|AWARD PAPER: GC BORAL AWARD PAPER
|Year : 2016 | Volume
| Issue : 2 | Page : 104-114
Validation of hindi version of internalized stigma of mental illness scale
Aakanksha Singh, Sandeep Grover, Surendra K Mattoo
Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India
|Date of Web Publication||25-Apr-2016|
Dr. Sandeep Grover
Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh - 160 012
Source of Support: None, Conflict of Interest: None
Aims: To develop a Hindi translated version of the Internalized Stigma of Mental Illness (ISMI) Scale and evaluate its psychometric properties (test–retest validity, internal consistency, split half reliability, and cross-language equivalence), convergent validity and factor structure. Methodology: The study included 161 patients with severe mental disorders. Thirty-one patients were asked to complete the Hindi version of the ISMI Scale twice within a gap of 4–7 days. Another thirty patients were asked to complete the ISMI Hindi version followed by the English version after 4–7 days. Remaining hundred patients completed the Hindi version of ISMI Scale and Explanatory Model Interview Catalog (EMIC) Stigma Scale was administered by the interviewer at the same assessment. Results: Hindi version of ISMI Scale was found to have a good internal consistency (Cronbach's alpha was 0.863), split-half reliability (Spearman–Brown coefficient-0.661; Guttmann's split-half coefficient-0.645), test–retest reliability and cross-language equivalence for all the items and various domains with almost all the correlations and intraclass coefficients significant atP≤ 0.001, and convergent validity in the form of significant correlations with EMIC Stigma Scale. Factor analysis of the scale yielded five factors, which had significant overlap with the five domains of the scale described by the developer of the scale. Conclusions: The present study suggests that Hindi version of ISMI Scale developed as a part of this study has good psychometric properties.
Keywords: Internalized Stigma, stigma, validation
|How to cite this article:|
Singh A, Grover S, Mattoo SK. Validation of hindi version of internalized stigma of mental illness scale. Indian J Soc Psychiatry 2016;32:104-14
|How to cite this URL:|
Singh A, Grover S, Mattoo SK. Validation of hindi version of internalized stigma of mental illness scale. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 Dec 9];32:104-14. Available from: http://www.indjsp.org/text.asp?2016/32/2/104/181089
| Introduction|| |
It is well-known that mental illnesses are associated with significant stigma all over the world.,, Available research also suggests that mental illnesses are more stigmatizing than physical illnesses,, and there is a hierarchy of stigma associated with various mental illnesses with people with schizophrenia facing more stigma than those diagnosed with depression  and eating disorders. The emerging evidence suggests that public attitudes toward people with mental illness seem to have become more stigmatizing over the last decades in the USA and in Germany.,
In the context of mental illnesses, the term “stigma” has been defined differently by different researchers. Goffman  has defined stigma as “an attribute that is deeply discrediting” and that reduces the bearer “from a whole and usual person to a tainted, discounted one.” Elliott et al. consider stigma as a form of deviance due to which others judge an individual as not having the legitimacy to participate in a social interaction. This arises due the perception that the people with mental illnesses lack the skills or abilities to carry out such an interaction. In addition, this is also influenced by judgments on the part of others about the dangerousness and unpredictability of the persons with mental illnesses. Stafford and Scott  define stigma as “characteristic of persons that is contrary to a norm of a social unit” where a “norm” is defined as a “shared belief that a person ought to behave in a certain way at a certain time”.
