to others

             
          2. 2.

            Course: whether the difference is life-long or reversible over time

             
          3. 3.

            Disruptiveness: the impact of the difference on interpersonal relationships

             
          4. 4.

            Aesthetics: whether the difference elicits a reaction of disgust or is perceived as unattractive

             
          5. 5.

            Origin: the causes of the difference, particularly whether the individual is perceived as responsible for this difference

             
          6. 6.

            Peril: the degree to which the difference induces feelings of threat or danger in others

             

          Elliott and colleagues emphasised the social interaction in stigma [3]. In their definition, stigma is a form of deviance that leads others to judge an individual as illegitimate for participation in a social interaction. This occurs because of a perception that they lack the skills or abilities to carry out such an interaction, and is also influenced by judgments about the dangerousness and unpredictability of the person. Once the person is considered illegitimate then they are beyond the rules of normal social behaviour and may be ignored or excluded by the group.

          There has been a substantial increase in research on mental illness related stigma over the past 10 years [4, 5]. Link and Phelan note that the stigma concept has received criticism for being too individually focused and loosely defined. In response to these criticisms, they define stigma as 'the co-occurrence of its components: labeling, stereotyping, separation, status loss, and discrimination' in a context in which power is exercised p.363 [6]. Phelan and colleagues have recently investigated the possible intersection of conceptual models of stigma and prejudice, and concluded that the two approaches have much in common with most differences being a matter of emphasis and focus. They argue that stigma and prejudice have three functions: exploitation and domination (keeping people down); disease avoidance (keeping people away) and norm enforcement (keeping people in)[7].

          Corrigan has proposed a framework in which stigma is categorised as either public stigma or self stigma. Within each of these two areas, stigma is further broken down into three elements: stereotypes, prejudice and discrimination [8]. This is revised in the definition of Thornicroft et al, 2007, in which stigma includes three elements: problems of knowledge (ignorance or misinformation), problems of attitudes (prejudice), and problems of behaviour (discrimination)[9]. Sayce advocates using a discrimination framework. Stigma is presented as an unhelpful concept which prevents focus on the unfair treatment experienced by mental health service users [10].

          The aim of the review is to report on survey measures assessing aspects of mental illness stigma, prejudice and discrimination reported by people personally affected by mental illness. It will review the characteristics and psychometric properties of the included measures and provide guidance regarding measures to be used in further research in the area.

          Measuring stigma

          An existing review considers the measurement of mental illness stigma from multiple perspectives including mental health service users, professional groups (e.g. mental health professionals or police), the general population, families or carers of those with a mental illness and children and adolescents [11]. The current review focuses only on measures appropriate to people with personal experience of mental illness and includes several measures which have been published since the previous review in 2004. It is timely to focus on measures of the personal stigma of mental illness as these are increasingly being used as key outcomes in anti-stigma interventions [12, 13]. This review will focus on the personal stigma, prejudice and discrimination associated with mental illness. For the sake of brevity, stigma will be used as an overarching term to include elements of stigma, prejudice and discrimination. In this review, the personal stigma of mental illness is considered in three main ways: perceived stigma, experienced stigma and self-stigma. Each of these aspects is defined below:

          1) Perceived stigma

          Van Brakel and colleagues provide a definition of perceived or felt stigma research as that in which 'people with a (potentially) stigmatized health condition are interviewed about stigma and discrimination they fear or perceive to be present in the community or society' [14]. In the original definition, felt stigma 'refers principally to the fear of enacted stigma, but also encompasses a feeling of shame associated with [the illness]' p.33 [15]. Felt stigma may be thought of as encompassing elements of both perceived and self stigma. For the purposes of this review, perceived stigma is consistent with the definition of Van Brakel and colleagues, and does not include feelings of shame, which are instead included under self-stigma.

          LeBel, highlights that perceived stigma can include both of the following [16]:
          1. a)

            what an individual thinks most people believe about the stigmatised group in general

             
          2. b)

            how the individual thinks society views him/her personally as a member of the stigmatised group

             

          For the purposes of this review, both of these elements are included as perceived stigma.

          2) Experienced stigma

          Van Brakel and colleagues' definition of experienced stigma as the 'experience of actual discrimination and/or participation restrictions on the part of the person affected' will be used in this review [14]. This is similar to Scrambler & Hopkins, (1986), concept of enacted stigma or 'instances of discrimination ...on the grounds of their perceived unacceptability or inferiority' p.33.

          3) Self-stigma

          Corrigan and Watson, use the term public stigma to describe the ways in which the general public stigmatise people with a mental illness [17]. They describe self-stigma as the internalisation of this public stigma. An extended definition describes it as 'the product of internalisation of shame, blame, hopelessness, guilt and fear of discrimination associated with mental illness' [18]. It has also been defined as a process, either conscious or unconscious, wherein the person with mental illness accepts diminished expectations both for and by him or herself [19]. Van Brakel et al, 2006, describe it as 'feelings of loss of self-esteem and dignity, fear, shame, guilt, etc' In this way, it is contains elements of felt stigma as described above [15].

          If self-stigma is considered as a reaction to public stigma, then it may be appropriate to also consider measures of other reactions to public stigma under this section e.g. energisation, righteous anger or no observable response [17]. The coping literature overlaps with this to a large degree, particularly with behavioural aspects of self-stigma such as disclosure or social withdrawal (See [20] for an overview of the coping literature and the Stigma Coping Orientation Scales [21, 22] for further information). For the puroposes of this review these additional measures of self-stigma were not considered. The focus was soley on those which were described as measuring personal stigma.

