Short-Lived Campaigns Are Not Enough

COMMENT schizOphrenia A call for more editiOns How the diagnostic bOOks Tracy Obituary John Huchra, and better research into manual for psychiatry has Chevalier on energetic astronomer who non-drug therapy p.165 evolved p.168 judging p.172 mapped the Universe p.174 .J. Burton Burton .J.

Short-lived campaigns are not enough 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.

hile running the World Health illnesses are incapable of holding down jobs to find housing, partners, jobs and friends, Organization’s mental-health or maintaining relationships and, at worst, this negative perception contributes to inad- programme from 1967 to 1993, are dangerous, irrational and incurable. equate medical treatment. In a recent survey WI realized that the biggest barrier to progress We know this from a wealth of anecdotal of people with schizophrenia, for example, was the negative attitude held by the public evidence and questionnaires conducted 73% of more than 700 participants reported and decision-makers towards the mentally by mental-health experts1,2. This is despite the need to conceal their diagnosis4. If ill. On being elected president of the World studies showing that people suffering from people miss out on treatment because they are Psychiatric Association in 1993, I there- depression, schizophrenia and other mental frightened about how friends and family will fore decided to make reducing the stigma diseases perform well in jobs and in other behave towards them when their diagnosis of mental illness the focus of a major pro- social contexts, and are no more violent than becomes known, the illness is likely to worsen. gramme that would mark my time in office. the general population3. Untreated, patients stand a greater chance Perhaps the most important outcome of that As well as making it difficult for patients of getting embroiled in conflicts and being project — called Open the Doors — was the forced to enter a mental institution, which in flaws it revealed in many of the assumptions SCHIZOPHRENIA turn contributes to the idea that mentally ill on which national and regional anti-stigma Search for origins and treatments people are aggressive and irrational. campaigns are based. nature.com/schizophrenia These pernicious misconceptions must be Most people believe that those with mental swept away. But short-lived anti-stigma

campaigns are not the best way to improve es G

the situation. ma i In the past 20 years or so, governments, non-governmental organizations, charities y/Getty y/Getty and various institutions such as the World B

Federation for Mental Health have launched Whit . t 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 King- dom’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 recom- Celebrities, such as British actor and comedian Stephen Fry, have taken part in anti-stigma campaigns. mended by psychiatrists, psychologists and other mental-health experts. In some cases, First, survey results should be used with would employ someone with a mental illness campaigns have included mental-health caution. They should not be the only factor is not the same as employing them. As well as specialists giving lectures at schools or to the shaping a programme against stigma, nor pro- survey results, indicators of a campaign’s suc- general public, for example about the implica- vide the main way to measure effectiveness. cess should include changes to employment tions and causes of mental illness. With some Assessments of general attitude — for legislation that diminish discrimination, exceptions, such as in New Zealand and Can- example, using questionnaires that ask people changes to the proportion of the national ada, campaigns have been of limited duration, whether they would employ someone suf- budget devoted to mental illness, or reports lasting from a few days to a year. fering from depression or object to a mental from patients that they can more easily find Such efforts have raised public awareness of institution being built in their neighbour- jobs or housing than they could before the the problem5. But there’s no evidence to sug- hood — can provide valuable metrics. (A UK campaign began. gest that programmes lasting less than a year survey carried out by the Institute of Psychia- A second lesson that emerged from Open have had a serious, lasting effect on stigma. try every few years from 1993 to 2003 showed the Doors is that providing people with infor- that people’s attitudes towards the mentally ill mation, for example about the underlying regiOnal differences had deteriorated over this period7.) But a bet- cause of mental disorders and how they might The World Psychiatric Association’s Open ter way to establish which issues most need change behaviour, may even increase stigma. the Doors programme began in 1996 and addressing in any given region is to ask peo- In Egypt, for instance, Open the Doors continued for more than a decade in most ple with mental illnesses and their families health workers tried to explain to Bedouins places. Participating countries included eight what is most burdensome for them. in the Sinai region that an illness needing European countries plus Brazil, Canada, In the Canadian arm of Open the Doors, treatment can cause certain types of behav- Chile, Egypt, India, Japan, Morocco, Tur- for instance, people with mental-health ill- iour, such as a peculiar way of speaking or key, Uganda and the United States6. Action nesses and their families reported in focus reports of inexplicable voices and visions. groups of 6–8 people, including mental- groups that, for them, Far from making them more tolerant, this health-care specialists, researchers, patients “Education discrimination and new knowledge prompted relatives and oth- and their relatives, established what needed on the causes insensitive behav- ers to start avoiding those individuals whom to be done to reduce the stigma of mental of mental iour shown by staff in they now saw as sick. Bedouins suffering illness in their region and how to roll out health facilities was from a mental disorder received more help events and implement changes in their area. disorders may a far bigger problem from their families and communities when Each group could draw on the resources and even increase than negative attitudes the belief that some enemy had inflicted expertise of a larger advisory group of 30–40 stigma.” among the general them with an evil spirit was allowed to per- people, including business people, journal- population. So the sist. Similar cases of education leading to a ists, ministries of social welfare, employees Canadian action group prioritized work- subsequent increase or at least a failure to of social services and local celebrities. ing with health personnel, first in Calgary reduce stigmatization have been observed in By establishing a network of institutions and then in Alberta. It held discussion Spain, Germany and South Africa8. and individuals committed to eroding stigma groups to educate staff about ways in which In short, education and the use of surveys to in their own and other countries, as well as staff behaviour might be improved — for track people’s attitudes can be valuable com- a range of local changes to procedures and example, by avoiding terms that people ponents of anti-stigma work, but only as part laws, Open the Doors reduced the degree with mental illness can find insulting, such of a slew of measures and efforts to improve to which people with mental illness are dis- as ‘schizophrenic’. The success of their the lives of patients and their families. criminated against and rejected by society approach led to Canada’s hospital accredi- Perhaps the most striking lesson to emerge all over the world6. What’s more, despite the tation organization issuing national guide- from Open the Doors is that the stigma of diversity of countries involved, several key lines for general health facilities about how mental illness can’t be held in check by bursts lessons have emerged from the programme to treat those with mental illness6. of effort, no matter how well implemented. about how best to tackle the problem. Reporting in a questionnaire that you Many of the people involved in national