Two broad types of stigmas have been defined in the context of people with mental illnesses. These include public stigma and personal stigma. Later is further categorized into perceived stigma, experienced stigma, and self-stigma. Public stigma is understood as the prejudice endorsed by the general population and manifests as discrimination toward people with mental illness. Perceived stigma is the perception or anticipation of stigma by people with a potentially stigmatized condition, and it arise out of the people's beliefs about attitudes of the general population toward their condition. If internal cultural stereotypes in these individuals exist before illness, they tend to apply these stereotypes to themselves after the illness begins, which leads to low self-esteem. Experienced stigma is the discrimination or restrictions actually faced by the affected persons. The internalization and adoption of stereotypic or stigmatizing views, i.e., of the public stigma, by the stigmatized individual, are referred to as Self-stigma or Internalized Stigma. Self-stigma is also understood as as a type of transformation of identity of self that might lead to the loss of previously held (positive) beliefs about the self, which in turn yields negative consequences for the person such as diminished self-esteem and self-efficacy. Internalized Stigma leads to a vicious cycle of poor self-image and self-identity and diminishes the awareness of their civil rights and social isolation. It has also been shown to be associated with higher depression, decreased hope, more frequent use of avoidant coping,, worsening of a psychiatric illness, and poor adherence with the treatment facility. Perceived stigma arises due devaluation experienced by the people of mental illness in the hands of others in the society, and it leads to low self-esteem, self-efficacy, and low self-confidence.
Surprisingly, there is limited literature on the stigma experienced by people with severe mental disorders from countries like India. As a part of the Indian initiative of the World Psychiatric Program to reduce the stigma and discrimination because of schizophrenia, Murthy  evaluated stigma in thousand patients in four cities. Assessment instrument was a semi-structured interview developed by a national working group for India by the World Psychiatric Association Steering Committee. It was reported that urban respondents in large centers try to hide their illness hoping to remain unnoticed, whereas rural respondents in smaller regions experience greater ridicule, shame, and discrimination, as anonymity is more difficult. Besides this, there are other studies ,,,,, from India, which have evaluated stigma experienced by patients with schizophrenia. However, one of the limitations of these studies is the use of different instruments, use of self-designed instruments, or use of instruments which have not been validated in the Indian context. All of these factors are responsible for the difficulty in comparing the existing data from India and from other parts of the world. Accordingly, there is a need to evaluate the psychometric properties of an internationally well-validated scale. In this background, the present study aimed to develop a Hindi translated version of the Internalized Stigma of Mental Illness (ISMI) Scale and evaluate its psychometric properties, convergent validity, and factor structure.
| Methodology|| |
The study was done in the outpatient setting of a Tertiary Care Hospital in North India. The study sample included 161 patients with severe mental disorders (i.e., schizophrenia, bipolar disorder, depressive disorder, and obsessive-compulsive disorder). To be included in the study, the patients were required to fulfill the diagnosis of mental illness as per the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition as assessed by MINI, aged between 18 and 65 years, clinically stable, and duration of illness of at least 2 years, must be able to read and/or English. Patients with organic brain syndrome and mental retardation were excluded. All the patients were recruited after obtaining written informed consent and the study was approved by the Ethics Committee of the Institute.
Internalized Stigma of Mental Illness Scale
ISMI is an instrument to assess Self-stigma/Internalized Stigma  from the perspective of stigmatized individuals. It can be self-rated or interviewer's based. It comprises of 28 questions with four answering options (strongly disagree-1, disagree-2, agree-3, and strongly agree-4) which are divided into five components (alienation, stereotype endorsement, perceived discrimination, social withdrawal, and stigma resistance). Higher the scores, higher is the level of self-stigma. The total ISMI Scale score range from 29 to 116. Internal consistency coefficients range from alphas 0.84 to alphas 0.96, and test–retest reliability coefficients range from 0.61 to 0.9. Although various researchers have used different cut-offs, the originator of the scale , used a cut-off of 2.5 for total and subscales of ISMI Scale to categorize the presence or absence of stigma. In this study, the original cut-offs were used. As a generic scale, it can be used in different health conditions.
Explanatory Model Interview Catalog Stigma Scale
Explanatory Model Interview Catalog (EMIC)-Stigma Scale  is a self-rated or interviewer's rated instrument to assess anticipated stigma/perceived stigma from the perspective of the stigmatized individual. It consists of 15 questions, with four answering options: Yes (3), possibly (2), uncertain (1), and no (0). The outcome is assessed as the total score; the higher the score, higher is the perceived stigma. A higher score reflects a higher level of self-stigma. As a generic scale, it can be used for different health conditions. It has been used in India to assess the stigma in cases with tuberculosis, leprosy and HIV/AIDS, and depression.
