|Year : 2018 | Volume
| Issue : 2 | Page : 93-100
Research progress in the understanding and implications of stigma related to mental health
Amresh Shrivastava1, Avinash De Sousa2, Pragya Lodha3
1 Department of Psychiatry, The Western University, Lawson Health Research Institute, London, Ontario, Canada
2 Department of Psychiatry, Lokmanya Tilak Municipal Medical College, Mumbai, Maharashtra, India
3 Desousa Foundation, Mumbai, Maharashtra, India
|Date of Web Publication||30-Nov-2018|
Avinash De Sousa
Carmel, 18, St. Francis Road, Off S. V. Road, Santacruz West, Mumbai - 400 054, Maharashtra
Source of Support: None, Conflict of Interest: None
Stigma is neither new nor an isolated condition for people suffering from mental as well as physical disorders. It is regrettable that scientists, researcher, philosophers, and community leaders have been silent for a long time in recognizing and dealing with it. However, during the past 20–30 years, significant progress has taken place in stigma research, the world over including India. From research done in India, there is clear evidence that: stigma is not merely a social condition. Convergence of social, mental, and physical disorders around stigma has far-reaching consequences on risk and health outcomes. The present paper looks at the position of stigma in mental health from an Indian perspective. The research done on stigma in India is reviewed, and certain recommendation for the management and eradication of stigma are elucidated. Stigma in specific conditions such as schizophrenia, substance abuse, and child sexual abuse are also addressed. The WHO guidelines and Mayo clinic guidelines to eradicate are used as a basis to be applicable to the Indian scenario. We examine how a life of an individual is affected with stigma, how mental health advancement has changed or not changed negative impact of stigma on patients and finally how stigma is measured and minimized, mainly for work done in India.
Keywords: Mental health, mental illness, stigma-based intervention stigma
|How to cite this article:|
Shrivastava A, Sousa AD, Lodha P. Research progress in the understanding and implications of stigma related to mental health. Ann Indian Psychiatry 2018;2:93-100
|How to cite this URL:|
Shrivastava A, Sousa AD, Lodha P. Research progress in the understanding and implications of stigma related to mental health. Ann Indian Psychiatry [serial online] 2018 [cited 2021 Nov 29];2:93-100. Available from: https://www.anip.co.in/text.asp?2018/2/2/93/246533
| Introduction|| |
The presence of stigma surrounding mental illness is universal and seen across all cultures. The conceptualization of stigma has changed over time and has been defined as an objective characteristic of an individual that leads to a negative valued social identity. Stigma is also a risk factor for worsening of mental illness, suicide violent behavior in the patient, and lack of self-care. Family members of patients also experience stigma as they are often stakeholders and partners in care. It has been shown that stigma causes discrimination due to prejudice and is, in fact, a predictive factor for outcome and level of functioning. Continued stigma can cause severe direct disability and indirect economic implications while reducing stigma may represent a cost-effective way to lower relapse and poor outcomes very often due to an exposure to stigmatizing environments.
Stigma related to both mental and physical disorders have been described in all societies and cultures, including in India. It has been documented in Indian research about medical illness like leprosy, HIV and skin diseases. Mental health has always been in the web of stigma postindependence. Stigma is one of the main barriers for treatment of mental disorders and reluctance to seek treatment leads to life-threatening consequences such as suicide, violence, and deterioration in physical health. Lack of compliance has been the issue that bogs down a cure for mental illness in India. In this paper, we aim to present the progress in stigma and mental health-related research in India in the past 50–60 years.