          Method

          A narrative literature review was conducted to identify survey measures of the three stigma constructs. Searching and data extraction was conducted by EB. The databases Medline, PsychInfo and the British Nursing Index were searched for published journal articles containing the title, abstract or keyword terms ('mental AND ill*' OR 'mental AND distress') AND ('stigma*' OR 'prejudic*'OR 'discriminat*') for the period 1990-2009. After removing duplicate papers, a total of 984 articles were identified. The titles and abstracts of these papers were reviewed. Papers were included if they reported on a survey measure of perceived, experienced or self-stigma which had been used with a sample of adults with a primary diagnosis of a mental illness. Only English language papers were included. As the aim was to identify measures of mental illness stigma, inclusion was not limited based on study design as long as a survey measure of mental illness stigma was used. 48 papers met these inclusion criteria. The reference lists of these papers and a personal database of stigma papers were reviewed for further papers. One systematic review of stigma and mental health was located and the reference list was checked [23]. The reference lists of 3 review papers on stigma and mental illness were also checked [6, 11, 24]. This resulted in the identification of a further 27 papers.

          Results

          From the 75 identified papers, 18 were excluded. Papers were excluded for 4 main reasons: 1) a measure of stigma was created especially for the study and insufficient information was presented on the content of the measure to include 2) the paper included only a measure of a closely related constructs e.g. stigma receptivity or a generic disability scale was used as a measure of stigma and 3) the study reported only on qualitative or experimental rather than survey based measures of stigma (see figure 1).
          http://static-content.springer.com/image/art%3A10.1186%2F1472-6963-10-80/MediaObjects/12913_2009_Article_1217_Fig1_HTML.jpg
          Figure 1

          Reasons for exclusion of papers from review.

          As seen in the above figure, 57 studies were identified in the review. In these studies, 14 measures of mental illness stigma were used. Further data on all located studies is provided in Additional File 1. All but one of the papers describing the development of these measures was included in the 57 identified papers. The paper not included was published in 1987, prior to the period for this review [25].

          Table 1 presents a summary of each measure. The subscales of each measure were categorised as measuring perceived, experienced or self-stigma using descriptions in the scale development papers. In cases where a subscale contained items which fell under more than one construct, the subscale was placed under the construct which represented the greatest number of items. Detail is provided on the scale structure and psychometric properties (where reported). The measures are ordered by the number of studies using the measures (final column). Table 2 presents a summary of the psychometric properties of each measure, as reported in the initial development paper. This table is a modified version of the format suggested by Terwee and colleagues for reporting on the measurement properties of health status questionnaires [26]. Terwee and colleagues highlight a framework of quality criteria for 9 aspects of psychometric assessment: content validity, internal consistency, criterion validity, construct validity, acceptability, reliability, responsiveness, floor and ceiling effects, and interpretability [26]. However, sufficient evidence was not present to use this framework consistently across the identified measures. Criterion validity or the extent to which scores relate to a gold standard was excluded due to the lack of a gold standard measure of stigma. Three additional properties based on minimal important change (acceptability, responsiveness and interpretability) were excluded as this information was not included for any located measures. Therefore Table 2 focuses on 5 properties: content validity, internal consistency, construct validity, test-retest reliability and floor or ceiling effects.
          Table 1

          Scales assessing stigma experienced by people with personal experience of mental illness

          Scale

          Measures

          Perceived stigma

          Measures

          experienced stigma

          Measures

          self-stigma

          Measures

          Other

          N. of studies found in review using measure

          1. Perceived Devaluation and Discrimination Scale (PDD) [25]

          Perceived discrimination

          (6 items)

          Perceived devaluation

          (6 items)

          No

          No

          No

          35

          [22, 28, 33, 35, 4470, 7076]

          Description

          12 item self complete measure. Each item is rated on a six-point Likert scale anchored at 1 = strongly disagree and 6 = strongly agree. The internal consistency of the scale ranges from α = 0.86 to α = 0.88 [22]

          2. Internalised Stigma of Mental Illness (ISMI) [33]

          No

          Discrimination experience

          (5 items)

          Alienation

          (6 items)

          Stereotype endorsement

          (7 items)

          Social withdrawal

          (6 items)

          Stigma resistance

          (5 items)

          7

          [48, 69, 7781]

          Description

          29 item self complete measure. Each item is rated on a four-point Likert scale anchored at 1 = strongly disagree and 4 = strongly agree. Internal consistency (α = 0.90), test-retest reliability(r = 0.92)

          3. Self-stigma of Mental Illness Scale (SSMIS) [27]

          Stereotype awareness

          (10 items)

          No

          Stereotype agreement

          (10 items)

          Stereotype self-concurrence

          (10 items)

          Self-esteem

          decrement

          (10 items)

          No

          5

          [73, 8285]

          Description

          40 item self complete measure. Each item is rated on a 9-point Likert scale anchored at 0 = strongly disagree and 9 = strongly agree). Internal consistency for subscales range α = 0.72 to α = 0.91. Test-retest reliability for subscales ranged from 0.68-0.82. The stereotype awareness items were adapted from the PDD [25]

          4. Consumer Experiences of Stigma Questionnaire (CESQ) [34]

          No

          Experiences of stigma (9 items)

          Experiences of discrimination

          (12 items)

          No

          No

          3

          [49, 86, 87]

          Description

          21 item self complete postal survey. Each item is rated on a five-point Likert scale anchored at 1 = never and 5 = very often. Has also been used as an interview. Psychometric properties not reported

          5. Rejection Experiences Scale (RES) [47]

          No

          Rejection experiences

          (11 items)

          No

          No

          3

          [52, 59, 72]

          Description

          11 item self-complete scale, develsoped in Swedish. Each item rated on a 5 point Likert scale anchored 1 = never and at 5 = very often. Internal consistency α = 0.85. The scale was developed based on the 6 items from the SRES [35] and 5 items from the CESQ [34]

          6. Depression Self-stigma Scale (DSSS)

          [30]

          Public stigma

          (4 items)

          Stigmatizing experiences

          (6 items)

          General self-stigma

          (9 items)

          Secrecy

          (9 items)

          Treatment stigma

          (4 items)

          1

          [88]

          Description

          32 item self-complete measure. Each item rated on a 7 point Likert scale anchored at 1 = completely agree and 7 = completely disagree. Internal consistency for subscales range α = 0.78- α = 0.95 [88]

          7. Self-reported Experiences of Rejection (SRER) [35]

          No

          Rejection experiences

          (12 items)

          No

          No

          1

          [56]

          Description

          12 item self-complete measure. 6 items about experiences related to mental illness and 6 about experiences related to drug use. Each item is scored using a yes/no response. Internal consistency is α = 0.80. A Link and colleagues recommend the use of the CESQ rather than SRER [11]

          8. Stigma Scale (SS)

          [36]

          No

          Discrimination (12 items)

          Disclosure

          (11 items)

          Positive aspects

          (5 items)

          0

          Description

          28 item self complete measure.

