|AWARD PAPER: DR GC BORAL AWARD PAPER
|Year : 2018 | Volume
| Issue : 1 | Page : 21-29
Internalized stigma experienced by patients with first-episode depression: A study from a tertiary care center
Swapnajeet Sahoo, Sandeep Grover, Rama Malhotra, Ajit Avasthi
Department of Psychiatry, PGIMER, Chandigarh, India
|Date of Web Publication||29-Mar-2018|
Prof. Sandeep Grover
Department of Psychiatry, PGIMER, Chandigarh
Source of Support: None, Conflict of Interest: None
Background: Although there is abundant literature on stigma and its correlates in patients with severe mental illnesses such as schizophrenia and bipolar disorder, data on stigma experienced by patients with first-episode depression (FED) are limited. Aims and Objectives: To estimate internalized stigma perceived by patients with FED and to assess the relationship of stigma with sociodemographic and clinical variables. Methodology: This cross-sectional study included 107 patients with FED with duration of illness of at least 1 month, currently not meeting the criteria of syndromal depression (as assessed on Hamilton depression rating scale score ≤ 7). These patients were assessed on Internalized Stigma of Mental Illness Scale (ISMIS) for internalized stigma and Participation Scale for restriction of activities. Results: About two-fifths of patients (41.1%) reported stigma as per the total ISMIS score. In terms of various domains of stigma, stereotype endorsement (54.2%) was reported by the highest proportion of patients and this was followed by alienation (47.7%) and discrimination experience (38.3%). About half of the study sample (49.5%) reported restriction in participation with one-third of the sample reporting having severe or extreme restriction. Younger age, longer duration of depressive episode, and presence of comorbid physical illness were found to be strongly associated with higher level of stigma. Higher level of participation restriction was associated with higher level of stigma in the domains of alienation (P ≤ 0.001) and social withdrawal (P ≤ 0.004). Conclusions: The present study suggests that internalized stigma/self-stigma is highly prevalent among patients with FED. Accordingly, there is a need to develop stigma mitigation programs addressing these patients at the earliest to improve their treatment outcome.
Keywords: Correlates, depression, first-episode depression, stigma
|How to cite this article:|
Sahoo S, Grover S, Malhotra R, Avasthi A. Internalized stigma experienced by patients with first-episode depression: A study from a tertiary care center. Indian J Soc Psychiatry 2018;34:21-9
|How to cite this URL:|
Sahoo S, Grover S, Malhotra R, Avasthi A. Internalized stigma experienced by patients with first-episode depression: A study from a tertiary care center. Indian J Soc Psychiatry [serial online] 2018 [cited 2020 Jun 4];34:21-9. Available from: http://www.indjsp.org/text.asp?2018/34/1/21/228782
| Introduction|| |
The World Health Organization (2001) defines stigma as “a mark of shame, disgrace or disapproval which results in an individual being rejected, discriminated against, and excluded from participating in a number of different areas of society.” Stigma experienced by people with mental illnesses can adversely affect a person's treatment-seeking behavior. Stigma in patients with mental illness has been found to have three core elements: (1) misinformation or ignorance about the stigmatized condition/illness, (2) negative attitude or prejudice toward a stigmatized group/individual, and (3) discrimination of the stigmatized group/individual from the society. Stigma is quite prevalent among patients with severe mental illnesses (schizophrenia and bipolar disorder) as well as their caregivers as these conditions have a chronic course with significant disability in overall functioning of the individual.,,
There are different types of stigma associated with various mental disorders. These are (1) personal stigma or the individual's stigmatizing attitudes and beliefs about other people; (2) perceived stigma which is nothing but the sufferer's beliefs about the negative and stigmatizing views that other people hold toward their condition; (3) self-stigma which is the stigmatizing views that individuals hold about themselves; and (4) structural stigma which is the policies of private and governmental institutions and cultural norms that restrict the opportunities for people with depression and anxiety. Stigma is universally experienced by people with various mental disorders. Available data suggest that regardless of the type of diagnosis,, stigma is typically reported by >85% of service users across the world.,
Depression is the third leading contributor to the worldwide burden of diseases. Accordingly, it is important that the patients with depression are treated adequately. However, stigma appears to a major roadblock in seeking treatment and continuing the treatment on the long run.,