| Stigma and Mental Health|| |
Stigma is the most critical barrier to quality of life of mental health consumers and family members, more so than the illness itself and a significant impediment to mental health reform and development. Consequences of stigma such as unemployment, lack of housing, diminished self-esteem, and weak social support can be significant obstacles to recovery, influence long-term prognosis, and promote disability. Besides disruption in the family, the isolation of the patients and discrimination in social life, one of the most important consequence is the human right violation. A newspaper report mentioned that a 17-year-old mentally ill girl was kept captive in the flat for at least 1 year. The girl's mother who lived close by with another daughter, came to the house twice a day to give the girl food. She would get water only once a day, along with sleeping pills to put her off to sleep. Such are the long-term implications of stigma. This is the situation in 2016–2017, about 17 years after the World Psychiatric Association (WPA) launched its anti-stigma program and India was one of the partners. Distinguished Professor N. N. Wig was the Chair of the steering committee, and Prof. Dr. R. Srinivasa Murthy from the National Institute of Mental Health and Neurosciences spearheaded the research and community program of WPA-WHO. On August 6, 1999, “Open the Doors” was launched at the 11th World Congress of Psychiatry in Hamburg.
The stigma of mental illness is so severe that in the most advanced, prosperous and popular metropolitan city of India, i.e., in Mumbai, there is a shortage of beds for psychiatry patients and no private corporate hospital has a psychiatric ward. They fear their reputation more than a risk for suicide or violence. Their general perception is that patients of other medical specialties would not like to be in a room with a psychiatric patient when they come for surgical or medical treatment. There cannot be a ruder and more arrogant response to mental illness in a society wherein 20% of people suffer from a psychiatric disorder, and there is not enough resource in the system. Late treatment compromises the outcome of psychiatric disorders. There is evidence that longer duration of untreated mental illness or psychosis affects the outcome and this is true for even first episode psychosis.,, When people have access to early treatment and ongoing support, the likelihood of recovery increases significantly. The stigma that leads to lack of access to care leads to hopelessness, despair, isolation, and a sense of inferiority among the mentally distressed and they relapse which leads to undoing all the efforts that patients and psychiatrists have made for years to foster recovery.
| The Media and Stigma|| |
In India, the context of media cannot be discussed without their role and responsibility for psychiatry. It is a double-edged sword. We often say that media is not proactive and not interested in highlighting stigma and consequently contributes to increasing the stigma further. When media takes an interest, it is often said that it blows the issue out of proportion. Media is a partner and stakeholder in a fight against stigma. In every city, and town, mental health organizations need to sensitize people and discuss the life of an individual suffering from mental disorder and use media coverage for the same. Role of media is regarded as one of the most divine interventions and pathway for prevention of psychiatric disorders and reduction of stigma.
Many studies have found that media and the entertainment industry play a key role in shaping public opinions about mental health and illness. People with psychiatric conditions are often depicted as dangerous, violent, and unpredictable. News stories that sensationalize violent acts by a person with a mental health condition are generally featured as headline news; while there are fewer articles that feature stories of recovery or positive news concerning the same individuals. Entertainment frequently features negative images and stereotypes about mental health conditions, and these portrayals have been strongly linked to the development of fears and misunderstanding.
| Method of Conducting This Review|| |
Articles that assessed stigma, stigma in relation to mental health in India were identified through searches of the PubMed, EMBASE, and Google Scholar databases along with the websites of the Indian Journal of Psychiatry and Indian Journal of Psychological Medicine. The websites were searched for articles published in English between August 1947 and January 2018. The search combined the terms stigma, mental health, discrimination, prejudice, challenges due to stigma, stigma and mental health in India and stigma based interventions in India. Additional articles were identified by a manual search of the reference lists of the identified articles and book chapters or review articles obtained. Abstracts and posters from conferences and meetings were not included in this review. The authors reviewed the identified studies and were able to determine important challenges and progress made in stigma research in India. These are discussed in the current paper interspersed with the author's sound clinical experience in working with psychiatric patients and their experiences of the stigma faced by their patients and caregivers. Stigma faced by mental health professionals and psychiatry as a specialty has not been discussed as the focus in people suffering from psychiatric disorders rather than mental health as a subject alone. We found over 700 publications related to stigma (most of which was post 1995). The most relevant and significant ones for India were chosen for inclusion in this review. This was decided by all the authors who went through the papers and decided on the same based on the type of research conducted, nature of review if a review paper and relevance to the current article. The number of publications related to stigma and mental health has risen 8-fold from 2002 to 2017. This is parallel to international trend in stigma research seen since 1996.
