|THEME SECTION: STIGMA IN PSYCHIATRIC DISORDERS: REVIEW ARTICLE
|Year : 2016 | Volume
| Issue : 2 | Page : 134-142
Stigma associated with mental illness: Conceptual issues and focus on stigma perceived by the patients with schizophrenia and their caregivers
Aakansha Singh, Surendra K Mattoo, Sandeep Grover
Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh, India
|Date of Web Publication||25-Apr-2016|
Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh - 160 012
Source of Support: None, Conflict of Interest: None
Among the various psychiatric disorders, schizophrenia is considered to be associated with high level of stigma. The stigmatizing experience is not only limited to the patients but is also experienced by their close relatives. This article reviews the conceptual issues in understanding stigma, mainly in relation to schizophrenia. Further, this article reviews the existing literature in terms of extent and correlates of stigma experienced by patients with schizophrenia and their close relatives. Stigma experienced by the patients can be categorized as public stigma and personal stigma. The personal stigma is further understood as perceived stigma, experienced stigma, and self-stigma. Stigma experienced by caregivers of patients with mental illness is called associative or courtesy stigma and affiliate stigma. A number of tools have been developed for assessment of stigma among patients with mental illnesses and their close relatives. Depending on the type of instrument used to assess stigma, the prevalence of stigma among patients with schizophrenia varied from 6% to 87%. Much of the literature on stigma in the patients with schizophrenia is from developed countries. There is limited literature from India and majority from Southern and Central part of the country. Stigma associated with schizophrenia is highly prevalent across regions and varies according to different sociodemographic and clinical correlates. The experience of stigma among patients of schizophrenia is influenced by the type and severity of psychopathology, insight, coping, causal beliefs, depression, social support, self-esteem, self-efficacy, and self-directness. Stigma influences medication compliance, quality of life, and social functioning. Research is scanty with regard to stigma perceived by caregivers of patients with schizophrenia. Besides the caregiver variables, different patient variables uniquely modify the stigma experienced by the caregivers. Different interventions may reduce the stigma experienced by patients and their caregivers. Studies evaluating stigma experienced by patients with schizophrenia and their caregivers suggest that stigma is highly prevalent among patients and their relatives. Data on correlates of stigma are limited. There is a need for further research on stigma for a better understanding of the concept so as to find ways to reduce it and prevent its adverse consequences.
Keywords: Correlates, schizophrenia, stigma
|How to cite this article:|
Singh A, Mattoo SK, Grover S. Stigma associated with mental illness: Conceptual issues and focus on stigma perceived by the patients with schizophrenia and their caregivers. Indian J Soc Psychiatry 2016;32:134-42
|How to cite this URL:|
Singh A, Mattoo SK, Grover S. Stigma associated with mental illness: Conceptual issues and focus on stigma perceived by the patients with schizophrenia and their caregivers. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 May 19];32:134-42. Available from: http://www.indjsp.org/text.asp?2016/32/2/134/181095
| Introduction|| |
Schizophrenia is a severe mental disorder which usually starts in late adolescence or early adulthood. It is often associated with disability and poor quality of life. Due to the nature of the disorder, people with schizophrenia have to cope with the psychological, cognitive, and biological symptoms of illness; besides these, they have to face negative consequences that come along with stigma associated with the illness. Among the various mental illnesses, evidence suggests that patients with schizophrenia experience more stigma compared to other psychiatric disorders like depression  and eating disorders. The stigma leads to social exclusion, restricted opportunities for employment and education, unsatisfactory, and impaired quality of life. People often avoid the use of services for mental health because of fear of being labeled as a “mental patient” and thus avoid negative consequences connected with the stigma of mental illness. This self-stigmatization causes low self-esteem and discrimination which contributes in failure to pursue work in the society. There is growing evidence of stigmatization of people with mental disorders across the world and experience of stigma vary across different sociocultural contexts.,,,
The negative impact of schizophrenia in the form of stigma is not limited to the patients per se. The caregivers, especially the close relatives also face significant stigma. Goffman  termed the stigma experience of significant others as “courtesy stigma.” The family and friends of people with schizophrenia experience shame and embarrassment along with uncertainty about illness.