          Each item is rated on a four-point Likert scale anchored at 0 = strongly disagree and 4 = strongly agree. Test-retest reliability (kappa range 0.49-0.71) and internal consistency α = 0.87

          9. The Inventory of Stigmatising Experiences (ISE) [32]

          Perceived stigma

          2 items

          Experienced stigma

          2 items

          Social withdrawal

          1 item

          Impact of stigma (5 item)

          0

          Description

          10 item interview based measure with qualitative components. Each item is scored on a five point Likert Scale anchored at 1 = never and 5 = always. The scale is intended as a measure of 'the extent and impact of stigma'. Stigma experiences scale KR-20 = 0.83, stigma impact scale α = 0.91

          10. Self-esteem and Stigma Questionnaire (SESQ) [28]

          Feelings of stigmatisation

          (8 items)

          No

          No

          Self-esteem

          (6 items)

          0

          Description

          14 item self complete measure. The feelings of stigmatisation items are adapted from the PDD (Link, 1987). It also contains 5 self-esteem items which address the respondent's confidence in their ability to complete various tasks. A sixth self-esteem item is taken from the Rosenberg self-esteem scale [89]. All items are rated on a six point Likert scale, anchored at 1 = strongly agree and 6 = strongly disagree. Internal consistency α = 0.80. Item-total correlation r = 0.4 or greater for each item. Test retest stigma scale = 0.63, self-esteem scale (0.71). α = 0.79, 0.71

          11. Stigmatisation Scale (HSS) [49, 90]

          Perceived stigma

          (15 items)

          No

          No

          No

          0

          Description

          15 item self-complete measure. Adapted from 18-item measure by Harvey, 2001. Each item is rated on a 5 point Likert Scale anchored at 0 = never and 4 = always. Internal consistency α ≥ 0.80

          12. MacArthur Foundation Midlife Development in the United States (MIDUS) [37]

          No

          Major discrimination

          (11 items)

          Day to day discrimination

          (11 items)

          No

          No

          0

          Description

          22 item interview based measure. Each item was rated on a 5-point Likert scale anchored at 1 = all of the time and 5 = never. Assess discrimination for any reasons including disability, gender, ethnicity/race, age, religion, physical appearance, SES and other reasons. The disability category was further split into physical and mental disability. Dichotomous response for each question followed by a frequency scale anchored at 1 = often and 4 = never. Internal consistency α = 0.87

          13. Discrimination and Stigma Scale (DISC) [31]

          Anticipated discrimination

          (4-items)

          Experienced discrimination

          (32 items)

          No

          No

          0

          Description

          36 item interview based measure. All items are rated on a 7 point Likert scale anchored at -3 = strong disadvantage and 3 = strong advantage. Psychometric properties not reported

          14. Experiences of Discrimination Scale (EDS) [38]

          No

          Has discrimination occurred

          (1 item)

          Specific settings of discrimination

          (8 items)

          No

          Stressfulness of discrimination in specific settings

          (8 items)

          0

          Description

          Interview based measure which assesses experienced discrimination resulting from mental illness and other stigmatized identities. It asks whether discrimination has occurred, what the basis for this discrimination was, whether discrimination occurred in 8 specific settings and the level of stress associated with discrimination in each setting. Modified version of the Schedule of Racist Events Scale [91]

          Table 2

          Assessment of measurement properties of stigma measures

          Scale

          Content

          Validity1

          Internal

          Consistency2

          Construct

          Validity3

          Test-retest

          Reliability4

          Floor/

          ceiling effects5

          1. PDD [25]

          ?

          ?

          +

          0

          0

          2. ISMI [33]

          +

          +

          +

          +

          0

          3. SSMIS [27]

          +

          ?

          +

          +

          0

          4. CESQ [34]

          +

          0

          0

          0

          -

          5. RES [47]

          ?

          ?

          +

          0

          -

          6. DSSS [30]

          ?

          +

          +

          0

          0

          7. SRE [35]

          ?

          ?

          +

          0

          0

          8. SS [36]

          +

          +

          +

          +

          0

          9. ISE [32]

          +

          ?

          0

          0

          0

          10. SESQ [28]

          ?

          +

          +

          ?

          0

          11. HSS [49, 90]

          +

          ?

          +

          0

          0

          12. MIDUS [37]

          ?

          +

          +

          0

          -

          13. DISC [31]

          +

          0

          0

          0

          0

          14. EDS [38]

          ?

