Short-lived campaigns are not enough

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The stigma of mental illness will be reduced only if region-specific awareness initiatives become a permanent fixture of health and social services, argues Norman Sartorius.

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While running the World Health Organization's mental-health programme from 1967 to 1993, I realized that the biggest barrier to progress was the negative attitude held by the public and decision-makers towards the mentally ill. On being elected president of the World Psychiatric Association in 1993, I therefore decided to make reducing the stigma of mental illness the focus of a major programme that would mark my time in office. Perhaps the most important outcome of that project — called Open the Doors — was the flaws it revealed in many of the assumptions on which national and regional anti-stigma campaigns are based.

Most people believe that those with mental illnesses are incapable of holding down jobs or maintaining relationships and, at worst, are dangerous, irrational and incurable. We know this from a wealth of anecdotal evidence and questionnaires conducted by mental-health experts1,2. This is despite studies showing that people suffering from depression, schizophrenia and other mental diseases perform well in jobs and in other social contexts, and are no more violent than the general population3.

Credit: J. BURTON

As well as making it difficult for patients to find housing, partners, jobs and friends, this negative perception contributes to inadequate medical treatment. In a recent survey of people with schizophrenia, for example, 73% of more than 700 participants reported the need to conceal their diagnosis4. If people miss out on treatment because they are frightened about how friends and family will behave towards them when their diagnosis becomes known, the illness is likely to worsen. Untreated, patients stand a greater chance of getting embroiled in conflicts and being forced to enter a mental institution, which in turn contributes to the idea that mentally ill people are aggressive and irrational.

These pernicious misconceptions must be swept away. But short-lived anti-stigma campaigns are not the best way to improve the situation.

In the past 20 years or so, governments, non-governmental organizations, charities and various institutions such as the World Federation for Mental Health have launched campaigns to combat the stigma of mental illness. 'Time to Change', for instance — run since 2009 by three British mental-health charities, Mind, Rethink and Mental Health Media, in collaboration with the Institute of Psychiatry in London — is the United Kingdom's largest effort yet to tackle the problem.

Many of these national or regional anti-stigma campaigns have followed a similar format. Messages to try to counteract people's prejudices are broadcast on the Internet, radio and television, often by celebrities. In general, the content of these messages — for example, that anyone can develop a mental disorder, that sufferers are not dangerous, and that mental illnesses are treatable — is recommended by psychiatrists, psychologists and other mental-health experts. In some cases, campaigns have included mental-health specialists giving lectures at schools or to the general public, for example about the implications and causes of mental illness. With some exceptions, such as in New Zealand and Canada, campaigns have been of limited duration, lasting from a few days to a year.

Such efforts have raised public awareness of the problem5. But there's no evidence to suggest that programmes lasting less than a year have had a serious, lasting effect on stigma.

Regional differences

Celebrities, such as British actor and comedian Stephen Fry, have taken part in anti-stigma campaigns. Credit: T. WHITBY/GETTY IMAGES

The World Psychiatric Association's Open the Doors programme began in 1996 and continued for more than a decade in most places. Participating countries included eight European countries plus Brazil, Canada, Chile, Egypt, India, Japan, Morocco, Turkey, Uganda and the United States6. Action groups of 6–8 people, including mental-health-care specialists, researchers, patients and their relatives, established what needed to be done to reduce the stigma of mental illness in their region and how to roll out events and implement changes in their area. Each group could draw on the resources and expertise of a larger advisory group of 30–40 people, including business people, journalists, ministries of social welfare, employees of social services and local celebrities.

By establishing a network of institutions and individuals committed to eroding stigma in their own and other countries, as well as a range of local changes to procedures and laws, Open the Doors reduced the degree to which people with mental illness are discriminated against and rejected by society all over the world6. What's more, despite the diversity of countries involved, several key lessons have emerged from the programme about how best to tackle the problem.

First, survey results should be used with caution. They should not be the only factor shaping a programme against stigma, nor provide the main way to measure effectiveness.

