|THEME SECTION: STIGMA IN PSYCHIATRIC DISORDERS: PERSPECTIVE
|Year : 2016 | Volume
| Issue : 2 | Page : 115-119
Stigma toward psychiatric disorders - National and International perspectives
Roy Abraham Kallivayalil, Arun Enara
Department of Psychiatry, Pushpagiri Institute of Medical Sciences, Tiruvalla, Kerala, India
|Date of Web Publication||25-Apr-2016|
Dr. Roy Abraham Kallivayalil
Department of Psychiatry, Pushpagiri Institute of Medical Sciences, Tiruvalla, Kerala
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Kallivayalil RA, Enara A. Stigma toward psychiatric disorders - National and International perspectives. Indian J Soc Psychiatry 2016;32:115-9
|How to cite this URL:|
Kallivayalil RA, Enara A. Stigma toward psychiatric disorders - National and International perspectives. Indian J Soc Psychiatry [serial online] 2016 [cited 2019 Dec 11];32:115-9. Available from: http://www.indjsp.org/text.asp?2016/32/2/115/181096
”Tendency to melancholy is a misfortune, not a fault” (Abraham Lincoln in a letter to Sarah Speed-1841).
Stigma is that situation of the individual who is disqualified from full social acceptance. It suggests disgrace or defeat. The word stigma was referred originally to a mark on slaves, to help separate them from free men. Stigma also indicates a tattoo or mark that is used for decorative or religious purposes, or for utilitarian reasons, often placed on criminals or slaves, to identify them if they ran away and to indicate their inferior social position. Goffman defined stigma as “an attribute that is deeply discrediting” and that reduces the bearer from “a whole and usual person to a tainted, discounted one.” Such attributes included physical deformities, “blemishes of individual character” or “tribal stigma of race, nation, and religion.” Goffman suggested mental illness as one of the most deeply discrediting and socially damaging of all stigmas, such that people with mental illnesses start out with rights and relationships, but end up with little of either. From this original focus on stigma as a byproduct of the social organization of psychiatry, contemporary social theorists have taken a much broader and ecological view. This view recognizes the complex interplay of social, structural, interpersonal and psychological factors in the creation and maintenance of stigma.
Stigma is often pervasive and resistant to change. Most references to mental illness are used in a negative and insulting way. This demonstrates and reinforces a negative view of the mentally ill. Such a negative view, which mental health professionals often refer to as “stigmatization,” adds to the undoubted burdens of mental illness and contributes to social and psychological dysfunction.
Link and Phelan in 2001 suggested that stigma exists when a person is identified by a label that sets the person apart and links the person to undesirable stereotypes that result in unfair treatment and discrimination. Stigma is also seen as a term that encompasses three elements: Problems of knowledge (ignorance), problems of attitudes (prejudice), and problems of behavior (discrimination).
In the last decade, public health interest in both the burden of mental illness and the hidden burden of mental health-related stigma has grown. The interest generated on this malady may largely be credited to international organizations such as the World Health Organization, the World Psychiatric Association (WPA), the World Association for Social Psychiatry and many nongovernmental organizations (NGOs). They have recognized stigma as a major public health challenge. There is also a growing support for stigma reduction. This is evident in the number of government declarations, mental health system reviews, and action plans which highlight the disabling effects of stigma, and the need for reducing discrimination.
| Stigma – Origins, Causes, and Maintenance|| |
Stigma generation is a complex process, which results from the interplay of multiple factors. There is no unified or single theory that suggests a single explanation to the generation of stigma. It often represents a complex interaction between social science, politics, history, psychology, medicine, and anthropology.
Jones et al. in 1984 suggested the following factors that generated stigma:
- Attribution of responsibility/origin
- Poor prognosis/reversibility
- Disruption of social interaction
One of the key steps in the generation of stigma is the perception of difference. The ability to notice differences is inherent in all living forms. Such differences to cause stigmatization must be linked to undesirable traits. Stigma to mental illness often lies with the association of mental illness with the stereotypes of potential violence, communication problems, and unpredictability. These differences often result in the “us” and “them” connotations.
The stigmatized group often lacks the power and their social status decreases owing to a combination of overt and less obvious mechanisms. These factors were called on by Sartorius as “vicious cycles” of stigma [Figure 1].
