Stigma and discrimination: Time for interventions

The Greek word Stigma means “to carve, to mark as a sign of shame, punishment or disgrace”. It largely is associated with a physical deformity or disfigurement or an undesirable or dangerous characteristic that can provoke and perpetuate stigma.

Discrimination on the other hand results in definitive actions like prejudice, isolation/rejection, and stereotyping.

Stigma and discrimination have existed all throughout history in relation to both physical and mental disorders. Leprosy, Epilepsy, HIV-AIDS, Venereal diseases, even Tuberculosis and almost all mental disorders have been highly stigmatized.

Research attention on stigma and discrimination came to the fore in the last few decades. Most research in this area has been based on attitude surveys, describing the kinds of stigma and discrimination, and media representations of mental illness and violence, and has largely focused on schizophrenia. Almost all programs have excluded direct participation by service users, and there have not been many intervention studies in low and middle-income countries.[1]

However, there is evidence that interventions to improve public knowledge about mental illness can be effective. The main challenge in the future is to identify which interventions will produce behavior change to reduce discrimination against people with mental illness.

There have been Indian studies on the subject of stigma exploring negative attitudes, labels used to describe persons with mental illness,[2] stigma perceived by various groups of persons such as high school teachers[3], and portrayal of mental illness in newspapers[4] and films.[5]

Stigma in rural populations has been dealt with in great detail by papers from the COPSI study.[6] This was a mixed method study on 282 persons living with schizophrenia and 282 caregivers in three Indian sites. Quantitative findings indicated that experiences of negative discrimination were reported less commonly (42%) than more internalized forms of stigma experience such as a sense of alienation (79%) and significantly less often than in studies carried out elsewhere.

Higher levels of positive symptoms of schizophrenia, lower levels of negative symptoms of schizophrenia, higher caregiver knowledge about symptomatology, lower PLS age and not having a source of drinking water in the home were predictors of greater discrimination. The authors concluded that these findings add to the rationale for enhancing psycho-social interventions to support those facing discrimination and also highlight the importance of addressing public stigma and achieving higher level social and political structural change.

With this fairly extensive knowledge base we have on what causes and perpetuates stigma and discrimination related to mental disorders, we need to move on to developing models of intervention targeted at various sections of the community.

A review of intervention models[7] showed that the benefits of intervention have been largely short-term, be they for attitude change or enhancement of knowledge. The authors opine that there is a clear need for studies with longer-term follow-up to assess whether initial gains are sustained or attenuated and whether booster doses of the intervention are needed to maintain progress.

A systematic review of the effectiveness of stigma reduction intervention studies in India[8] found only nine eligible studies. While most stigma-reduction interventions were multi-level, none focused on the organization/institutional level. Most interventions were delivered to community members. None focused on mental health professionals as intervention delivery targets.

Maulik et al.[9] describe a longitudinal assessment of a multi-media stigma intervention program in the West Godavari district of Andhra Pradesh, India. Following that, the primary care-based mental health service was delivered for one year. Most knowledge, attitude, and behavior scores improved over the three-time points. Overall mean scores on stigma perceptions related to help-seeking improved a little.

It is fair to conclude that while we are largely aware of the nature of the stigma of mental disorders and its perpetuating factors in the Indian socio-cultural scene, there needs to be a thrust on evolving, implementing, and evaluating more anti-stigma interventions in communities. It is in this context that the recently released report of the Lancet Commission on Stigma and Discrimination[10] assumes a lot of importance.

This Lancet Commission report is the result of a collaboration of more than 50 people worldwide and brings together evidence and experience of the impact of stigma and discrimination and successful interventions for stigma reduction. More significantly, there have been a lot of inputs and active collaboration of people with lived experience of mental health conditions (PWLE), in keeping with the view of nothing about us without us. The report has also shown that there is enough accrued evidence that PWLE is the key change agents for stigma reduction.

The four main components considered were: self-stigma (or internalized stigma), which occurs when people with mental health conditions are aware of the negative stereotypes of others, agree with them, and turn them against themselves; stigma by association, which refers to the attribution of negative stereotypes and discrimination directed against family members (eg, parents, spouses, or siblings) or to mental health staff; public and interpersonal stigma, which refer to the forms of knowledge and stereotypes, negative attitudes (prejudice), and negative behavior (discrimination) by members of society towards people with mental health conditions; and structural (systemic or institutional) stigma, which refers to policies and programs which work against persons with mental disorders.

Many negative aspects of stigma such as damage to marital prospects, social exclusion in relation to education, the workplace, and the community, loss of property, inheritance, or rights to vote, and poorer health care have all been dealt with in this report. Contravention of basic human rights has an impact on four domains: personal, including self-stigma, quality of life, and service use; structural, including legal provisions, human rights, and the implementation of psychosocial interventions; health and social care; and social and economic, including work.

The group reviewed 216 papers on effective interventions and found that the most effective, evidence-based way of reducing stigma was probably increasing all forms of social contact. Other features of successful programs were involving PWLE in all aspects of co-producing ant stigma programs; carefully creating and adapting the program content based on context and culture; consulting closely with the identified target groups; and paying attention to the effects, outcomes, and sustainability of the program.

The role of traditional and new media in perpetuation/ reducing stigma was also explored in detail. The results of a global survey of 300 PWLE respondents in 45 countries (mostly LAMIC) reinforced the role of media and pointed out that treatment meted out to them should be on par with those with physical health conditions.

The Commission proposed eight key recommendations for action by international organizations, governments (to implement policies to support ending of stigma and discrimination), employers, (to provide employment opportunities) the health-care and social-care sectors, the media (stop the use of stigmatizing terms to refer to persons with mental disorders and project more positive stories) PWLE, local communities, and civil society, each with a specific target and indicators to develop a framework for ending mental health-related stigma and discrimination. Recommendations have also been made for policies to support the end of stigma and discrimination at national and global levels and the provision of equitable health care.

As far as India is concerned, I would urge the initiation of many more multi-modal anti-stigma campaigns co-designed with PWLEs and their rigorous monitoring. In fact, the Government of India and of the states should take the lead in this activity as was done with other stigmatizing conditions such as Leprosy and HIV.

Dr. Thara Rangaswamy

Co- Founder & Vice chairman,

Schizophrenia Research Foundation (SCARF)

One of the Commissioners of the Lancet Commission on stigma and discrimination.