For this article, we searched English-language literature from different parts of the world on stigma experienced by patients with schizophrenia and their relatives using PubMed, Ovid, and Google Scholar databases. The search was further narrowed to studies that described the relation of stigma with different sociodemographic and clinical correlates. Available literature was reviewed keeping the scope of the article to review the conceptual issues, experience of stigma, and factors associated with stigma.
| The Concept of Stigma|| |
The term stigma is derived from Greek word “steizen” which means tattooing or branding. In fact, earlier it was used as a visible mark placed or branded on members of tainted groups such as traitors or slaves. By this, every member of the society knew instantly of the degraded status of the stigmatized person. Historically, the term has been defined variously and in relation to mental illnesses. Goffman  defined it as “a deeply discrediting attribute”” that reduces the bearer “from a whole and usual person, to a tainted discounted one.” He further categorized stigmatized attributes into three main groups: i.e., demographic (tribal), for example, race, gender, and age; physical or pertaining to body; and blemishes of individual character, for example, mental illness and criminal conviction. Stafford and Scott  proposed that stigma “is a 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.” Similarly, Elliott et al. in relation to mental illness defined stigma as a form of deviance that leads others to judge an individual as not having legitimacy to participate in a social interaction. This is because of a perception that individuals lack the skills or abilities to carry out such an interaction and are dangerous and unpredictable. These individuals are thus considered beyond social norms and are ignored by rest of the group.
Based on the fact that stigma occurs when the mark links the identified person via attributional processes to undesirable characteristics which discredit him or her, Jones et al. gave six dimensions of stigma which include concealability (how obvious or detectable a characteristic is to others), course (whether the difference is life-long or reversible over time), disruptiveness (the impact of the difference on interpersonal relationships), esthetics (whether the difference elicits a reaction of disgust), unattractive, origin (the causes of the difference, particularly whether the individual is perceived as responsible for this difference), and peril (the degree to which the difference induces feelings of threat or danger in others). Link and Phelan  conceptualized stigma as “the co-occurrence of five components – labeling, stereotyping, separation, status loss, and discrimination” and for this to occur, power must be exercised. They emphasized that no definition of stigma could be universally applicable and laid more stress on societal aspects. They laid stress on two societal aspects, i.e., as a precondition of stigma differences between persons have to be noticed, to be regarded as relevant and to be labelled accordingly. This labeling process forms the basis of Link's modified labeling theory.
Considering the high negative impact of stigma, in 1996, the World Psychiatric Association started the Global Program against Stigma and Discrimination because of schizophrenia. It worked on an operational model of development of stigma and its consequences. According to this, a marker (a visible abnormality or a diagnostic label) allows the identification of a person with the negative contents by association with previous knowledge, information obtained through the media, memories of unpleasant incidents, heard, or seen. This marker thus becomes a stigma and anyone who has it will be stigmatized. The negative discrimination due to stigma amplifies the marker. Thus, the interventions can be done at any stage. This model suggests that stigma can be reduced by reducing the discrimination either by legal means or by removing the visible marker like the extrapyramidal symptoms which appear as side effects of medicines. Similarly, by educating the community about the illness, the negative loading of the marker can be reduced. There are differences in the outcome of the disease in different parts of the world. The chronicity of illness has been found to be a cultural artifact which is based on different cultural values. These collective properties of economic, cultural, social, and physical environments influence the outcome of the disease.