| Stigma– Definition and Concept|| |
Stigma is another term for prejudice based on negative stereotyping. The clear inference is that the “negative” aspect reflects not only unfavorable stereotypes but also the negative attitudes and adverse behavior of the stigmatiser. Clausen saw stigma as “a buzzword, arousing more emotional reaction than words such as devaluation and discrimination.”,
Stigma was exacerbated by the 19th century separation of the mental health treatment system from the mainstream of healthcare. However, stigma originates from multiple sources, which work in a synergistic manner and have serious implications on an individual's life. We believe it may originate from personal, social and family sources, and from the nature of the illness itself. Several studies show that stigma usually arises from lack of awareness, lack of education, lack of perception, and the nature and complications of the mental illness, for example, odd behaviors and violence.
| Stigma and Psychiatric Disorders- Indian Research|| |
Stigma has been shown to lead to complete social devaluation of a person who suffers from psychiatric disorders. This discrimination leads to disadvantages in many aspects of life including personal relationships, education, social life and work. Psychiatric patients plagued with stigma may thus lose self-esteem and harbor feelings of shame, social withdrawal, guilt and a sense of alienation. Thus, patients with psychiatric disorders may expect to be treated in a negative and discriminatory way and may hide their illness or refuse from taking up opportunities for treatment and recovery.
Across cultures, the meanings, practices and outcomes of stigma differ, even when we find stigmatization to be a powerful and often preferred response to illness, disability, and difference. Large number of stigma and mental health research has been done in the west and research is needed to understand which aspects of the experience of stigma are most common and burdensome in the Indian context.
Studies on stigma in India started in the 1980s, but recent research has illustrated high levels of stigmatizing attitudes toward patients with mental illness among community members and health staff. The effect of stigma on help-seeking and compliance along with recover and other aspects of health has been shown to be high. One study reported that people with psychiatric problems were ridiculed, avoided, or looked down on. They were also given no food or stale food, stopped from leaving the house, chained, tied up, and beaten or hit with stones. They were subject to ridicule and lack of respect from family members. Males with psychiatric problems experienced stigma regarding employment and earning while women in India experience the same about marriage, childbirth and for just being from the female gender.
Other research has yielded information that stigmatizing reactions were often enacted by family members and neighbours. In a study that had 76 women with schizophrenia whose marriages had broken, qualitative methods were used to assess and gather information about stigma. Most were abandoned by their husbands and very few received financial support while others experienced beating, domestic violence, emotional torture, and neglect. Many felt themselves as a burden to their own parents, and received hostility from family members and their spouse.
Little is known about the determinants of subjective experiences of stigma associated with in India and very little qualitative research has been done in this direction. Research from India on the association of stigma in mental illness across diverse income groups is poor and yields no conclusive results. The importance of the nature of the mental illness, symptoms, diagnosis and aggression, and violent behaviors in determining social reactions has been studied. Stigma in India which is a land of diverse cultures must be understood in different cultural contexts and in the context of what is at stake or rather what matters most. No studies so far have examined stigma in India specifically from this perspective.
Hindu philosophy, which has been influential on Indian society across religious groups, holds that doing one's duty in life (living in accordance with “Dharma”) is central to a moral life and that living by the ways of conduct described by Dharma (i.e., meeting social role expectations and codes of behavior) will lead to purification of mind and ultimately, Moksha (liberation). Furthermore, it is necessary to consider that aims such as employment hold added importance in India with minimal welfare provisions, where loss of income from mental illness may constitute an existential threat to the family. This is paramount in young adults where mental illness takes away the most productive years of their lives. Many patients in India are sole bread winners and cost-effective treatments with minimal loss of work days may not be available due to the nature of the illness. Unemployment and underachievement at work or academically pose huge threats to a man's social status while remaining unmarried is a huge stigma for women.
A number of studies discuss the specific importance of marriage in Indian society: as a desired outcome, an economic necessity, a social role expectation, and a potential ‘cure’ for mental illness. In one study, women with schizophrenia and broken marriages perceived the loss of social status associated with a broken marriage as more burdensome than even the stigma associated with their mental illness.