Few studies have evaluated different types of stigma associated with depression. Studies which have evaluated the public stigma against patients with schizophrenia and depression have found that people diagnosed with schizophrenia are seen as violent and dangerous, while people with depression may be seen as more responsible for their illness. There are some data to suggest that people with depression and anxiety disorder report that the stigma and discrimination they experience may be worse than their mental health condition. A multinational study conducted in 35 countries which estimated the pattern of stigma and discrimination reported by patients with major depressive disorder (MDD) (n = 1082) using the discrimination and stigma scale (DISC) revealed that about 79% of the sample reported experiencing discrimination in at least one life domain, more than two-third of the sample had stopped themselves from initiating a close personal relationship, and about one-fourth stopped themselves from applying for work and education domains. It was also noted that patients with more number of lifetime episodes, history of inpatient admission, being unemployed, and poor social functioning reported higher levels of experienced discrimination. Subjects with a diagnosis of MDD were found to have a low willingness to reveal their diagnosis to close ones, suggesting that stigma may be a significant barrier to help-seeking behavior., Similar studies conducted in Serbia and Nigeria also suggest that higher level of perceived stigma and experienced discrimination in domains of family relationships, social functioning, getting employment, and feeling the need to conceal diagnosis of being depressed.,
Some of the studies have compared stigma experience by patients with major depression with other psychiatric disorders, and these suggest that neither diagnosis nor level of functioning was associated with the extent of discrimination and stigma experienced by the patients., A recent multicenter study from India which included patients with diagnosis of schizophrenia, bipolar disorder, and recurrent depressive disorder (RDD) assessed stigma using Internalized Stigma of Mental Illness Scale (ISMIS) revealed that patients with RDD experience lower level of stigma when compared to patients with schizophrenia and bipolar disorder. However, in all the three diagnostic groups, stigma was associated with shorter duration of illness, shorter duration of treatment, and younger age of onset. This suggests that higher level of stigma is experienced during the initial phases of illness. Accordingly, it can be hypothesized that patients with first-episode depression (FED) may report higher level of stigma. An European multinational study which compared the experience of stigma and discrimination between subjects with first-episode schizophrenia (n = 150) with FED (n = 176) using the DISC revealed that subjects with the diagnosis of FED reported discrimination in higher number of life areas (meeting neighbors, dating, education, marriage, religious activities, physical health, and acting as a parent) than those with schizophrenia.
Although there is abundant literature on stigma and its correlates in patients with severe mental illness such as schizophrenia and bipolar disorder, the data on stigma experienced by patients with FED are very scarce. FED can lead to the first contact with mental health services. People with stigmatizing attitude may either refrain from seeking mental health care or drop out early from treatment. Accordingly, high degree of stigma in patients with FED can lead to increased severity and chronicity of the illness. However, little is known about the factors which influence stigma among patients with depression. Although few studies from India have evaluated stigma among patients with schizophrenia, bipolar disorder, and RDD,,, no study is available from India which has evaluated internalized stigma among patients with FED in particular. Accordingly, there is an urgent need to estimate the stigma experienced by patients with FED as early treatment and identification of stigmatizing beliefs in this group of individuals can improve the overall course and outcome of depression. Accordingly, this study aimed to estimate internalized stigma perceived by patients with FED and to assess the relationship of stigma with sociodemographic variables, clinical variables, and level of depression.
| Methodology|| |
It was a cross-sectional study and the subjects were recruited from the patients attending the follow-up clinics of the outpatient services of Department of Psychiatry, PGIMER, Chandigarh, by purposive sampling. The study was approved by the Ethics Committee of the Institute, and the study participants were recruited after obtaining written informed consent.
