Year : 2014 | Volume
: 19 | Issue : 1 | Page : 1--3
Stigma and community interventions: Has enough been done?
Rajesh Sagar, Raman Deep Pattanayak
Department of Psychiatry, All India Institute of Medical Sciences (A.I.I.M.S.), New Delhi, India
Dr. Rajesh Sagar
Department of Psychiatry, All India Institute of Medical Sciences (A.I.I.M.S.), New Delhi
|How to cite this article:|
Sagar R, Pattanayak RD. Stigma and community interventions: Has enough been done?.J Mental Health Hum Behav 2014;19:1-3
|How to cite this URL:|
Sagar R, Pattanayak RD. Stigma and community interventions: Has enough been done?. J Mental Health Hum Behav [serial online] 2014 [cited 2020 Sep 28 ];19:1-3
Available from: http://www.jmhhb.org/text.asp?2014/19/1/1/143882
Stigma forms an invisible but significant barrier in the treatment seeking process and in the recovery and reintegration efforts for people suffering from mental and behavioral disorders. As conceptualized by Thornicroft,  stigma has three closely related constituent elements comprising of problems of knowledge (ignorance), problems of negative attitudes (prejudice) and problems of behavior (discrimination). Widespread stigma in community adds to the disability of the person with mental illness and affects the family members.
The award paper by Garg et al.  published in current issue has highlighted this fact that the families of mentally ill persons also bear the brunt of stigma and discrimination similar to the patients, especially in case of chronic disorders such as schizophrenia. Further, the substance using patients and their caregivers had highest total stigma of all disorders.  These feelings of stigma and discrimination are deeply entrenched in the psyche of the patients and their family members affecting many spheres of their life (marriage, business, education, relationships etc.,) and self-identity. In Asian countries, stigma might be perceived as being more severe, because it is attached to the family as a whole. 
In case of physical illnesses (e.g., tuberculosis, leprosy), the availability of effective, curative treatments have been able to cut down the stigma associated with them.  As far as psychiatric disorders are concerned, the availability of treatment has had many positive effects, majorly on the de-institutionalization of patients and the move towards community-based care. However, unlike the treatment for infectious illnesses, the mental health treatments available are geared at control, rather than cure, and even then, an adequate or full control may not be as likely. The medications are likely to continue for a long term and occasionally, the treatment per se is viewed as a source of stigma, rather than being a source of comfort. Most patients hide their daily medication from their friends, relatives or colleagues.
Indeed, with the advent of psychotropic medications and human rights movement, several positive changes have been seen in terms of stigma reduction, if not elimination. Past century has seen a major change in stance from "protecting the society from mentally ill persons by keeping them in mental asylums" to protecting their human rights and caring for mentally ill in the community. There have been several other positive changes and initiatives for mentally ill persons. However, stigma and negative attitudes continue to have a major impact on public health programmes and services for mental illness, which remain underutilized.  As stigma is a ubiquitous phenonmenon, engaging in only individual level interventions (treatment, rehabilitation, self help etc.,) are unlikely to affect the attitudes of the communities in a significant manner. There is a need for more emphasis on the community interventions as well as workplace interventions.
Interventions proven to be effective for other stigmatizing physical diseases can serve as a useful source to refer for stigma reduction in mental illness as well.  It has been seen from review of literature that following interventions at a community level may help in stigma reduction (a) Education: With an aim to inform the general public and community groups in order to increase their knowledge about the illness and provide facts that counter the false assumptions on which stigma is based, (b) Contact: Refers to all interactions, direct or through media, between the public and persons affected with the specific objective to reduce stigmatizing attitudes. Additionally, there might be some role for advocacy as a means for stigma reduction, even though it remains under-researched as a strategy. Advocacy programmes, for example as seen in case of HIV/AIDS, work towards provision of an enabling environment, influence the policies and discriminatory laws, and to improve access to treatment and care for persons affected. Target-specific stigma change, where the programmes are crafted specifically at the key groups that have power in the lives of people with mental illness - e.g., employers, legal justice system, health care providers and policy makers are shown to be effective.  A carefully coordinated approach based on social marketing techniques designed to achieve a social good have worked. 