In one study, four members affected with mental illness from a family were reported to the psychiatric hospital with the help of a voluntary organization. All were suffering from chronic schizophrenia and malnutrition. The assessments revealed that the family was facing serious discrimination in the village; neighbors were not coming home, children threw stones to the home and people considered the family was under the attack of evil spirits. All the family members were deprived of their basic needs such as food, water, and social living. Other than giving hospital-based treatment for the family members affected with mental illness, availing disability benefits, and rehabilitating the persons, the psychiatric social work team organized 1 day community-based intervention program targeting knowledge and attitude of community members toward mental illness. The key elements of community-based intervention were home visits, one-to-one interaction, collaborative work with local governing bodies, street play, experience sharing by a person affected with mental illness, display and distribution of information, education and communication material, interactive sessions, and oath taking. The community-based intervention could bring changes in the stigma, reduced discrimination and increased social acceptance and social support of the family members.
Mental health professionals are aware of the harmful effect of stigma against mental illness. Indian mental health professionals have conducted many studies on the attitude of the general public toward mental illness and in the process, have developed special psychological research instruments suitable for attitudinal studies in our population. One of the earliest scales questionnaires developed was culture-specific, valid, and reliable, along with the development of socioculturally relevant vignettes stories. In an early review on the subject, the author states that “The general trend of the studies carried out in India indicate that the lay public including the educated urban groups are largely uninformed about the various aspects of mental health. The mentally ill are perceived as aggressive, violent, and dangerous. There is a lack of awareness about the available facilities to treat the mentally ill and pervasive defeatism exists about the possible outcome after therapy. There is a tendency to maintain social distance from the mentally ill and to reject them.”
Different illnesses may cause different emotional reactions in patients and caregivers. Most physical illnesses such as a fracture or heart disease or even cancer cause a feeling of sympathy for the victim. Some other communicable diseases such as tuberculosis or plague cause fear of catching the infection from the sufferer while leprosy with its ugly open sores causes a feeling of disgust. One early review mentions that “mental illness is usually perceived as something strange, mysterious and also dangerous. It is probably due to the difficulty in communicating with persons having mental illness and a certain unpredictability about their behavior. Such discrimination is usually based on unfounded, irrational misconceptions about mental illness”. The common man has a general concept of mental illness where mental illness is equated with being mad or insane and there is no knowledge of the various categories of psychiatric disorders that may vary from depression and panic disorder to dementia, substance abuse, and schizophrenia. Research reports maximum prejudice faced in India faced by patients with schizophrenia. Ignorance or lack of proper knowledge is the root cause of all stigma. Perhaps one of the strongest prejudices against mental illness is the fear of violence by the mentally ill, despite poor scientific evidence.
Recent research has mentioned that “mental disorders and violence are closely linked within public mind. A combination of factors promotes this perception including the sensational reporting by media, whenever a violent act is committed by a former mental patient, popular misuse of psychiatric terms (such as “psycho” or “psychopathic”) and exploitation of stock formulas and narrow stereotypes by the entertainment industry”. Mental illness has always been reported as something to ridicule, something to laugh atone which is bizarre, disgusting, or frightening. However, the current trends point towards the opposite with media being supportive of mental health and the mentally ill in recent years.