          0

          +

          0

          0

          + = positive rating of property, ? = indeterminate rating of property, - = negative rating of property, 0 = no information available for property

          For each property1-5 a positive rating of the property was made if the below criteria were met [26]

          1Clear description is provided of the measurement aim, the target population, the concepts that are being measured, and the item selection, target population and (investigators or experts) were involved in item selection

          2 Factor analysis performed on adequate sample size and Cronbach's alpha calculated per dimension and Cronbach's alpha between 0.70 and 0.95

          3Specific hypotheses were formulated and at least 75% of results are in accordance with the hypothesis

          4ICC or weighted Kappa ≥ 0.70

          5 ≤ 15% of respondents achieved the highest or lowest possible scores

          Measures of perceived stigma

          Seven identified measures assess aspects of perceived stigma (PDD, SSMIS, ISE, HSS, SESQ, DSSS and DISC). This is the most frequently addressed aspect of mental illness stigma with 45 (79%) of the identified studies using one of these measures. The PDD scale was most commonly used (82% of studies) [25]. Validated versions of this measure are available in German, Chinese and Swedish (See Additional File 1). It measures the individual's perception of how 'most other people' view individuals with a mental illness. Corrigan & Watson, 2002, refer to this construct as stereotype awareness. In their measure, the SSMIS, they adapt the PDD to create 10 items for inclusion as their 'stereotype awareness' subscale [27]. Similarly, the 'feelings of stigmatisation' subscale of the SSEQ is an adapted 8 item version of the PDD [28]. This construct is also known as stigma consciousness [29]. The 4 item 'public stigma' subscale of the DSSS also measures stereotype awareness [30].

          As mentioned, stereotype awareness is only one aspect of perceived stigma. Several of the other identified scales instead focus on personal expectations or fears of encountering stigma i.e. a personally relevant version of stereotype awareness. This is addressed in HSS, ISE & DISC. The HSS investigates perceptions of how the person feels they have been personally viewed or treated by society. The DISC contains 4 items which address anticipated discrimination, or the expectation of being stigmatised in various aspects of life [31]. In the 2 item perceived stigma subscale of the ISE, one of the items addresses stereotype awareness while the other addresses personal fear of encountering stigma [32].

          All of the measures reported on aspects of content validity. Several measures did not report on whether the target population had been involved in item selection (PDD, SESQ, DSSS) so were rated as partially fulfilling the criteria as this aspect was indeterminate. Two (DSSS, SESQ) met the full criteria for internal consistency. Four measures partially met the criteria, reporting adequate Cronbach's alpha but not reporting results of a factor analysis (PDD, SSMIS, ISE, HSS). DISC did not report on internal consistency. All measures except ISE and DISC reported adequate construct validity. Information on this property is not presented for these measures. Only the SSMIS and SESQ measured test-retest reliability, with the criteria reached in the SSMIS. The SESQ partially met the criterion (≥ 0.70) as the self-esteem subscale was slightly below the criterion at r = 0.063. Evidence on floor or ceiling effects was not located for any of the measures.

          Measures of experienced stigma

          Ten of the measures in Table 1 assess aspects of experienced stigma: ISMI, CESQ, RES, DSSS, SRE, SS, ISE, MIDUS, DISC and EDS. Twenty-six (46%) of the identified studies use one of these measures. In all scales, experienced stigma refers to either experiencing stigma in general or a report of experiences of stigma in specific areas of life.

          The 'discrimination experience' subscale of the ISMI contains 5 items which address both perceived and general experiences of discrimination [33]. This subscale was included under the category of experienced stigma as a greater number of the scale items address this construct. The CESQ 'discrimination' subscale asks about experiences of stigma in specific areas of life [34]. In Table 1, the CESQ 'stigma' subscale is also placed under the experienced stigma construct. This decision was taken as the majority of items refer to general stigma experiences. The RES is based on 6 items from the SRES [35] and 5 items from the CESQ [34]. The SRES was developed prior to the CESQ and the developers now recommend the use of the CESQ rather than the SRES [11]

          The 12 item 'discrimination' subscale of the SS asks about general stigma experiences e.g. 'have you been talked down to' and specific experiences e.g. in education [36]. Several items also address feelings about stigma. The ISE asks two general questions about experiences of stigma [32]. The DSSS 'stigma experiences' subscale contains 6 items which consider times in which the respondent may have felt stigmatised because of experiencing or disclosing depression [30]. The DISC contains 32 items which address experiences of stigma in various areas of life including work, family and mental health service use [31].

          Two of the identified measures (MIDUS, EDS) examined experienced stigma as well as multiple reasons for this stigma. Both ask about the perceived reason for poor treatment including characteristics such as mental illness, disability, gender, ethnicity/race, age, religion, physical appearance, socio-economic status and other reasons. The MIDUS contains 11 items which measure 'major discrimination' and 11 items which measure 'day to day' experiences of discrimination [37]. The EDS has 8 items which address specific areas in which stigma has been experienced [38].

          All of the measures reported on aspects of content validity. Four did not report on target population involvement in item selection (RSE, DSSS, SRE, EDS). Four (ISMI, DSSS, SS and MIDUS) met the full criteria for internal consistency. Three measures partially met the criteria, reporting adequate Cronbach's alpha but did not conduct a factor analysis (RES, SRE, ISE). CESQ, DISC and EDS did not report on internal consistency. All measures except CESQ, ISE, DISC reported on construct validity with adequate results. Only the ISMI and SS measured test-retest reliability, with both reaching the criterion level. Evidence on acceptable floor and ceiling effects were not available for any measures. Of those presenting information on this property (CESQ, RES and MIDUS) several items were seen to violate the criterion, receiving more than 15% of responses. Evidence on this property was not provided for other measures.

          Measures of self-stigma

          Five of the measures assessed aspects of self-stigma: ISMI, SSMIS, DSSS, SS and ISE. Nineteen (33%) of the studies used one of these measures. Self-stigma contains cognitive, affective and behavioural responses to perceived or experienced stigma. All three elements were reflected in the measures located.

          Three subscales of the ISMI particularly addressed self-stigma: alienation, stereotype endorsement and social withdrawal [33]. These can be considered affective, cognitive and behavioural dimensions respectively. The discrimination experience subscale was excluded as it was considered to measure experienced stigma. The stigma resistance subscale was also excluded. Three subscales of the SSMIS measure self-stigma: stereotype agreement, stereotype self-concurrence and self-esteem decrement [27]. The SS contains a 'disclosure' subscale which focuses on cognitive, affective and behavioural aspects of disclosure [36]. The ISE contains 1 item on social withdrawal [32]. Two subscales of the DSSS address self-stigma: general self-stigma and secrecy [30]. General self-stigma includes aspects of personally relevant stereotype awareness (as discussed under perceived stigma). Secrecy addresses a similar construct to the disclosure subscale of the SS, and the social withdrawal subscale of the ISMI.