To be included in the study, the participants were required to be aged ≥18 years, fulfilling the diagnosis of a depressive episode as per the DSM IV (as assessed by MINI-PLUS) as evaluated by a qualified psychiatrist, duration of illness of at least 1 month, currently not meeting the criteria of syndromal depression (as assessed on Hamilton depression rating scale (HDRS) score ≤7), and able to read Hindi/English. Patients with comorbid psychiatric disorders (except tobacco dependence), organic brain syndrome, and intellectual disability were excluded from the study.
The consenting subjects were assessed on the following instruments.
Mini international neuropsychiatric interview (MINI PLUS)
MINI Plus is a brief-structured interview for diagnosis of psychiatric disorders that can be administered in 25–30 min. It is divided into modules corresponding to diagnostic categories. It elicits all the symptoms listed in the symptom criteria for DSM-IV and ICD-10 for major Axis I diagnostic categories, one Axis II disorder, and suicidality. It was used to establish the diagnosis of first-episode MDD and to rule out psychiatric comorbidities. Reliability of this instruments ranges from good to excellent (kappa = 0.51–0.90) for various psychiatric disorders.
Hamilton depression rating scale
It is a clinician-rated 17-item scale. Each item is rated on 0–4 or 0–2, according to intensity and frequency of symptoms in the past few days. For this study, it was used to assess remission and only those patients who had HDRS score <7 were included.
Internalized Stigma of Mental Illness Scale
ISMIS is an interview-based instrument to assess self-stigma/internalized stigma, from the perspective of stigmatized individuals. It comprises 29 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. As a generic scale, it can be used in different health conditions. Although various researchers have used different cutoffs, the originator of the scale , used a cutoff of 2.5 for total and subscales of ISMIS to categorize the presence or absence of stigma. The scale has been validated in Hindi for the use in Indian population and has been found to have a five-factor model similar to the original scale but has some differences in the item loading on various factors. In this study, the subscale scores were calculated using both original scale and the Hindi validated scale.
The participation scale
Participation scale is an interviewer-based scale which assesses the impact of stigma from the perspective of stigmatized individuals by measuring the severity of restrictions in participation in various day-to-day activities, social activities, community participation, and job-related activities. It consists of 18 questions and the answering options consist of two levels. First level has five options: not satisfied, yes, sometimes, no, and irrelevant. If the person responds as “yes” or “sometimes” at the first level, then second level of problem assessment is done which has four options: no problem (1), small problem (2), medium problem (3), and large problem (5). A high sum score indicates a high level of participation restriction. A cutoff point of 12 has been shown to indicate what is “normal” (i.e., not having significant participation restriction).
Statistical Package for the Social Sciences Windows version 14 (SPSS version 14, SPSS Inc., Chicago, IL, USA) was used to analyze the data. Analysis included calculating frequency/percentage for categorical variables and mean and standard deviation (SD) for continuous variables. Comparisons were done using Student's t-test, Mann–Whitney-U test, Chi-square test, and Fisher's exact test. Relationship between stigma and various sociodemographic and clinical variables was studied by Pearson's product moment correlation, Spearman's rank correlation coefficient, t-test, Chi-square test, and ANOVA which ever applicable.
| Results|| |
The demographic and clinical profile of the study sample is shown in [Table 1]. The study included 107 patients with FED. Majority of patients were females (69.2%), married (85%), of Hindu religion (55.1%), not on paid employment (71%), from nuclear family setup (55.1%), and hailing from rural background (54.2%). The mean age of the sample was 40.18 (SD = 11.45) years. About three-fourth of the patients with FED were diagnosed to be having moderate-depressive episode (73.8%). The mean HDRS score of the sample was 5.17 (SD = 1.31).
|Table 1: Sociodemographic and clinical profile of the study sample (n=107)|
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The mean raw score on ISMIS was 69.47 (SD = 14.23). As evident from [Table 2], among the various domains of ISMIS, the mean score was highest for the domain of stereotype endorsement followed by alienation and stigma resistance. When the score of 2.5 was used as a cutoff to categorize the presence or absence of stigma, about two-fifths of patients (41.1%) had stigma as per the total score. On the basis of mean scores of various domains, 62.6%–54.2% and 44.9%–47.7% of participants reported stereotype endorsement and alienation, respectively. This was followed by discrimination experience (38.3%) and social withdrawal (37.4%). When the scoring was considered as per the Hindi ISMIS five-factor model domains, more number of subjects reported stereotype endorsement (62.6%) and discrimination experience (42.1%).