| Summary of the Major Research Findings|| |
Reviews on attitudes toward mental illness summarized some recent findings:
- People are currently better informed about mental illness. The public's ability to label a broader range of behavior as mental illness has also increased. However, even though mental illness seems to be accepted as an illness like any other, people's feelings about it are not consistently shaped by this cognitive awareness
- Factors in the patients that influence public attitude include frequency of actual or anticipated behavioral events; extent to which violence is an issue; intensity of the behavior; visibility in the open community and geographic location; the degree of unpredictability; and the loss of accountability
- Factors in the respondents are also important in shaping attitudes. Older age, lower socioeconomic status and lower educational level are associated with greater intolerance and rejection of the mentally ill. Among the relatives of patients, the lower the socioeconomic class, the greater the feelings of fear and resentment, whereas the higher the socioeconomic class, the greater the feelings of shame and guilt
- Factors in the social context also contribute in forming community perception. The availability and accessibility of psychiatric services together with the level of familiarity with such services in the community would influence social acceptability of mental illness
- Even taking into account the inadequacy of delivery of mental healthcare services in many countries, there is still general reluctance in seeking psychiatric care. People would choose friends, family doctor, relatives, or clergymen before resorting to professional psychiatric services
- Stigma may be real or perceived (i.e., fear of stigmatization by the patient and family). Fear of rejection, self-doubts, concealment and withdrawal can be far more significant barriers to full social reintegration than the stigma associated with negative public attitudes
- There exist more supernatural, religious, moralistic and magical approaches to illness and behavior. While they may confer strong stigmain some cultures, they may not in others (e.g., the sufferer may not be blamed for an external cause and the course is expected to be brief)
- Stigma can only be eradicated by public education– we must make people and patient's as well as their caregivers aware at both an individual and community level. This also includes increasing awareness among fellow medical and healthcare professionals.
| Stigma and Substance Abuse in India|| |
There have been studies that have reported that people who abuse substances in recovery face stigma in its various forms, including enacted, perceived, and self-stigma. Enacted stigma is the directly experienced social discrimination such as difficulty in obtaining employment, reduced access to housing, poor support and interpersonal rejection. Perceived stigma are the beliefs that members of a stigmatized group have about stigmatizing attitudes and actions in society. Self-stigma is the negative thoughts and feelings that emerge from identification with a stigmatized group and their behavioral impact like avoidance of treatment, failure to search for employment, etc. This stigma in India has been linked to negative outcomes such as unemployment and difficulty in social adjustment. Many patients self-report fear of stigma as a reason for not seeking treatment.
| Stigma and Child Sexual Abuse in India|| |
Child sexual abuse in India has reached endemic proportions and the number of cases reported every year is on the rise. The problem is looked at as a taboo in India. Many victims and their families remain quiet about child sexual abuse. There is a fear of indignity, denial from the community, social stigma and lack of faith in government bodies, police, and the judiciary. There is also a major lack of communication between parents and children about sexual abuse and no education at home is done from a preventive point of view. Majority of the medical professionals and pediatricians as well as child psychiatrists do not have the expertise to examine and manage cases of sexual abuse. There is also a dearth of rehabilitation centres and homes for victims of child sexual abuse that adds to the woes. Cases are not reported and are settled within the institution or schools. Another concern in India is the execution of laws and initiatives in India is a challenge and there is lack of funding for programs for child safety.
| Stigma-Based Interventions in India|| |
The important question remains how mental health professionals can reduce the stigma against mental illness in the minds of the public. This is important because our future as a specialty depends on it. It is well known that the root cause of all stigma and prejudice is ignorance and lack of proper scientific knowledge. We must use the knowledge we have in the public domain along with scientific advances in treatment to dispel the atmosphere of grayness and change the feeling of incurability of mental disorders. A rational and achievable concept of cure must be suggested. We also need to remember that stigma associated with medical disorders like tuberculosis and leprosy have been gradually overcome through public education and winning over public trust. The lack of investment in mental health services in India has been attributed to scarcity of funding and a disinterest of public health authorities in mental illnesses. Therefore, understanding stigma both at the community and the institutional decision-making level and alleviating it is a fundamental step to improving mental health services and policy in India.
There are three important targets for combating stigma, namely, interventions for the general public; intervention for improving image of psychiatry; and interventions for dealing with stigmatizing by psychiatrists. It is best to deal with stigma on a one-to-one basis that allows for superior communication between the mental health professional and the patient. Only then can the mental health professional assess for qualitative change in the patient's life.
There is a need to make psychiatry a household name, and we must take mental health education to the masses. The psychiatrist of the future has to move away from his clinic and into the environment breaking the stern garb perceived to be worn by psychiatrists. Mental health awareness interventions at all levels in schools, colleges, parents, teachers, offices, and industry as well as general lectures for the common man shall go a long way to combat stigma and end discrimination.