Many psychological theories made us understand how cognitive and attributional processes at the social and psychological levels lead to the development and maintenance of the negative and erroneous stereotypes of stigmatizing views. Attribution theory, in particular, provides a framework for understanding stigma. Attribution theory traces a path from a signaling event (a label) to an attribution (or stereotype), to an emotion (negative), and finally to a behavioral response (discrimination). In theory, it is possible to replace incorrect attributions to reduce stigma and discrimination. However, it has not been completely possible to definitely link improvements in knowledge or attitude to behavioral changes.
| Components of Stigma|| |
Brockington et al., Corrigan and Miller, and Farina  have frequently cited three main components of stigma. These were authoritarianism, fear and exclusion, and benevolence.
Authoritarianism often leads to the view that people with stigmatizing mental illness are irresponsible and incapable of taking care of themselves. This leads to the conclusion that others should control them and make decisions for them.
Fear and exclusion lead to isolation of the individuals with stigmatizing mental illness from the community. This results from the belief that the individuals with stigmatizing mental illness are dangerous.
Benevolence results in the view that persons with stigmatizing mental illness are innocent and naïve, and others should care for them. Of the three components, benevolence may often be viewed as the least harmful of the three, but research indicates that it results in anger and annoyance.
| National and International Perspectives on Stigma|| |
Stigma and discrimination are not limited to mental illness. Many physical medical conditions such as HIV/AIDS and obesity are often faced with similar challenges as in stigmatizing mental illness. Most studies suggest that people with mental health problems suffer higher stigmatization and discrimination in several areas of their life including social relationships and employment. Civil society is often inclined to hold people with mental disorders responsible and accountable for their condition and is less sympathetic to them. These ensuing negative attitudes often result in discriminatory behaviors.
Thornicroft et al. suggested stigma of mental illness to be arising from the following three issues:
- Problems of knowledge – ignorance
- Problems of attitudes – prejudice
- Problems of behavior – discrimination.
A large volume of previous studies on the stigma of mental illness implicated that it occurs more often in Western societies. However, more recently, the World Health Organization (WHO) suggested that stigma of mental illness equally affects Western and Asian communities alike.
Major international studies suggest that schizophrenia has a better prognosis in low-income nations and in rural settings. Stigma is often widely endorsed in the western world, less evident in Asian and African countries, and almost nonexistent in Islamic countries.
Thornicroft et al. in 2009 conducted a cross-sectional survey in 27 countries with the aim to describe the nature, direction, and severity of anticipated and experienced discrimination reported by people with schizophrenia by the use of face-to-face interviews with 732 participants. Discrimination was measured with the newly validated discrimination and stigma scale, which produces three subscores: Positive experienced discrimination; negative experienced discrimination; and anticipated discrimination. The study reported negative discrimination to be experienced by 344 (47%) of 729 participants in making or keeping friends, by 315 (43%) of 728 from family members, by 209 (29%) of 724 in finding a job, 215 (29%) of 730 in keeping a job, and by 196 (27%) of 724 in intimate, or sexual relationships. Positive experienced discrimination was rare. Anticipated discrimination affected 469 (64%) in applying for work, training, or education, and 402 (55%) looking for a close relationship; 526 (72%) felt the need to conceal their diagnosis. Over one-third of participants anticipated discrimination for job seeking and close personal relationships when no discrimination was experienced.
Research at (NIMHANS), Bengaluru by Raguram and Weiss1996 focused on the cultural dimension and cross-cultural comparison of stigma related to depression. The study measured illness experience, symptom prominence, and indicators of stigma among 80 outpatients from urban backgrounds using the explanatory model interview catalog. In addition, patients were clinically assessed on the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders-Third Edition, Revised Edition (DSM) and the Hamilton Depressive Rating Scale. The study found that persons presenting with a somatic form of depression are less stigmatized than those with psychological symptoms.
Thara and Srinivasan  at the Schizophrenia Research Foundation in Chennai examined perceptions of stigma among caregivers in a sample of 159 urban patients attending the outpatient clinic and fulfilling DSM-IV criteria for schizophrenia. The study deployed the Family Interview Schedule, a subsection of the International Study of Schizophrenia. Findings suggested that female sex of the patient and a younger age of both patient and caregiver were associated with greater stigma. Marriage and fear of rejection by neighbors were some of the more stigmatizing aspects. Rural Indians showed a more stigmatizing attitude toward severe mental illness, especially among rural manual workers.
Weiss et al., 2001, conducted a study of psychiatric stigma across cultures and concluded that persons with depression in London experience restricted disclosure as stigma while Indian patients experience discrimination in the marital area.
WPA stigma project from India, conducted in four cities with 463 ill persons with schizophrenia and 651 family members, concluded that two-third of the participants reported discrimination. Women were more stigmatized as well as those living in urban areas. There were less stigma and more acceptance in those with limited literacy. Males experienced greater discrimination in the job area while women experienced more problems in the family and social area.