          All of the measures reported on content validity. The DSSS did not report on target population involvement in item selection. Three scales (ISMI, DSSS, SS) met the full criteria for internal consistency. The SSMIS and ISE partially met the criteria, reporting adequate Cronbach's alpha but not conducting a factor analysis. All measures except ISE reported on construct validity to an adequate level. The ISMI, SSMIS and SS measured test-retest reliability, with all reaching the criterion level. Evidence on acceptable floor and ceiling effects were not available for any measures.

          Other subscales

          Several other subscales were identified in the review including 'stigma resistance' in the ISMI [33], 'positive aspects' in the SS [36], 'impact of stigma' in the ISE, [32], 'self-esteem' in the SESQ [28], 'treatment stigma' in the DSSS [30] and 'stressfulness of stigma events' in the EDS [38]. These subscales did not clearly fit into one of the three stigma constructs. Stigma resistance, positive aspects and self-esteem would most closely fit with self-stigma. Treatment stigma is measuring a related construct, rather than mental illness stigma. Two other measures of help-seeking, the stigma scale for receiving psychological help for depression (SSRPH) [39] and self-stigma of seeking help (SSOSH) [40], were excluded from this review for this reason (see Figure 1). Stressfulness is examining the magnitude of experienced discrimination so would most clearly fit with this subscale. These subscales highlight additional elements of stigma, not covered by the perceived, experienced and self-stigma categories, which may be useful to consider.

          Discussion

          This paper examined definitions of stigma, prejudice and discrimination and presented a review of the survey measurement of mental illness stigma. Stigma was used as an over-arching term to incorporate stigma, prejudice and discrimination. The review identified 14 scales which assessed aspects of perceived, experienced and self-stigma in 57 studies. Perceived stigma was most frequently assessed in 79% of studies, followed by experienced stigma in 46% of studies and self-stigma in 33% of studies. This is in keeping with a previous review which considered the measurement of mental illness stigma among those with personal experience of mental illness [11]. It found that 50% (n = 12) of studies used a survey based measure of status loss/discrimination (expectations), 33% (n = 8) used a survey based measure of status loss/discrimination (experiences) and 13% (n = 3) measured emotional reactions. These categories broadly map on to the perceived, experienced and self-stigma categories used in this review. Although interesting to see that the ranking of areas of emphasis is the same, this should be interpreted with caution due to the different categorisations used and as the sample includes experimental and qualitative studies as well as those using survey measures this underemphasises the proportions for survey based measures alone (as used in this study).

          Psychometric properties were presented in this review using an adapted version of the framework of Terwee and colleagues [26]. No measure provides acceptable evidence on all 5 properties. A variety of properties are presented for each measure and judgments about the most appropriate measure can be based considering these properties as well as the study needs. This table should be interpreted cautiously as reported properties are based on those provided in the initial development paper and those which were not identified may be published elsewhere. Several measures including the CESQ, ISE, DISC and EDS provided information on a limited number of the measurement properties. These measures cannot be recommended for use without further work to establish these properties. Also, if not already established (see Additional File 1) further validation is necessary for all measures when used in clinical or cultural contexts which are different from the original purpose.

          Conclusions

          The paper has provided an overview of commonly used measures of personal mental illness stigma, as a resource to provide guidance on which measure may be most appropriate in future research. This contributes evidence to support the evaluation of outcomes as part of anti-stigma campaigns or social inclusion interventions, fitting with the Medical Research Council's guidance on developing and evaluating complex interventions [41]. It builds on existing reviews by exploring this area of stigma measurement in detail and including recently developed measures.

          This review has focused on survey measures. However, as mentioned in the discussion alternative methods of considering this topic such as qualitative and experimental investigations e.g. [42, 43] provide valuable material and should be consulted by those wishing to use non-survey based measures.

          Throughout the review, stigma was categorised as perceived, experienced or self stigma. These distinctions were useful for organising the review, however many inter-connections exist between the concepts, and there was sometimes difficulty in judging which was the most appropriate to use in categorising a subscale. This points to the complex nature of stigma, as highlighted in the introduction, and reinforces the necessary interplay of cognitive, affective and behavioural aspects of perceived, experienced and self stigma, in fully understanding the individual's position in relation to stigma.

          Declarations

          Acknowledgements

          This study was funded in relation to a National Institute for Health Research (NIHR) Applied Programme grant awarded to the South London and Maudsley NHS Foundation Trust, and in relation to the NIHR Specialist Mental Health Biomedical Research Centre at the Institute of Psychiatry, King's College London and the South London and Maudsley NHS Foundation Trust. The views and opinions expressed herein are the authors and do not necessarily reflect those of the funding bodies.