Imparting education that mental illnesses are biological generates hope that the etiology has been known while one and people may compare it brain diseases that have no hope of recovery like mental retardation. It has been a hope that psychiatrists can play a central role in the prevention of stigmatization of psychiatry by stressing the need to develop a respectful relationship with patients, to strictly observe ethical rules in the practice of psychiatry, and to maintain professional competence. More interventions aimed at modifying the views held about psychiatry, mental illness and psychiatrists by health and medical professionals are required. The negative image held by psychiatry which is often cultivated by medical specialties in medical school and continue into residency must change. Medical students must have an accurate picture of psychiatry as a discipline. Practice-oriented seminars for family physicians, informing them not only about mental illness but also psychiatric facilities and treatments they can offer at a grass root level is a must.
Measures to reduce stigma have been developed on large scales and an individual level. In 1996, in recognition of the particularly harsh burden caused by the stigma associated with schizophrenia, the WPA initiated a global anti-stigma program, “Open-the-Doors” with a broader mandate to reduce stigma and discrimination caused by mental disabilities in general. A study we carried out in Mumbai highlighted the patient's opinions to be the most important focus in dealing with stigma. It recommended investigating a number of issues, namely, relapse prevention (88%); complete treatment (85%); educating the community (83%) rehabilitation (81%); early identification (77%); and social integration (65%).
The Mayo Clinic has developed guidelines in dealing with stigma for patients and relatives. They provide guidelines for reducing the impact of stigma and psychosis, paraphrased here:
- Get treatment to provide relief from the symptoms that contribute to the stigmatizing behaviors
- Do not allow for the stigma to create self-doubt and shame. Sometimes mistaken beliefs can interfere with a proper evaluation of the condition
- Do not isolate yourself. This will only produce more stigma as symptoms would most likely be more poorly controlled
- Do not equate yourself with your illness. You are not defined by your illness
- You have an illness that requires management. This simple suggestion prevents a patient from addressing himself as a schizophrenic first and a person second
- Join support groups that can provide coping strategies for dealing with stigma as they may actively fight against stigma
- Get help at school. Talk to teachers, professors or administrators about the best approach and available resources. If a teacher does not know about a student's disability, it can lead to discrimination, barriers to learning and poor grades.
| Recommendations to Eradicate Stigma|| |
The WPA in a seminal paper has come up with guidelines that shall help eradicate stigma and can be followed by both developing and developed nations:
- National psychiatric organizations should define best practices of psychiatry and actively pursue their application in the mental health care system
- National psychiatric organizations, in collaboration with relevant academic institutions, should revise the curricula for undergraduate and postgraduate medical training
- National psychiatric societies should establish closer links and collaboration with other professional societies, with patient and family associations and with other organizations that can be involved in the provision of mental health care and the rehabilitation of the mentally ill
- National psychiatric societies should seek to establish and maintain sound working relationships with the media
- Psychiatrists must be aware that their behavior can contribute to the stigmatization of psychiatry as a discipline and of themselves as its representatives.
| Conclusions|| |
Stigma leads to discrimination, isolates people, and finally, reduces opportunity and willingness to seek treatment. It is clearly known that stigma is a clinical risk, causes a barrier to treatment and also results in noncompliance. It is possible that stigma reduces a mentally ill person's motivation and readiness to seek therapy. Individuals with mental illness may seek to avoid the negative feelings of shame and guilt about themselves and thus not seek treatment. Dealing with stigma is the first step in the treatment and prevention of mental illness. It is best to deal with Stigma on a one-to-one basis that allows for superior communication between the mental health professional and the patient. Only then can the mental health professional assess for qualitative change in the patient's life. The basic requirement for dealing with an individual's stigma perception/experience is proper assessment of the origin, and impact, of stigma, in both a qualitative and quantitative manner. There is also a need for research into various facets of stigma across different states in India to understand the local and cultural systems at play while we take steps to eradicate stigma.
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Conflicts of interest
There are no conflicts of interest.
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