Translation of the scale
Prior to translation, the authors of the original scale were contacted for permission. The authors of the original scale informed that a Hindi version of ISMI Scale is available but not validated. However, when we reviewed the available Hindi version, it was evident that some of the items were difficult for the lay people to understand. This became more evident when we gave the Hindi version to five patients, who had difficulty in understanding some of the words. Hence, it was decided to translate the scale again before carrying out the validation.
The World Health Organization's translation back-translation methodology  was used to translate the scale. Initially, the English version of the scale was given to three bilingual mental health professionals (three psychiatrists) who were fluent in both Hindi and English languages. They were asked to translate the English version and additionally suggest any modifications which may be required in the context of Indian culture. The three Hindi translated versions were reviewed by another panel of three mental health professionals (who were not a part of the initial translation) and a consensus version was prepared. The consensus version was prepared based on the review of the original English version, three available Hindi translated versions, and inputs from the second expert panel. The consensus translated version was given to five patients for their view in terms of assessing the simplicity of the language and their understanding of the issues being assessed by the questionnaire. After this the consensus version was back-translated into English by the third set of three mental health professionals and the back-translated versions were compared with the original English version and if required, modifications were done in the Hindi version and a final Hindi version was prepared, and it was back-translated and sent to the original authors of the instruments. The original authors approved the back-translated English version with one minor correction. This suggestion was incorporated into the final Hindi version was prepared.
All the patients with a clinical diagnosis of a severe mental disorder (i.e., schizophrenia, bipolar disorder, depressive disorder, and obsessive-compulsive disorder) attending the psychiatric outpatient services were approached. They were explained about the nature of the study. Patients who agreed to participate and provided informed consent were assessed on selection criteria. Those who met the selection criteria were recruited. The sociodemographic and the clinical profile sheets were completed from the information provided by the patient, the caregiver, and the medical records. Of the 161 patients, 31 patients were asked to complete the Hindi version of the ISMI Scale twice within a gap of 4–7 days. Another thirty patients were asked to complete the ISMI Scale - Hindi version followed by the English version after 4–7 days. Remaining hundred patients completed the Hindi version of ISMI Scale, and EMIC Stigma Scale was administered by the interviewer at the same assessment.
Data were analyzed by using the Statistical Package for the Social Sciences Windows version 14 (SPSS version 14, SPSS Inc., Chicago). Mean and standard deviation were evaluated for continuous variables. Frequency and percentages were calculated for categorical variables. Internal consistency of the Hindi version was estimated in the form of Cronbach's alpha. Spearman–Brown coefficient and Guttman split-half coefficient were calculated to evaluate the split-half reliability. The test–retest reliability of the Hindi version was calculated in the form of Pearson correlation coefficient and intraclass correlation coefficients. Cross-language equivalence of Hindi and English versions was studied by using intraclass correlation coefficients and Pearson's correlation coefficient. Convergent validity between ISMI Scale and EMIC Stigma Scale was evaluated by studying the Pearson's correlation coefficient.
Principal component analysis was performed to extract factor structure of the ISMI Scale. Initially, KMO value and Barrett's test of sphericity were evaluated to check whether the data can be used for factor analysis. Kaiser–Guttman rule was used to determine the optimal number of factors. Multiple factor analyses and scree plots were run to identify the optimal number of factors. A loading of ≥0.40 to extracted factors was considered meaningful and interpretable. When a particular item loaded ≥0.40 on 2 or more factors, it was assigned to the factor where it had the highest loading.
| Results|| |
The sociodemographic and clinical profile of the total study sample (n = 161) are shown in [Table 1].
The mean age of patients was 36.91 (standard deviation [SD]-12.2; range: 18–65) years. There was a slight predominance of males (51.2%) and those from urban background (54.4%). About two-third (63.8%) of the study sample was married. Majority of the patients belonged to nuclear families (56.9%), low socioeconomic status (64.3%), were Hindu by religion (71.2%), and were not on paid employment (61.7%). Mean years of education of patients were 10.91 (SD-4.02; range: 5–17), and 59% of them belonged to middle or lower middle socioeconomic class [Table 1].