Both the national and international perspectives on stigma suggest the importance of the role it plays in the life of a person suffering from mental illness. Stigmatizing factors also have major cultural influences; hence, more studies examining the cross-cultural variations will be worthwhile.
| Anti-Stigma Efforts of the World Psychiatric Association|| |
Public health interest in the burden of mental illness and the hidden burden of mental health- related stigma has increased in the past decade. Organizations such as the WHO, the WPA and the World Association for Social Psychiatry have all recognized stigma as a major public health challenge. Large-scale nationally coordinated population-based anti-stigma initiatives have also emerged during this time in Australia, New Zealand, the United Kingdom and Japan.
WPA initiated a global program to fight stigma and discrimination caused due to schizophrenia in 1997. More than 20 countries have joined the WPA's Open-the-Doors global network in the 10 years since its inception. This is the largest and longest running anti-stigma program to date. Participating countries include Canada, Spain, Austria, Germany, Italy, Greece, the USA, Poland, Japan, Slovakia, Turkey, Brazil, Egypt, Morocco, the United Kingdom, Chile, India, and Romania, with several more in the planning phases.
The Open-the-Doors Program is unique among anti-stigma efforts in that it reflects the work of an international consortium of members. Early experience showed that it was extremely important to include members of target groups on local planning committees.
A wide number of groups have been targeted by local programs to be recipients of anti-stigma interventions. Their diversity highlights the pervasiveness of stigma both within and across cultures as well as the importance of adopting a program design process that allows for culturally relevant content.
An important accomplishment of the WPA global program has been to increase the production of knowledge and practical experience concerning better practices regarding anti-stigma programs in both developed and developing countries.
To build and expand in the momentum gained, program members have recently developed a WPA Scientific Section on Stigma and Mental Health. The section was approved by the WPA General Assembly at the 13th World Congress of Psychiatry held in Cairo, Egypt in 2005. Since its inception, the section has grown to include some 60 researchers from 25 countries. In 2015, the section co-sponsored the 7th International “Together Against Stigma Conference” in San Francisco. The theme of the conference was “Each Mind Matters.” Each Mind Matters is California's mental health movement. It brings hundreds of local organizations and thousands of individuals together to advance mental health. Delegates considered opportunities for anti-stigma programming and future directions. People with lived experience of a mental illness were heavily involved in the program and the conference. A wide range of topics were covered ranging from self-advocacy and contact-based education to population-based approaches. Members of the section presented keynote addresses as well as breakout symposia and workshop sessions.
Anti-discrimination laws is a strategy that is being actively pursued in countries including the USA (the Americans with Disabilities Act [ADA] 1990); the UK (Disability Discrimination Act 1995); Australia, New Zealand, and China.
Evidence from the USA, in particular, suggests that the ADA is providing a useful lever for change for people with mental health problems. It has been used for educating employers about how reasonable accommodations/adjustments can be made for people with psychiatric disabilities.
| Anti-Stigma Efforts: Kerala Experience|| |
Kerala has the best health indices in India, often comparable to the developed Western world. This state also provides one of the best health services for the less privileged, at the lowest possible cost. This is often referred to us “the Kerala Model of Health Care.” Kerala is an example, especially to the developing world, for its anti-stigma efforts. General hospital psychiatry, started in 1967, is remarkably developed in the state. This has taken psychiatric care – earlier confined to the three mental hospitals to the doorsteps of the common man. General hospital psychiatry is equally developed at the government hospitals as well as the numerous private hospitals.
The shift of psychiatry out of the mental hospitals to General Hospital Psychiatric Units had a salutary effect on anti-stigma efforts. Psychiatric care in the general hospital carries very little stigma as the psychiatric services merges with the general health services. Besides, a large number of patients are routinely referred from the various other specialties to psychiatrists. This mode of consultation – liaison has been very helpful to reduce stigma. In Kerala, the work of NGOs such as “Navajeen” at Kottayam and “Mariasadan” at Palai, where a large number of lay volunteers work ably guided by our psychiatric colleagues has also de-stigmatized psychiatry and mental health care. Navajeevan and Mariasadan are not functioning as mental health hospitals but as rehabilitation centers. Patients are looked after by volunteers, and there is no human rights violation. Individual rights are protected, and dignified living enabled. Most importantly, they function on the principle of person-centered psychiatric care.