| Types of Stigma Experienced by Patients With Mental Illnesses|| |
The stigma experienced by patients with mental illnesses can be categorized into public stigma and personal stigma. Public stigma is the prejudice endorsed by the general population and manifests as discrimination toward people with mental illness. The personal stigma consists of perceived stigma, experienced stigma, and self-stigma. Perceived stigma is the perception or anticipation of stigma which refers to people's beliefs about attitudes of the general population toward their condition and toward themselves being a member of a potentially stigmatized group. People with mental illness live in a society that stigmatizes them; develop low self-esteem, self-efficacy, and self-confidence. Preexisting cultural stereotypes of these individuals force them to apply these stereotypes to themselves after the onset of illness, which further lowers their self-esteem. Experienced stigma refers to discrimination or restrictions actually met by the affected persons. Self-stigma or internalized stigma of mental illness is the internalization and adoption of stereotypic or stigmatizing views, i.e., of public stigma, by the stigmatized individual. It is a type of identity transformation that might lead to the loss of previously held positive beliefs about the self and yields negative consequences for the person such as diminished self-esteem and self-efficacy. The knowledge about negative opinions on mental illness held by society, patients with mental illness eventually attributes these negative opinions to themselves. They feel discouraged from seeking employment and reinforce their own social isolation to avoid stigmatizing reactions of society. This also diminishes their awareness of their civil rights.
| Measurement of Stigma in Patients|| |
Various scales have been devised to assess the stigma and its various components. The commonly used stigma scales in mental health literature, especially schizophrenia are shown in [Table 1]. Some of these scales are interviewer-based scales (Internalized Stigma of Mental Illness Scale [ISMIS]), whereas others are self-rated scales (Explanatory Model Interview Catalogue Stigma Scale, Questionnaire on Anticipated Discrimination Scale, Stigma Scale). Some of the scales focus specifically on the restrictions in participation in terms of functioning (Participation Scale) and others focus on discrimination domain of stigma (Discrimination and Stigma Scale and Perceived Devaluation Discrimination Scale). Some of the scales measure public stigma (Community Attitude toward the Mentally Illness).
| Extent of Stigma Experienced by Patients With Schizophrenia|| |
Many studies across the world have evaluated stigma experienced by patients with schizophrenia. The findings of these studies have been influenced by the assessment scales used. Use of different scales makes the comparison of the studies difficult and possibly also explains the lack of consistent correlates of stigma in the literature. A review  on stigma perceived by patients with schizophrenia included 54 studies evaluating personal stigma with sample sizes varying from 31 to 1229 participants with a total of 5871 patients. Of these 54 studies, 12 studies evaluated the prevalence of anticipated stigma, 14 evaluated the prevalence of experienced stigma, and 6 evaluated the prevalence of self-stigma. The prevalence rates of anticipated/perceived stigma in these studies ranged from 33.7% in insurance-related structural discrimination  to 80% in interpersonal interactions. Besides this, 64.5% of all patients reported experiencing anticipated/perceived stigma. With respect to experienced stigma, rates ranged from 6% for structural stigma  to 87% for rejection in interpersonal relations. An average of 55.9% patients reportedly encountered stigma. Similarly, review of studies suggests that 52.6% of patients report stigma resistance, 49.2% report alienation (shame), 35.2% report decrement in self-esteem, and 26.8% stereotype endorsement/agreement.
| Comparison of Stigma Experienced by Patients With Schizophrenia With Other Psychiatric Illness|| |
The research on the comparison of stigma experienced by the patients with schizophrenia and other mental disorders is limited. A recent study showed that prevalence of internalized stigma in patients with schizophrenia was 29.4%, compared to 18.5% in patients with bipolar disorder. In a similar multicenter study of schizophrenia and mood disorders in European countries, moderate or high level internalized stigma was reported at 41.7% for schizophrenia and 21.5% for bipolar and depressive disorders. The study concluded that there was a high prevalence of stigma in patients with schizophrenia compared to other psychiatric disorders.
| Stigma Experienced by Caregivers of Patients With Mental Illnesses|| |
Stigma experienced by caregivers of patients with mental illness is called associative or courtesy stigma and affiliate stigma. Associative or courtesy stigma is a process in which a person is stigmatized by virtue of his or her association with another stigmatized individual., Affiliate stigma occurs when the people affiliated to a stigmatized individual such as caregivers, family members, and friends are personally affected by the public stigma that prevails in the society. These associates may develop affiliate stigma and thus feel unhappy and helpless about their affiliation with the stigmatized individual and also feel a negative influence on them. Due to this caregivers tend to conceal their status from others. They withdraw from social relations and alienate themselves from the patients in order to avoid association. Affiliate stigma thus includes both self-stigma and subsequent psychological responses of the associates.