          Authors’ Affiliations

          (1)
          Health Service and Population Research Department, Institute of Psychiatry, King's College London

          References

          1. Goffman E: Stigma: Notes on the Management of Spoiled Identity. Harmondsworth, Middlesex: Penguin Books; 1963.
          2. Jones E, Farina A, Hastorf A, Markus H, Milller D, Scott R: Social Stigma: the Psychology of Marked to Relationships. New York: W.H. Freeman & Co.; 1984.
          3. Elliott GC, Ziegler HL, Altman BM, Scott DR: Understanding stigma: dimensions of deviance and coping. Deviant Behaviour 1982, 3:275–300.View Article
          4. Weiss MG, Ramakrishna J, Somma D: Health-related stigma: rethinking concepts and interventions. Psychology, Health & Medicine 2006, 11:277–287.View Article
          5. Major B, O'Brien LT: The social psychology of stigma. Annual Review of Psychology 2005, 56:393–421.PubMedView Article
          6. Link BG, Phelan JC: Conceptualizing stigma. Annual Review of Sociology 2001, 27:363–385.View Article
          7. Phelan JC, Link BG, Dovidio JF: Stigma and prejudice: one animal or two? Social Science & Medicine 2008, 67:358–367.View Article
          8. Corrigan P: On the Stigma of Mental Illness. Washington, D.C.: American Psychological Association; 2005.View Article
          9. Thornicroft G, Rose D, Kassam A, Sartorius N: Stigma: ignorance, prejudice or discrimination? British Journal of Psychiatry 2007, 190:192–193.PubMedView Article
          10. Sayce L: Stigma, discrimination and social exclusion: what's in a word. Journal of Mental Health 1998, 7:331–343.View Article
          11. Link BG, Yang LH, Phelan JC, Collins PY: Measuring mental illness stigma. Schizophrenia Bulletin 2004, 30:511–541.PubMed
          12. Henderson C, Thornicroft G: Stigma and discrimination in mental illness: time to Change. The Lancet 2009, 373:1928–1930.View Article
          13. Knight MTD, Wykes T, Hayward P: Group treatment of perceived stigma and self-esteem in schizophrenia: a waiting list trial of efficacy. Behavioural and Cognitive Psychotherapy 2006, 34:305–318.View Article
          14. Van Brakel WH, Anderson AM, Mutatkar RK, Bakirtzief Z, Nicholls PG, Raju MS, et al.: The Participation Scale: measuring a key concept in public health. Disability and Rehabilitation 2006, 28:193–203.PubMedView Article
          15. Scrambler G, Hopkins A: Being epileptic: coming to terms with stigma. Sociology of Health and Illness 1986, 8:26–43.View Article
          16. LeBel T: Perceptions of and responses to stigma. Sociology Compass 2008, 2:409–432.View Article
          17. Corrigan PW, Watson AC: The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice 2002, 9:35–53.View Article
          18. Corrigan PW: The impact of stigma on severe mental illness. Cognitive and Behavioral Practice 1998, 5:201–222.View Article
          19. Caltaux D: Internalized stigma: a barrier to employment for people with mental illness. International journal of therapy and rehabilitation 2003, 10:539–543.
          20. Zeidner M, Endler NS: Handbook of Coping: Theory, Research, Applications. New York: John Wiley & Sons; 1996.
          21. Link BG, Cullen FT, Struening E, Shrout PE, Dohrenwend BP: A modified labeling theory approach to mental disorders: an empirical assessment. American Sociological Review 1989, 54:400–423.View Article
          22. Link BG, Struening EL, Neese-Todd S, Asmussen S, Phelan JC: Stigma as a barrier to recovery: the consequences of stigma for the self-esteem of people with mental illness. Psychiatric Services 2001, 52:1621–1626.PubMedView Article
          23. Mak WWS, Poon CYM, Pun LYK, Cheung SF: Meta-analysis of stigma and mental health. Social Science & Medicine 2007, 65:245–261.View Article
          24. Rusch N, Angermeyer MC, Corrigan PW: Mental illness stigma: concepts, consequences, and initiatives to reduce stigma. European Psychiatry 2005, 20:529–539.PubMedView Article
          25. Link BG: Understanding Labeling Effects in the area of mental disorders: an assessment of the effect of expectations of rejection. American Journal of Community Psychology 1987, 11:261–273.View Article
          26. Terwee CB, Bot SDM, de Boer MR, Windt DAWM, Knol DL, Dekker J, et al.: Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology 2007, 60:34–42.PubMedView Article
          27. Corrigan PW, Watson AC, Barr L: The self-stigma of mental illness: implications for self-esteem and self-efficacy. Journal of Social & Clinical Psychology 2006, 25:875–884.View Article
          28. Hayward P, Wong G, Bright JA, Lam D: Stigma and self-esteem in manic depression: an exploratory study. Journal of Affective Disorders 2002, 69:61–67.PubMedView Article
          29. Pinel EC: Stigma consciousness: the psychological legacy of social stereotypes. Journal of Personality & Social Psychology 1999, 76:114–128.View Article
          30. Kanter JWP, Rusch LCM, Brondino MJP: Depression self-stigma: a new measure and preliminary findings. Journal of Nervous & Mental Disease 2008, 196:663–670.View Article
          31. Thornicroft G, Brohan E, Rose D, Sartorius N, Leese M, for The INDIGO Study Group: Global pattern of anticipated and experienced discrimination against people with schizophrenia. The Lancet 2009, 373:408–415.View Article
          32. Stuart H, Milev R, Koller M: The Inventory of Stigmatizing Experiences: its development and reliability. World Psychiatry 2005, 4:33–37.
          33. Ritsher JB, Otilingam PG, Grajales M: Internalized stigma of mental illness: psychometric properties of a new measure. Psychiatry Research 2003, 121:31–49.PubMedView Article
          34. Wahl OF: Mental health consumers experience of stigma. Schizophrenia Bulletin 1999, 25:467–478.PubMed
          35. Link BG, Struening EL, Rahav M, Phelan JC, Nuttbrock L: On stigma and its consequences: evidence from a longitudinal study of men with dual diagnosis of mental illness and substance abuse. Journal of Health and Social Behavior 1997, 38:177–190.PubMedView Article