The mean duration of illness was 13.08 years (SD-5.08) years. Majority of the patients were suffering from schizophrenia (n = 120; 75%), followed by those with depressive disorders (n = 18; 15%), bipolar disorder (n = 14; 11.66%), and obsessive compulsive disorder (n = 9; 7.5%).
Data of all the 161 patients were used for the assessment of the internal consistency of the scale. The Cronbach's alpha was 0.863 indicating good inter-item correlation.
Spearman–Brown coefficient and Guttmann's split-half coefficient were used to assess the split-half reliability of the scale. The Cronbach's alpha was 0.84 for part 1 (comprising 15 items) and 0.754 for part 2 (comprising 14 items) of the scale. The Spearman–Brown coefficient was 0.661, and Guttmann's split-half coefficient was 0.645 indicating acceptable spilt-half reliability.
Test–retest reliability of the Hindi version was evaluated by asking 31 patients to complete the same questionnaire twice within a gap of 4–7 days. As is evident from [Table 2], Pearson's correlation coefficients and intraclass correlation coefficients between the two assessments were significant at 0.001 or <0.001 level for 27 out of 29 items. For one item, the significance level was <0.01 and the remaining one item, the significance level was at <0.05. The total scores obtained for each domain (as per the original scale) of ISMI Scale also had a good test–retest reliability [Table 3].
|Table 2: Test–retest reliability, cross-language reliability, and factor structure of Internalized Stigma of Mental Illness Scale|
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|Table 3: Test–retest reliability and cross-language reliability of the various domains of Internalized Stigma of Mental|
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For the assessment of cross-language equivalence or reliability, thirty patients were initially asked to complete the Hindi version, and this was followed by the request to complete the English version within a gap of 4–7 days. As is evident from [Table 2], for 28 out of 29 items the Pearson's correlation coefficients and intraclass correlation coefficients between the two assessments were significant at 0.001 or <0.001 level. For the remaining item, the significance level of correlation was <0.01. The total scores obtained for each domain of ISMI Scale also had a good test–retest reliability. The total scores obtained for each domain (as per the original scale) of ISMI Scale also had a good cross-language reliability [Table 3].
Factor structure of the scale
The study sample of 161 subjects was about 5.5 times the number of items in the scale. This was above the recommended numbers required for factor analysis. Initially to test the null hypothesis that the various items are unrelated in the study population, Bartlett's test of sphericity was used. The initial Chi-square statistic value was 2168 with a degree of freedom of 406, which was significant at P < 0.001. The Kaiser––Meyer–Olkin measure of sampling adequacy for the study group was 0.846, which indicated that the data could be used for factor analysis. The initial factor analysis yielded six-factor models with an eigenvalue of >1 and the total variance explained by these factors was 62.15%. However, on inspection scree plot showed a tailing at five-factor structure. Hence, for further factor analysis, five- and four-factor models were generated. As is evident from the [Table 4], five-factor model explained 58.6% and four-factor model explained 54.79% of the variance. The loading of the various items on the different factors is shown in [Table 3]. As is evident in the five-factor model, all the items (except for item number 24) loaded on a factor. However, in the four-factor model, all the items loaded on the one of the four factors.
Comparison of factor structure with original scale
When the factor structure obtained in the present study was compared with the original scale, as shown in [Table 5], lots of similarities were seen. First, the original scale also has five domains. The Factor-1 of the five-factor model in the present study included the similar items with an additional item number 9, as described for the domain of “alienation” in the original scale. Factor-2 of the five-factor model included six items of which five were similar to the “social withdrawal” domain of the original scale. Factor-3 included four items which were similar to the “stereotype endorsement” of the original scale. Factor-4 included all except one item which are included in the “stigma resistance” domain of the original scale. Factor-5 included only three items, of which two items had overlap with the “discrimination experience” domain of original scale. When the four-factor model was compared with the original scale, it was evident that there was no equivalent factor for the “discrimination experience” as described in the original scale. Taking into the similarities between the five-factor model and the original scale, the five-factor model was considered to be more suitable to describe the scale and the factors equivalent to the original scale are shown in [Table 5].