| Correlates of Stigma Experienced by Patients With Schizophrenia|| |
Different studies across the world have evaluated the relationship of stigma with different sociodemographic variables. While some studies show a lack of association between perceived stigma and marital status of the patient, education, age, gender, ethnicity, place of residence, income, and employment  whereas some suggest association of self-stigma with age and male gender. A single study has reported that people following Islam religion have lesser stigma against mental illness. Similarly, young people and those belonging to higher socioeconomic status perceive higher stigma. However, these findings are inconsistent and only few correlates have been reported.
Various symptoms of schizophrenia such as positive symptoms, general psychopathology, depression, and social anxiety are associated with perceived stigma, experienced stigma, and self-stigma. Studies report that negative symptoms are significantly correlated with increased internalized stigma., A recent study supports these findings and reports that while negative symptoms are directly related to self-stigma, positive symptoms had virtually no direct relationship with self-stigma. This could possibly be explained as positive symptoms decrease insight and thus decrease self-stigma. Thus, there is an indirect “protective” effect of positive symptoms against self-stigma.
Different studies suggest that higher perceived stigma is associated with younger age of illness onset, age at first hospitalization,, early phases of illness, higher number of hospitalizations, and duration of illness. The relationship between stigma and insight has been found to be inconsistent. Some studies showed a lack of association between insight and self-stigma  and perceived or experienced stigma,,,, whereas others show a significant correlation between them., A recent study has reported a negative effect of insight on hope, depression, and self-stigma. Similarly, insight into the illness has been found to activate one's proneness to shame thus increasing the self-stigma. Coping strategy of an individual also affects the stigma perceived by the individual. Withdrawal as a coping strategy is associated with higher level of perceived and self-stigma ,, and secrecy has been found to increase the risk of perceived stigma., Similarly, social avoidance as a coping has been linked to higher level of self-stigma. There are some of the psychosocial factors which play a protective role in the development of stigma. Social support plays a protective factor both for perceived stigma  and self-stigma. Similarly, psychological factors such as self-esteem, self-efficacy, and mastery have been reported to be protective factors against perceived or experienced stigma. Studies have reported that hope, empowerment, self-esteem, self-directness, and persistence protect against self-stigma.,,
There is limited literature on the relation of stigma and religion. One such study found no relation between religion and stigma toward patients with mental illness in Arab and Muslim countries.
Causal beliefs among the patients with schizophrenia are considered to be the risk factor for stigma. Karma or evil spirits being considered as a cause of illness have been associated with increased perceived or experienced stigma. Higher numbers of causal beliefs ,, and a lack of spontaneous reporting of causal beliefs have been associated with the higher perception of stigma.
Globally, the literature suggests that around half of patients prescribed antipsychotic medications fail to take them. Stigma has been found to be one of the responsible factors. Different studies rate self-stigma as the strongest predictor of adherence., Studies suggest that improved patients neither want to be considered mentally ill nor want to be seen having any contact with mental health professionals. These individuals may experience hopelessness due to which they undermine the beneficial effects of treatment and lead to nonadherence. Stigma also affects other domains of patient's life. Higher perceived or experienced stigma and self-stigma are associated with lower quality of life  and lower social functioning. Better social and vocational functioning and recovery are considered as a protective against self-stigma.
| Impact of Stigma|| |
Persons with schizophrenia have to cope with their illness as well as the negative consequences of stigma. These negative consequences include social exclusion, unsatisfactory housing, restricted opportunities for employment and education, and a poorer quality of life. People hesitate to use mental health services as they avoid being labeled as a “mental patient.” The self-stigmatization further leads to low self-esteem, low self-efficacy, and a failure to pursue work and household activities. Due to stigma, there is a reluctance for marital relations  and a poorer quality of care for physical illness among people with psychiatric ailments. Perceived/experienced stigma also predict higher depression, more social anxiety, more secrecy, and withdrawal as coping strategies, along with lower quality of life, self-efficacy, self-esteem, social functioning along with lesser support and mastery. The people with schizophrenia tend to blame themselves for having the disease and internalize the guilt and finally isolate themselves in the process. Besides this, due to stigma family members of patient experience shame, embarrassment, psychological suffering, and poor quality of life.