          36. King M, Dinos S, Shaw J, Watson R, Stevens S, Passetti F, et al.: The Stigma Scale: development of a standardised measure of the stigma of mental illness. British Journal of Psychiatry 2007, 190:248–254.PubMedView Article
          37. Kessler RC, Mickelson KD, Williams DR: The prevalence, distribution, and mental health correlates of perceived discrimination in the United States. Journal of Health and Social Behavior 1999, 40:208–230.PubMedView Article
          38. Thompson VL, Noel JG, Campbell J: Stigmatization, discrimination, and mental health: the impact of multiple identity status. American Journal of Orthopsychiatry 2004, 74:529–544.PubMedView Article
          39. Komiya N, Good GE, Sherrod NB: Emotional openness as a predictor of college students' attitudes toward seeking psychological help. Journal of counseling psychology 2000, 47:138–143.View Article
          40. Vogel DL, Wade NG, Haake S: Measuring self-stigma associated with seeking psychological help. Journal of Counseling Psychology 2006, 53:325–337.View Article
          41. Craig P, Dieppe P, MacIntyre S, Mitchie S, Nazareth I, Petticrew M: Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal 2008, 337:979–983.View Article
          42. Teachman BA, Wilson JG, Komarovskaya I: Implicit and explicit stigma of mental illness in diagnosed and healthy samples. Journal of Social & Clinical Psychology 2006, 25:75–95.View Article
          43. Dinos S, Stevens S, Serfaty M, Weich S, King M: Stigma: the feelings and experiences of 46 people with mental illness. Qualitative study. British Journal of Psychiatry 2004, 184:176–181.PubMedView Article
          44. Yanos PT, Rosenfeld S, Horowitz AV: Negative and supportive social interactions and quality of life among persons diagnosed with severe mental illness. Community Mental Health Journal 2001, 37:405–419.PubMedView Article
          45. Chung KF, Wong MC: Experience of stigma among Chinese mental health patients in Hong Kong. Psychiatric Bulletin 2004, 28:451–454.View Article
          46. Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Friedman SJ, Meyers BS: Stigma as a barrier to recovery: perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psychiatric Services 2001, 52:1615–1620.PubMedView Article
          47. Bjorkman T, Svensson B, Lundberg B: Experiences of stigma among people with severe mental illness. Reliability, acceptability and construct validity of the Swedish versions of two stigma scales measuring devaluation/discrimination and rejection experiences. Nordic Journal of Psychiatry 2007, 61:332–338.PubMedView Article
          48. Ritsher JB, Phelan JC: Internalized stigma predicts erosion of morale among psychiatric outpatients. Psychiatry Research 2004, 129:257–265.PubMedView Article
          49. Bagley C, King M: Exploration of three stigma scales in 83 users of mental health services: implication for campaigns to reduce stigma. Journal of Mental Health 2005, 14:343–355.View Article
          50. Vauth R, Kleim B, Wirtz M, Corrigan P: Self-efficacy and empowerment as outcomes of self-stigmatizing and coping schizophrenia. Psychiatry Research 2007, 150:71–80.PubMedView Article
          51. MacInnes DL, Lewis M: The evaluation of a short group programme to reduce self-stigma in people with serious and enduring mental health problems. Journal of Psychiatric & Mental Health Nursing 2008, 15:59–65.View Article
          52. Hansson L, Bjorkman T: Empowerment in people with a mental illness: Reliability and validity of the Swedish version of an empowerment scale. Scandinavian Journal of Caring Sciences 2005, 19:32–38.PubMedView Article
          53. Knight MTD, Wykes T, Hayward P: Group treatment of perceived stigma and self-esteem in schizophrenia: a waiting list trial of efficacy. Behavioural and Cognitive Psychotherapy 2006, 34:305–318.View Article
          54. Perlick DA, Rosenheck RA, Clarkin JF, Sirey JA, Salahi J, Struening EL, et al.: Stigma as a barrier to recovery: adverse effects of perceived stigma on social adaptation of persons diagnosed with bipolar affective disorder. Psychiatric Services 2001, 52:1627–1632.PubMedView Article
          55. Mueller B, Nordt C, Lauber C, Rueesch P, Meyer PC, Roessler W: Social support modifies perceived stigmatization in the first years of mental illness: a longitudinal approach. Social Science & Medicine 2006, 62:39–49.View Article
          56. Wright ER, Gronfein WP, Owens TJ: Deinstitutionalization, social rejection, and the self-esteem of former mental patients. Journal of Health and Social Behavior 2000, 41:68–90.PubMedView Article
          57. Markowitz FE: The effects of stigma on the psychological well-being and life satisfaction of persons with mental illness. Journal of Health and Social Behavior 1998, 39:335–347.PubMedView Article
          58. Kleim B, Vauth R, Adam G, Stieglitz RD, Hayward P, Corrigan P: Perceived stigma predicts low self-efficacy and poor coping in schizophrenia. Journal of Mental Health 2008, 17:482–491.View Article
          59. Lundberg B, Hansson L, Wentz E, Bjorkman T: Sociodemographic and clinical factors related to devaluation/discrimination and rejection experiences among users of mental health services. Social Psychiatry and Psychiatric Epidemiology 2007, 42:295–300.PubMedView Article
          60. Link BG, Struening EL, Neese-Todd S, Asmussen S, Phelan JC: On describing and seeking to change the experience of stigma. Psychiatric Rehabilitation Skills 2002, 6:201–231.View Article
          61. Kahng SK, Mowbray CT: What affects self-esteem of persons with psychiatric disabilities: the role of causal attributions of mental illnesses. Psychiatric Rehabilitation Journal 2005, 28:354–361.PubMedView Article
          62. Link B, Castille DM, Stuber J: Stigma and coercion in the context of outpatient treatment for people with mental illnesses. Social Science & Medicine 2008, 67:409–419.View Article
          63. Freidl M, Spitzl SP, Aigner M: How depressive symptoms correlate with stigma perception of mental illness. International Review of Psychiatry 2008, 20:510–514.PubMedView Article
          64. Blankertz L: Cognitive components of self esteem for individuals with severe mental illness. American Journal of Orthopsychiatry 2001, 71:457–465.PubMedView Article