Assessments of general attitude — for example, using questionnaires that ask people whether they would employ someone suffering from depression or object to a mental institution being built in their neighbourhood — can provide valuable metrics. (A UK survey carried out by the Institute of Psychiatry every few years from 1993 to 2003 showed that people's attitudes towards the mentally ill had deteriorated over this period7.) But a better way to establish which issues most need addressing in any given region is to ask people with mental illnesses and their families what is most burdensome for them.

“Education on the causes of mental disorders may even increase stigma.”

In the Canadian arm of Open the Doors, for instance, people with mental-health illnesses and their families reported in focus groups that, for them, discrimination and insensitive behaviour shown by staff in health facilities was a far bigger problem than negative attitudes among the general population. So the Canadian action group prioritized working with health personnel, first in Calgary and then in Alberta. It held discussion groups to educate staff about ways in which staff behaviour might be improved — for example, by avoiding terms that people with mental illness can find insulting, such as 'schizophrenic'. The success of their approach led to Canada's hospital accreditation organization issuing national guidelines for general health facilities about how to treat those with mental illness6.

Reporting in a questionnaire that you would employ someone with a mental illness is not the same as employing them. As well as survey results, indicators of a campaign's success should include changes to employment legislation that diminish discrimination, changes to the proportion of the national budget devoted to mental illness, or reports from patients that they can more easily find jobs or housing than they could before the campaign began.

A second lesson that emerged from Open the Doors is that providing people with information, for example about the underlying cause of mental disorders and how they might change behaviour, may even increase stigma.

In Egypt, for instance, Open the Doors health workers tried to explain to Bedouins in the Sinai region that an illness needing treatment can cause certain types of behaviour, such as a peculiar way of speaking or reports of inexplicable voices and visions. Far from making them more tolerant, this new knowledge prompted relatives and others to start avoiding those individuals whom they now saw as sick. Bedouins suffering from a mental disorder received more help from their families and communities when the belief that some enemy had inflicted them with an evil spirit was allowed to persist. Similar cases of education leading to a subsequent increase or at least a failure to reduce stigmatization have been observed in Spain, Germany and South Africa8.

In short, education and the use of surveys to track people's attitudes can be valuable components of anti-stigma work, but only as part of a slew of measures and efforts to improve the lives of patients and their families.

Perhaps the most striking lesson to emerge from Open the Doors is that the stigma of mental illness can't be held in check by bursts of effort, no matter how well implemented. Many of the people involved in national and regional anti-stigma projects lasting a year or less have told me they felt let down at the end of the campaign — whether they are project organizers, volunteers, mental-health specialists or patients. No follow-up studies have been carried out to monitor the lasting effect of such short-lived campaigns, but people with mental illnesses especially report that after having their hopes raised, nothing had changed a year on.

To address the stigma of mental health in a meaningful way, strategies known to be effective should become a routine part of everyday services. These include educating health-care personnel, mediating face-to-face contact between the general public and people who have experienced mental illness, or persuading journalists to avoid certain terms when describing events relating to those with mental illness. Permanent networks of business people, journalists, social workers, mental-health experts, patients and volunteers need to be established. Also, goals should be tailored to local circumstances, by building and sustaining trusting relationships between everyone involved in the various anti-stigma efforts and patients and their families.

This is beginning to happen in some countries, including Germany, New Zealand, Brazil, Japan and the United Kingdom. For example, in Germany some of the education, media awareness and stigma research programmes started during Open the Doors are being continued on a long-term basis9.

The overall lesson from Open the Doors is that stigma should be tackled in a fundamentally different way from most of the efforts carried out so far. Involving patients and their carers in the planning and evaluation of projects, for example, will result in a change in how programmes are constructed, funded and assessed. Likewise, including efforts to reduce stigma as a routine part of mental-health services will require a change in the organization and functioning of such institutions.

Stamping out stigma by altering the paradigms that have been the basis of most anti-stigma efforts will be difficult and costly. But doing so is crucial not only to improve the funding of mental-health programmes, the treatment of people with mental illness and their integration into society, but also to make our societies more civilized — a goal that concerns everyone.

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Sartorius, N. Short-lived campaigns are not enough. Nature 468, 163–165 (2010) doi:10.1038/468163a

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