| Stigma Perceived by the Caregivers/family Members|| |
Families play an important role in the management of patients with schizophrenia, particularly in the Indian context. In developing countries still over 60% of patients with schizophrenia live with at least one significant other, i.e., primary caregiver. Caregivers take care of their ill relatives at home, participate in treatment decision-making and rehabilitation. Irrespective of the level of development of a country, caregivers experience high levels of burden., Family members feel stigmatized due to negative stereotypes of mental illness and thus either do not seek or delay seeking help., They prefer to seek help from other nonmental health professionals. In National Alliance for the Mentally Ill, a survey found that 56% of the respondents reported that stigma was experienced by the families of mentally ill persons.
In one of the earliest studies to evaluate stigma in patients and caregivers with schizophrenia, around half of family members reported concealing the hospitalization of their patient. Family members were more likely to conceal the mental illness if the patient was a female, has less severe positive symptoms and if caregivers did not live with their ill relative. The more educated family members with a recent episode of illness, i.e., within past 6 months reported greater avoidance by others.
In a study from Australia, the caregivers reported the experience of stigma similar to that of patients. An Australian study supported these results and found that nearly one-third of the family members were reluctant to tell people about their family members mental illness. Around half of the caregivers reported having experienced offensive attitudes from both general population and media. Similar percentage of caregivers reported that their patients were treated less competent, treated differently, and were advised to lower their expectations when their health professionals found out about their mental illness.
Different studies show a positive correlation between perceived stigma and burden experienced by the caregivers., This perceived stigma in caregivers has been associated with depression,, suicidal thoughts, and the thoughts that the patient would be better off dead.
A study from Sri Lanka reported that reluctance to disclose the illness by the caregivers was a unique predictor of delay in treatment seeking. Overall, this public stigma experienced by caregivers accounted for 20% of the variance in help-seeking delay.
Population-based studies reveal that mental disorders are associated with negative stereotypical characteristics. People with mental disorders are considered to be unpredictable and dangerous, irresponsible, incapable, and child-like. Various studies show a strong evidence of significant relationships between the wish to maintain greater social distance toward those with mental illness and beliefs about unpredictability or the inappropriateness of their social behavior  and dangerousness., The biogenetic causal explanations by the caregivers increase the prejudices and believe in increasing the social distance. Still, the behavior associated with mental illness and the belief that mental illness is a sign of personal weakness have been strongly associated with stigma than the biomedical causal explanation.
| Indian Research on Stigma Related to Schizophrenia|| |
Indian research on stigma is restricted to a handful of studies in relation to schizophrenia. As a part of the World Psychiatric Association's Program to reduce the stigma and discrimination because of schizophrenia, a study on 1000 patients with schizophrenia was conducted in four cities in South India. While rural respondents in smaller regions experience greater ridicule, shame, and discrimination, as anonymity was more difficult in a rural background, urban respondents in large centers tend to hide their illness so as to remain unnoticed.
A study from Bengaluru reported that while urban participants reported the need to hide their illness and avoided giving illness details in job applications, rural participants experienced more ridicule, shame, and discrimination. Men experienced shame, difficulties in getting married, and hide their illness in job applications, whereas women experienced stigma related to marriage, pregnancy, and childbirth. Both men and women reported different cultural myths about their illnesses and negative effect of these myths on their illness., Stigma has been associated with insight and patients with better insight were found to perceive more stigma compared to those with poor insight.