|Table 5: Comparison of distribution of the items on various domains in the original scale and current factor analysis|
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Level of stigma and proportion of participants experiencing stigma
[Table 6] shows mean scores obtained for the various domains of stigma. As is evident the mean scores for various domains as per the original scale and the factor structures obtained in the present study were comparable. Highest score was obtained for the “alienation” domain followed by “stereotype endorsement” and “stigma resistance.” There was slight discrepancy in the hierarchy for the domains of “discrimination experience” and “social withdrawal” between the description of original scale and the current five-factor model.
|Table 6: Stigma scores and proportion of study population experiencing stigma for the study sample|
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In terms of the proportion of participants experiencing stigma, more than half (54.03%) of the patients experienced alienation as per the original scale, whereas 63.35% experienced alienation as per the factor structure of the present study. Sigma resistance was reported by slightly more than one-third of the participants as per both the evaluations. When the proportion of patients experiencing stigma in various domains as per the original scale and the current factor analysis were compared, there were some differences in terms of the domains of “discrimination experience” and “social withdrawal” domain [Table 6].
Correlations between various domains of the Internalized Stigma of Mental Illness Scale
As shown in [Table 7], there was a significant positive correlation between the first four domains of the ISMI Scale as per the original scale and similar pattern followed in the domains as per the five-factor model of the current study. There was no correlation of “stigma resistance” domain as per the original scale (except for positive correlation between stigma resistance and social withdrawal) and the five-factor model of the current study with other domains except for significant positive correlation between “discrimination experience equivalent” and “stigma resistance equivalent” domain.
Convergent validity of the Internalized Stigma of Mental Illness Scale with Explanatory Model Interview Catalog Stigma Scale
One hundred patients completed EMIC Stigma Scale in addition to the ISMI Scale. As shown in [Table 8], there was a significant positive correlation between EMIC and all the domains of ISMI Scale as per the original scale except for stigma resistance, with which there was a significant negative correlation. As per the factor structure of the current study, similar positive correlations were noted except for the lack of correlation between EMIC Stigma Scale and the “discrimination experience equivalent” domain. Stigma resistance equivalent correlated negatively with EMIC total score.
|Table 8: Correlation between Explanatory Model Interview Catalog Stigma Scale and various domains of Internalized Stigma of Mental Illness Scale|
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| Discussion|| |
Although stigma experienced by patients with various mental disorders has been studied across the world, surprisingly, there are very few studies from India. Better understanding and identification of stigma may help to reduce stigma and help to prevent its adverse consequences. However, there is a need for properly validated scale for the evaluation of stigma.
The ISMI Scale was designed to measure the subjective experience of stigma among patients with mental illnesses. It was developed in collaboration with people with mental illnesses and was validated among 127 outpatients. The original version of the scale has been shown to have high internal consistency and test–retest reliability. Over the years, the scale has been extensively used in many countries and has been translated into at least 42 languages including Hindi, Urdu, and Bengali. However, these versions were not evaluated for the psychometric properties. The scale has been previously used for patients with depression, schizophrenia, substance abuse, eating disorders, epilepsy, inflammatory bowel disease, leprosy, and smoking.
Although the ISMI Scale was earlier translated in Hindi, it was not validated. Further, a review of the available Hindi version suggested that the translated version was difficult for the lay people to understand. Hence, there was a need to develop a Hindi version, which could be easily understood by lay people and was suitable for use in the Indian context. Accordingly, the present study attempted to develop a Hindi version by using standard WHO translation-back translation methodology and test the psychometric properties of the Hindi version of ISMI Scale.
The Cronbach's alpha for estimation of internal consistency of the scale was 0.863. In general, a Cronbach's alpha value of 0.7 is considered a desirable attribute of any scale used in clinical practice. Accordingly, it can be concluded that the Hindi version of ISMI Scale has good internal consistency and that the items of the scale assess similar characteristics. The initial version of the ISMI Scale had a Cronbach's alpha of 0.92 and that of 29 item version was 0.90 and the finding of the present study is comparable with the same. Spearman–Brown coefficient and Guttmann's split-half coefficient for the scale were 0.661 and 0.645 indicating high split-half reliability.