Coming to the action in Indian context, it is worthwhile to begin with a mention of an international, collaborative programme (Open the Doors) initiated by World Psychiatric Association  nearly two decades ago, and now established with an international network in more than 25 countries, including India. Various anti-stigma interventions ranging from speaker's bureaus and contact-based educational programs, to protest-based programs, to mass media campaigns using television or radio and novel applications of drama and the arts, run with the goal of reduction or elimination of stigma related to schizophrenia. It is envisaged as a long-term programme rather than a short-lasting campaign.  Unlike any of earlier programs, the unique aspect is that it actively involves the patients and family members at all the possible steps right from planning to evaluation of programme. The specific targets, therefore, may vary from one region to another depending on local needs and stakeholder's perceptive.  In 2004, Dr. Abdul Kalam, then President of India had helped launch an anti-stigma effort in India in collaboration between SCARF and the WPA Global programme. However, somehow, the WPA global programme has still not enjoyed a wide coverage in India compared to some other countries.
The National Mental Health Programme (NMHP) by the Government of India has emphasized on the Information, Education and Communication (IEC) activities to create awareness and removal of stigma for mental illness. The efforts are made to address mental health issues through print and electronic media. As part of NMHP IEC activities, a series of advertisements and public messages were conceptualized and disseminated through national television and radio programmes with an aim of generating awareness regarding mental disorders and their treatment among people.  Similarly, National AIDS control Organization also initiated public awareness messages through national media aimed at stopping the workplace and other discrimination against people living with HIV/AIDS.
Large scale initiatives towards stigma reduction are still lacking in India.  Though there have been efforts by several agencies, but only few among them have been far-reaching and sustainable. Indian Psychiatric Society had committed to fight against stigma since its inception (e.g., 'Free the society from stigma of mental illness' theme in 1997). Certain legislations are in place and are currently being revised e.g., Persons with Disability Act and Mental Health Care Bill. These are aimed to ensure social inclusion of mentally ill persons with provisions for protection of rights, provision of care, employment opportunities, affirmative action and non-discrimination for persons with mental illness. However, more needs to be done in terms of implementation and resource allocation. Many community and non-governmental organizations have been working in the field of chronic mental illness as well as substance use, with an effort at evaluation of the community based rehabilitation of a mental disorder.  Quality research on effectiveness of specific anti-stigma interventions is, however, conspicuously lacking.
To create a large scale initiative in a huge country is a challenge, especially in face of limited manpower and resources. National Institute of Mental Health and Neurosciences has sought to coordinate efforts in four major metropolitan cities to develop Local Action Groups with involvement of families and support organizations. Certain simple initiatives e.g., printing messages on milk packets, distribution of pamphlets at hospitals and shopping malls, newspaper coverage etc., were employed to create awareness. School based educative initiatives can facilitate the dissemination of information to a larger geographical area, and at an early age. Collaborations have been made with social groups to develop specific programmes for law enforcement personnel, general practitioners and medical students, all of which will assist in reducing stigma The limitation of funding and other resources have not allowed to assess the effectiveness and outcome data. ,
In parallel with the people with physical disabilities, people with mental illness-related disabilities may need what are called 'reasonable adjustments', which can be implemented at the workplace.  Several changes are necessary, for example, the development of psychological services for people with mental illness in work, support programmes for gaining employment or awareness campaigns.
There is a need to develop national mental health policies in accordance to international standards. World Health Organization has published standards to guide countries in producing and revising mental health laws, though, nearly 40% of countries in the world do not have a mental health policy, including India. International organizations can contribute towards better care and less discrimination by indicating the need for national mental health policies and by giving guidance on their content. 
There is no simple solution or cure to remove stigma of mental illness. The roots of stigmatization, and reasons for its continuation, are quite complex and embedded in the socio-cultural norms of a society. Besides health care professionals, other important channels such as media, healthcare, social services, educational system, law enforcement and legislation have an important role to play in dealing with stigma.
In future, use of culturally appropriate messages framed in an easily understandable fashion need to be disseminated at a larger scale. The community leaders can be involved for a far-reaching effect. Future research will guide on the most effective strategy or a combination of strategies to reduce stigma by generating the evidence base. It is to be re-emphasized that there is important to reach out to the family members and take their perspectives into account while planning the anti-stigma programmes. To be judged effective, interventions must fundamentally change the stigma experiences of people, and produce a lasting change in behaviours, and not only the knowledge and attitudes.  Finally, it seems that enough has not been done. Rather, the coordinated, large-scale efforts have been few and far in between. There is a need to strengthen the efforts aimed at stigma reduction in Indian context.
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