The mean participation score of the sample was 20.02 (SD = 21.12). About half of the study sample (49.5%) reported restriction in participation with one-fourth of the sample reported to be having severe restriction (24.3%) and one-tenth reported extreme restriction (10.3%) due to illness. Details are mentioned in [Table 2].
Relationship of various domains of stigma with different sociodemographic and clinical variables
Sociodemographic variables such as gender, education in years, marital status, religion, occupation, type of family, and locality (urban/rural) had no influence on the mean scores of various domains of ISMIS and ISMIS total score of four domains (except stigma resistance). Younger patients reported more stigma in the domains of alienation (Pearson correlation coefficient = 0.217; P = 0.025*), had higher ISMIS total score of five domains (Pearson correlation coefficient = 0.269; P = 0.005**) and higher ISMIS total score of four domains except stigma resistance (Pearson correlation coefficient = 0.266; P = 0.006**).
Among the clinical variables, total HDRS score at the time of assessment had no influence on the mean scores of various domains of ISMIS and ISMIS total score of four domains (except stigma resistance). Longer duration of depressive episode was associated with higher stigma as indicated by the total ISMIS stigma score of four domains. Age of onset of FED was also found to be negatively correlated with alienation, stereotype endorsement, discrimination experience, total ISMIS score, and ISMIS total score of four domains (except stigma resistance). The presence of comorbid physical illness was associated with higher stigma in the domain of alienation (t-test value = 2.39; P = 0.018*). The total participation score correlated positively with the scores of stigma alienation, discrimination experience, social withdrawal, total ISMIS score, and total ISMIS score excluding stigma resistance.
In addition, it was found that higher proportion of patients with participation restriction (score >12; n = 53) reported alienation (Chi-square value = 17.282; P ≤ 0.001***) and social withdrawal (Chi-square value = 8.25; P ≤ 0.004**), total stigma score, when scores of all five domains (Chi-square value = 10.397; P = 0.001**) were taken into account or when total stigma score was calculated excluding stigma resistance domain (Chi-square value = 13.086; P ≤ 0.001***) [Table 3].
|Table 3: Association of stigma with various continuous clinical variables|
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Association between different domains of stigma
As evident from [Table 4], the domains of alienation, stereotype endorsement, discrimination experience, and social withdrawal correlated significantly with one another as per the original scale and Hindi-validated ISMIS scale. However, the domain of stigma resistance did not correlate with any domains of stigma in the original ISMIS scale but correlated significantly with discrimination experience in the Hindi ISMIS scale; however, the association was weak compared to other significant associations.
| Discussion|| |
Stigma toward mental illness is not an unknown fact. It has been a major cause of distress for patients suffering from mental illnesses even when they are in remission or have recovered completely. The prevalence of stigma is influenced by the illness-related, societal, and cultural factors. Studies from West and India show that there is some hierarchy in the prevalence of stigma across different mental disorders, with, in general, patients with schizophrenia reporting higher level of stigma than that experienced by patients with bipolar disorder, depressive disorders, and eating disorders.,, However, some of the studies also suggest that the perceived stigma and experienced discrimination by subjects with mental illnesses are not dependent upon the type of diagnosis., An important fact noted in some of the studies is that patients with severe mental disorders experience higher level of stigma in the early part of illness, irrespective of the diagnosis.
Though some of the studies from India have evaluated stigma experienced by patients with severe mental illness, till date, no study to best of our knowledge addressed the stigma experienced by patients with FED. The present study attempts to address this void.