The test–retest reliability for each item and that for various domains of ISMI Scale was also high. Of the 29 items, the intraclass correlation coefficient was more than 0.8 for the 26 items, and all the domains of the scale. This indicates that the construct measured by the scale was stable over time. The test–retest reliability of various domains of the Hindi version of the ISMI Scale were comparable with that reported for the original scale.
The cross-language equivalence for each item and that for various domains the scale was also high with 25 items having intraclass correlation coefficient more than 0.8 and all the domains having intraclass correlation coefficient more than 0.8 too, suggesting that the Hindi version developed as a part of this study was very akin to the English version.
Convergent validity of the Hindi version of the scale was evaluated by using EMIC Stigma Scale, and there were significant positive correlations between EMIC Stigma Scale and the first four domains of the ISMI Scale and significant negative correlation with the stigma resistance domain of ISMI Scale. The stigma resistance domain in fact is understood as a separate domain of ISMI Scale and is consider having no correlation or negative correlation with the other domains of ISMI Scale. Findings of the current study support the same notion and suggest that Hindi version of ISMI Scale has a good convergent validity.
The original scale has been described to have five-factor structure, i.e. alienation, stereotype endorsement, perceived discrimination, social withdrawal, and stigma resistance. Stigma resistance is considered to be a separate domain and reported to be different than other four domains of the scale. In the present study, initial factor analysis yielded six factors. However, when we reviewed the scree plot tailing was seen at the five factors. Accordingly, we evaluated the data further for the five-factor model. The five-factor model of Hindi version of ISMI Scale had a lot of similarities with the five-factor model reported for the original scale. Many other studies have also evaluated the factor structure of the various translated versions of the scale and have come up with 3–5 factor models.,,,, In general, it is said that these studies partially replicate the factor structure of the scale. The present study adds to the existing literature in that the Hindi version of the ISMI also supports the five-factor model for the scale. Correlation analysis of the various domains of the scale also shows that the first four domains correlate with each other and the stigma resistance domain is in general separate from other domains.
In the present study, 54.03–63.35% of patients reported alienation. This is slightly higher than the reported range of 27.9–46.9% in studies from various parts of the world.,,, This possibly suggests that patients from India experience higher level of alienation compared to other parts of the world. Stereotype endorsement was reported by about 27–28% of the participants in the present study, and this is in the reported range of 4–30% for patients from other parts of the world.,,,, Similarly, the proportion of patients (18.63–24.84%) reporting discrimination experience were also in the reported range of 11.3–48.1% and those reporting social withdrawal (14.90–20.49%) were also the reported range of 18.5–45% from the other parts of the world., 40, ,,, Previous studies from various parts of the world have reported stigma resistance in 12–58.1% of patients and the same was reported by slightly more than one-third of the patients in the present study.,, Accordingly, it can be concluded that the stigma experienced by mentally ill patients in India is comparable to that experienced by patients from other parts of the world.
| Conclusions|| |
To conclude, the present study suggests that the Hindi version of the ISMI Scale has good psychometric properties, and the extent of stigma experienced by patients in India is comparable to other parts of the world. It is expected that availability of the culturally acceptable Hindi version of the ISMI Scale will pave the path for further studies on stigma from India. Future studies can evaluate various correlates of stigma and identify the factors which could be important in reducing the stigma experienced by patients with various mental disorders. Further availability of the Hindi version can help in better understanding of stigma in the sociocultural context. Better understanding and identification of determinants might suggest ways to reduce stigma and help to prevent its adverse consequences. Understanding the relationship of stigma with correlates like a burden, medication compliance, attitude toward medications, and causal models can help in designing and carrying out appropriate anti-stigma measures. Clarifying the relationship of stigma experienced by the patients can also help in designing programs which can focus on stigma experienced by the patients.
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Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8]
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