          65. Roeloffs C, Sherbourne C, Unutzer J, Fink A, Tang L, Wells K: Stigma and depression among primary care patients. General Hospital Psychiatry 2003, 25:311–315.PubMedView Article
          66. Rosenfield S: Labeling mental illness: the effects of received services and perceived stigma on life satisfaction. American Sociological Review 1997, 62:672.View Article
          67. Freidl M, Lang T, Scherer M: How psychiatric patients perceive the public's stereotype of mental illness. Social Psychiatry and Psychiatric Epidemiology 2003, 38:269–275.PubMedView Article
          68. Markowitz FE: Modeling processes in recovery from mental illness: relationships between symptoms, life satisfaction, and self-concept. Journal of Health & Social Behavior 2001,42(1):64–79.View Article
          69. Lysaker PH, Tsai J, Yanos P, Roe D: Associations of multiple domains of self-esteem with four dimensions of stigma in schizophrenia. Schizophrenia Research 2008, in press. Corrected Proof.
          70. Freidl M, Spitzl SP, Prause W, Zimprich F, Lehner-Baumgartner E, Baumgartner C, et al.: The stigma of mental illness: anticipation and attitudes among patients with epileptic, dissociative or somatoform pain disorder. International Review of Psychiatry 2007, 19:123–129.PubMedView Article
          71. Graf J, Lauber C, Nordt C, Ruesch P, Meyer PC, Rossler W: Perceived stigmatization of mentally ill people and Its consequences for the quality of life in a Swiss population. The Journal of Nervous and Mental Disease 2004., 192:
          72. Lundberg B, Hansson L, Wentz E, Bjorkman T: Stigma, discrimination, empowerment and social networks: a preliminary investigation of their influence on subjective quality of life in a Swedish sample. International Journal of Social Psychiatry 2008, 54:47–55.PubMedView Article
          73. Rusch N, Holzer A, Hermann C, Schramm E, Jacob GA, Bohus M, et al.: Self-stigma in women with borderline personality disorder and women with social phobia. Journal of Nervous and Mental Disease 2006, 194:766–773.PubMedView Article
          74. Berge M, Ranney M: Self-esteem and stigma among persons with schizophrenia: implications for mental health. Care Management Journals 2005, 6:139–144.PubMedView Article
          75. Link BG, Mirotznik J, Cullen FT: The effectiveness of stigma coping orientations: can negative consequences of mental illness labeling be avoided? Journal of Health and Social Behavior 1991, 32:302–320.PubMedView Article
          76. Rusch N, Lieb K, Bohus M, Corrigan P: Self-stigma, empowerment and perceived legitimacy of discrimination among women with mental illness. Psychiatric Services 2006, 57:399–402.PubMedView Article
          77. Werner P, Aviv A, Barak Y: Self-stigma, self-esteem and age in persons with schizophrenia. International Psychogeriatrics 2007, 1–15.
          78. Lysaker PH, Davis LW, Warman DM, Strasburger A, Beattie N: Stigma, social function and symptoms in schizophrenia and schizoaffective disorder: Associations across 6 months. Psychiatry Research 2007, 149:89–95.PubMedView Article
          79. Lysaker PH, Buck KD, Taylor AC, Roe D: Associations of metacognition and internalized stigma with quantitative assessments of self-experience in narratives of schizophrenia. Psychiatry Research 2008, 157:31–38.PubMedView Article
          80. Lysaker PH, Roe D, Yanos PT: Toward understanding the insight paradox: Internalized stigma moderates the association between insight and social functioning, hope, and self-esteem among people with schizophrenia spectrum disorders. Schizophrenia Bulletin 2007, 33:192–199.PubMedView Article
          81. Yanos PT, Roe D, Markus K, Lysaker PH: Pathways between internalized stigma and outcomes related to recovery in schizophrenia spectrum disorders. Psychiatric Services 2008, 59:1437–1442.PubMedView Article
          82. Watson AC, Corrigan P, Larson JE, Sells M: Self-stigma in people with mental illness. Schizophrenia Bulletin 2007, 33:1312–1318.PubMedView Article
          83. Fung KM, Tsang HW, Corrigan PW, Lam CS, Cheung WM: Measuring self-stigma of mental illness in China and its implications for recovery. International Journal of Social Psychiatry 2007, 53:408–418.PubMedView Article
          84. Fung KMT, Tsang HWH, Corrigan PW: Self-stigma of people with schizophrenia as predictor of their adherence to psychosocial treatment. Psychiatric Rehabilitation Journal 2008, 32:95–104.PubMedView Article
          85. Tsang HWH, Fung KMT, Corrigan PW: Psychosocial treatment compliance scale for people with psychotic disorders. Australian and New Zealand Journal of Psychiatry 2006, 40:561–569.PubMed
          86. Dickerson FB, Sommerville J, Origoni AE, Ringel NB, Parente F: Experiences of stigma among outpatients with schizophrenia. Schizophrenia Bulletin 2002, 28:143–156.PubMed
          87. Charles H, Manoranjitham SD, Jacob KS: Stigma and explanatory models among people with schizophrenia and their relatives in Vellore, South India. International Journal of Social Psychiatry 2007, 53:325–332.PubMedView Article
          88. Rusch LCM, Kanter JWP, Manos RCM, Weeks CEM: Depression stigma in a predominantly low income African American sample with elevated depressive symptoms. Journal of Nervous & Mental Disease 2008, 196:919–922.
          89. Rosenberg M: Conceiving the Self. New York: Basic Books; 1977.
          90. Harvey R: Individual differences in the phenomenological impact of social stigma. The Journal of Social Psychology 2001, 141:174–189.PubMedView Article
          91. Landrine H, Klonoff EA: The Schedule of Racist Events: a measure of racial discrimination and a study of its negative physical and mental health consequences. Journal of Black Psychology 1996, 22:144–168.View Article
          92. Pre-publication history

            1. The pre-publication history for this paper can be accessed here:http://​www.​biomedcentral.​com/​1472-6963/​10/​80/​prepub

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          © Brohan et al. 2010

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