Studies involving patients with MDD show that patients with MDD report significant level of stigma and discrimination in more than one domain of life.,, None of the previous studies, which have evaluated stigma among patients with MDD, have relied upon ISMIS; hence, it is not possible to directly compare the findings of the present study with the existing literature. Studies which have relied upon the use of DISC suggest that a very high proportion (79%) of patients with MDD report facing discrimination. When the findings of the present study are compared with this study, it is evident that the discriminatory experience faced by patients with FED in the Indian context is much lower (38.3%–42.1%). Although the difference could be attributed to the use of different instruments, this possibly also reflects cultural differences. In the Indian context, when someone experiences an illness, usually the family around them stands like a support to care for them and assume the role of the sick family member. Hence, possibly, the patients with FED do not report having experienced significant discrimination. However, when one compares the findings of the present study with the previous studies from India, which have evaluated stigma in patients with schizophrenia, bipolar disorder, and RDD using ISMIS, it is evident that proportion of patients with FED reporting discriminatory experience are comparable to schizophrenia (21%–42.2%) and bipolar disorder (23.8%–38.9%) and significantly higher than that reported for RDD.,,,, This finding suggests that possibly higher proportion of patients with FED depression perceive discrimination compared to those with RDD.
Previous studies from India, which have evaluated stigma using ISMIS, suggest varying prevalence of alienation (24.8%–81%), stereotype endorsement (26%–43.4%), social withdrawal (16%–42.7%), and stigma resistance (37.3%–45%) among patients with schizophrenia.,,, Overall, 29%–37.9% of patients with schizophrenia reported stigma.,,, Similarly, among patients with bipolar disorder, the prevalence of alienation ranges from 15.7% to 28.6%, stereotype endorsement ranges from 23.8% to 24.1%, social withdrawal ranges from 28.6% to 35.2%, stigma resistance ranges from 25.9% to 42.7%, and overall prevalence of stigma ranges from 20.6% to 28.1%., Previous studies which have focused on patients with RDD have reported alienation (15.1%), stereotype endorsement (31.5%), social withdrawal (29.3%), stigma resistance (35.8%), and overall stigma (21%) in a small proportion of cases. When one attempts to compare the findings of the present study with the existing literature, it is evident that compared to patients with bipolar disorder and RDD, higher proportion of patients with FED report alienation, stereotype endorsement, discriminatory experience, social withdrawal, and total stigma, whereas smaller proportion of patients report stigma resistance. When compared with patients with schizophrenia, higher proportion of patients with FED reported stereotype endorsement and overall stigma, whereas lower proportion reported stigma resistance. Accordingly, it can be said that compared to patients with schizophrenia, bipolar disorder, and RDD, patients with FED faced significantly higher level of stigma. Accordingly, it can be said that there is an urgent need to address the stigma among patients with FED. It is well known that a significantly higher proportion of patients with FED drop out of treatment, stop treatment or are poorly compliant with their medications., It is quite possible that this high level of stigma contributes to the same. Hence, it is important to develop intervention programs to mitigate the stigma among patients with FED.
Previous study which evaluated stigma among patients with schizophrenia, bipolar disorder, and RDD also suggested that across the various psychiatric disorders studied, shorter duration of illness, shorter duration of treatment, and younger age of onset are associated with higher level of stigma. This finding further explains the higher prevalence of stigma among patients with FED. Considering these associations, it can be said that clinicians should prioritize addressing stigma among patients experiencing first episode of mental disorder and those visiting the mental health-care facilities during the initial phase of illness.