An Indian study  reported a lower level of stigma in occupational settings, and the least amount of stigma was reported in marital life. In this study, behavioral symptoms associated with schizophrenia were thought to be a cause of stigma while almost all believed that stigma was caused by a lack of awareness about schizophrenia. Patients reported being avoided due to their illness, discrimination faced in the family, being a victim of offensive comments about mental illness besides discrimination at the workplace. Around half of the patients reported problems coping with their marriage and not receiving proposals for marriage due to their illness. A recent qualitative study  showed that patients with schizophrenia reported that people with schizophrenia experience higher internalized stigma in the form of sense of alienation (79%) when compared to negative discrimination (42%). Discrimination experience was predicted by more severe positive symptoms and less severe negative symptoms of schizophrenia, higher caregiver knowledge about symptomatology and younger age.
A study by Raguram et al. which involved caregivers reported that illness had negative impact on work, finances, and social interactions.
In India, stigma has been related to specific beliefs about causes of mental illness. Stigma has been associated with external nonstigmatizing beliefs about illness (karma and evil spirits), the disease model of illness, the total number of causal models, total number of nonmedical causal beliefs, visiting the temple or other place of worship for cure, total family stigma score, and the relatives' perception of stigma on the patient. The nature of determinants and consequences of stigma have been found to vary across culture and region. Jadhav et al. found that rural Indian patients, especially those with a manual occupation showed significantly higher stigma scores, while urban Indians showed a strong link between stigma and unwillingness to work with a mentally ill individual. A recent study showed an association of stigma with multidimensional poverty. A recent study validated the Hindi version of ISMIS among patients with severe mental illness in North India, and factor analysis of ISMIS yielded five factors, which had significant overlap with the five domains of the original scale.
When stigma perceived by caregivers of patients with schizophrenia was evaluated in a study done by Thara and Srinivasan  around one-third of the caregivers reported experiencing “high” stigma while others were classified as “low” stigma group. Stigma was more in Hindus when patient was a female, primary caregiver was female, and duration of illness was shorter. The authors found that the primary caregivers who had no explanation to offer for the illness reported higher levels of stigma than those who had attributed some definite factors to be responsible for the illness. “High stigma” was associated with patient being female, patient or caregiver being younger, and attribution of illness to “no explanation,” “character or lifestyle,” “substance abuse,” “problems in intimate interpersonal relationships,” and “faulty biological functioning.”
The caregivers in Indian context reported concerns about the social impact of the illness on the affected person, with difficulties for this person in marrying, problems in an existing marriage, social devaluation, and avoidance by other.
| Dealing With Stigma|| |
The people with mental illness like schizophrenia often internalize the guilt and blame for having the disease and are likely to be disposed to isolate themselves in the process. The various interventions to deal with stigma have been classified as individual level interventions, community level interventions, and structural interventions. The first and foremost intervention in this regard at the individual level is treating the mental illness adequately. Experience from physical illnesses suggests that effective treatment for a particular illness reduces stigma. Counseling based on improving the coping and self-esteem has been found useful for patients. Studies suggest that cognitive behavior therapy is an effective strategy in dealing with consequences of self-stigma. Cognitive behavior therapy includes education about, symptoms, and stress management strategies along with cognitive challenges to change negative beliefs. Similarly, rehabilitation of patients with schizophrenia can improve their lives and reduce the stigma of the illness. The community level interventions include increasing the knowledge about illness and addressing stigma within specific community groups. Community development skills can be developed by developing support networks and providing better access to services for affected people. Finally, the structural level interventions include the development of new policies within the organizations like at government level or a private organization level which will target stigma-related aspects of an organization.
| Conclusion|| |
Studies from different parts of the world suggest that stigma is highly prevalent among patients with schizophrenia and their caregivers. Stigma differs according to different patients', caregivers', and sociocultural variables and has different socioccupational consequences. Surprisingly, there are very few studies on stigma from developing countries like India. However, the little available data suggest that schizophrenia is highly stigmatizing in India too. There is a need for further research on stigma to have better understanding and identification of determinants which might suggest ways to reduce stigma and help to prevent its adverse consequences. This will help in understanding stigma experienced by patients and caregivers of schizophrenia and formulating strategies in reducing stigma and resultant treatment barrier.
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