| The Mariasadan Model|| |
Mariasadan (”St Mary's abode”) is a psychiatric rehabilitation center – run by an NGO - functioning at Palai, Kottayam District, Kerala, India under the supervision of the author and other psychiatric colleagues. Founded in 1998, the center now has nearly 300 inmates of both sexes, undergoing rehabilitation. The main rehabilitation tools employed here are music, drama, and art. The center has a music and orchestra team - comprising people living with mental illness - which has performed in nearly 300 stages. They have also a drama team which had produced eight dramas which have been performed at various theaters/stages in several parts of Kerala State in India. The center popularizes various other art forms as well. These activities have made giant strides in anti-stigma movement in the state and have become a model for others.
| Conclusions|| |
Experience and evidence gained indicate that there has to be a shift in focus of research and action from stigma to discrimination. This would allow an evaluation of anti-stigma interventions by measuring whether and how they change behavior toward people with mental illness, without necessarily assessing changes of knowledge or feelings. Most importantly, such a shift of focus makes it possible for people with mental illness to benefit from relevant antidiscrimination policies and laws in their country or jurisdiction, on a basis of parity with people with physical disabilities.
Reversal of the negative effects of discrimination, would lead to people presenting for treatment sooner and comply better if psychiatric services were less stigmatized and stigmatizing, which will have a lower drop-out and default rate. Society would benefit from greater social cohesion, and financially, by rehabilitating people back into paid employment.
Stigma is an important issue on its own and also an issue that helps in improving the relationship between practitioners, users, and carers. Anti-stigma measures help to improve the quality of mental health services and even enhance the self-esteem of psychiatry in itself.
Future anti-stigma interventions must do more than change public knowledge or attitudes toward the mentally ill for it to become effective.
| References|| |
Goffman E. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs: Prentice Hall; 1963.
Link BG, Phelan JC. Conceptualizing stigma. Ann Rev Sociol 2001;27:363-85.
Jones E, Farina A, Hastorf A, Markus H, Miller DT, Scott R. Social Stigma: The Psychology of Marked Relationships. New York: Freeman; 1984.
Sartorius N. Breaking the vicious cycle. Ment Health Learn Disabil Care 2000;4:80.
Brockington IF, Hall P, Levings J, Murphy C. The community's tolerance of the mentally ill. Br J Psychiatry 1993;162:93-9.
Corrigan PW, Miller FE. Shame, blame, and contamination: A review of the impact of mental illness stigma on family members. J Ment Health 2004;13:537-48.
Farina A. Stigma. In: Mueser KT, Tarrier N, editors. Handbook of Social Functioning in Schizophrenia. Needham Heights, MA, US: Allyn & Bacon; 1998. p. 247-79.
Thornicroft G, Rose D, Kassam A, Sartorius N. Stigma: Ignorance, prejudice or discrimination? Br J Psychiatry 2007;190:192-3.
World Health Organization, World Organisation of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians, ed. Integrating mental health into primary care: A global perspective. Geneva, Switzerland: London: World Health Organization; Wonca; 2008. P. 206.
Cohen A. Prognosis for schizophrenia in the third world: A reevaluation of cross-cultural research. Cult Med Psychiatry 1992;16:53-75.
Corrigan PW, Watson AC. Understanding the impact of stigma on people with mental illness. World Psychiatry 2002;1:16-20.
Thornicroft G, Brohan E, Rose D, Sartorius N, Leese M; INDIGO Study Group. Global pattern of experienced and anticipated discrimination against people with schizophrenia: A cross-sectional survey. Lancet 2009;373:408-15.
Raguram R, Weiss MG, Channabasavanna SM, Devins GM. Stigma, depression, and somatization in South India. Am J Psychiatry 1996;153:1043-9.
Thara R, Srinivasan TN. How stigmatising is schizophrenia in India? Int J Soc Psychiatry 2000;46:135-41.
Weiss MG, Jadhav S, Raguram R, Vounatsou P, Littlewood R. Psychiatric stigma across cultures: Local validation in Bangalore and London. Anthropol Med 2001;8:71-87.
Murthy RS. Stigma is universal but experiences are local. World Psychiatry 2002;1:28.
Stuart H. Fighting the stigma caused by mental disorders: Past perspectives, present activities, and future directions. World Psychiatry 2008;7:185-8.
Trivedi JK, Kallivayalil RA, Pongsupap Y, Jilani AQ. South Asian person-centered psychiatric healthcare projects: An exploratory overview. Int J Pers Cent Med 2011;1:468-74.
Thornicroft G. Tackling discrimination. Ment Health Today 2006:26-9.
Wahl OF. Mental health consumers' experience of stigma. Schizophr Bull 1999;25:467-78.