A multinational European study which evaluated stigma among patients with FED and first-episode schizophrenia reported that subjects with FED faced more discrimination in a greater number of life areas (meeting neighbors, dating, education, marriage, religious activities, physical health, and acting as a parent). The authors of this study postulated that such high rates of discrimination in patients with FED as compared to subjects with schizophrenia could possibly be due to attitude of general public toward depression as being a less serious illness than schizophrenia that requires less care and help. Due to this, people may be less supportive toward subjects with depression, and hence, they feel being discriminated. The present study also supports higher prevalence of stigma among patients with FED when compared to schizophrenia. Many a times, it is often seen that subjects with depression seek consultation on their own and request not to disclose their diagnosis to family members and others, citing reasons that family members will be more stressed if they get to know about their mental illness. This could possibly explain the presence of poor support for patients with FED. Besides the hypothesis given by Corker et al., other factors which could possibly explain higher level of stigma among patients with FED could be the presence of insight and universal feeling of distress. It would be interesting to evaluate these variables among patients with various psychiatric disorders in the future.
With regard to association of demographic and clinical correlates of stigma, the present study suggests that among patients with FED, stigma is not influenced by demographic variables such as gender, education in years, marital status, religion, occupation, type of family, and locality (urban/rural). However, younger patients reported more stigma in the domains of alienation and had higher total stigma score. Association of stigma with younger age supports similar association across different diagnostic categories and suggests that younger persons are more vulnerable to experience stigma. Hence, this vulnerable group must be provided intervention on priority so as to reduce self-stigma among patients with FED.
Among the clinical variables, severity of residual depressive symptoms did not have any association with stigma. However, younger age of onset was associated with higher stigma. These findings are also supported by the multicenter study on stigma among patients with severe mental disorders. In the present study, longer duration of depressive episode was associated with higher stigma. Although superficially this finding appears to contradict the findings of the multicenter study on stigma from India, it is important to understand that, in the present study, the duration of illness ranged from 1 month to 13 months with a mean of 4.66 months. This is in contrast to the previous study, which included patients with mean duration of illness of 8.5 years. It can be said that to experience stigma, the symptoms of an illness need to last for some duration. Accordingly, in the present study, stigma was associated with longer duration of the depressive episodes.
In the present study, there was significant correlation between all the stigma domains, except stigma resistance which suggests that stigma resistance could be a different construct as compared to other domains of ISMIS. Similar findings have been reported in studies which have validated ISMIS.,
With regard to participation restriction, about half of the patients in the present study reported restriction in various social, family, community, and job-related activities with severe-to-extreme restriction in participation in one-third of the participants. Similar level of restriction/discrimination has been reported in few studies done among patients with MDD  and in patients with FED. In the present study, participation restriction was strongly associated with stigma in domains of stigma alienation, social withdrawal, and discrimination experience. However, when we compare the findings of the present study with those which have evaluated participation restriction among patients of schizophrenia, bipolar disorder, and RDD, in the present study, significantly lower proportion of patients reported participation restriction. This finding reflects that although patients of FED report higher level of stigma, their functioning is not as hampered as those with long-standing mental illnesses. This finding suggests that persistence of severe mental disorders possibly leads to reduction in self-stigma, whereas the societal discrimination and functioning get more affected, whereas in early phases of illness, it is self-stigma which is more prevalent.
This study has certain limitations which include cross-sectional study design, inclusion of clinic attending patients, inclusion of subjects with clinical remission only, and purposive selection of the patients. Hence, the findings of this study must be interpreted in the background of these limitations and the findings cannot be generalized to community settings and to patients with FED who were not in remission. In addition, the subjects were recruited from those who were under regular follow-up, and there is a high chance that patients with higher level of stigma could have dropped out of treatment after initial visit. The present study also did not attempt to evaluate the association of stigma with medication compliance, social support, knowledge about illness, social functioning, self-esteem, coping, etc. Future attempts must be made to overcome these limitations.
| Conclusions|| |
The present study suggests that internalized stigma is highly prevalent among patients with FED and this is possibly more than that reported by patients with long-standing severe mental illness. Accordingly, there is a need to develop stigma mitigation programs addressing these patients at the earliest to improve their treatment outcome. Clinicians managing these patients should always evaluate the self-stigma experienced by these patients and provide them adequate information about the illness and address their concerns.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]
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