164 | NATUrE | vOL 468 | 11 NOvEMbEr 2010 © 2010 Macmillan Publishers Limited. All rights reserved COMMENT and regional anti-stigma projects lasting a efforts and patients and their families. and their integration into society, but also to year or less have told me they felt let down This is beginning to happen in some coun- make our societies more civilized — a goal at the end of the campaign — whether they tries, including Germany, New Zealand, that concerns everyone. ■ are project organizers, volunteers, mental- Brazil, Japan and the United Kingdom. For health specialists or patients. No follow-up example, in Germany some of the education, Norman Sartorius is president of the studies have been carried out to monitor the media awareness and stigma research pro- Association for the Improvement of Mental lasting effect of such short-lived campaigns, grammes started during Open the Doors are Health Programmes at 14 Chemin Colladon, but people with mental illnesses especially being continued on a long-term basis9. 1209 Geneva, Switzerland. report that after having their hopes raised, The overall lesson from Open the Doors e-mail: [email protected] nothing had changed a year on. is that stigma should be tackled in a fun- To address the stigma of mental health in a damentally different way from most of the 1. taskin, e. o. et al. Soc. Psych. Psych. Epid. 38, 586–592 (2003). meaningful way, strategies known to be effec- efforts carried out so far. Involving patients 2. Corrigan, P. et al. Schizophrenia Bull. 28, 293–309 tive should become a routine part of everyday and their carers in the planning and evalua- (2002). services. These include educating health-care tion of projects, for example, will result in a 3. hopper, K. et al. (eds) Recovery from Schizophrenia: An International Perspective (oxford univ. Press, 2007). personnel, mediating face-to-face contact change in how programmes are constructed, 4. thornicroft, G., Brohan, e., rose D., sartorius, n. between the general public and people who funded and assessed. Likewise, including & Leese, m. for the indigo study group. Lancet have experienced mental illness, or persuad- efforts to reduce stigma as a routine part of 373, 408–415 (2009). 5. Vaughn, G. in Mental Health Promotion: Case ing journalists to avoid certain terms when mental-health services will require a change Studies from Countries (eds saxena, s. & Garrison, describing events relating to those with men- in the organization and functioning of such P.) 62–66 (World health organization, 2004). tal illness. Permanent networks of business institutions. 6. sartorius, n. & schulze, h. Reducing the Stigma of Mental Illness (Cambridge univ. Press, 2005). people, journalists, social workers, mental- Stamping out stigma by altering the 7. mehta, n., Kassam, a., Leese, m., Butler, G., & health experts, patients and volunteers need paradigms that have been the basis of most thornicroft, G. Br. J. Psychiat. 194, 278–284 (2009). to be established. Also, goals should be tai- anti-stigma efforts will be difficult and costly. 8. angermeyer, m. C., holzinger, a. & matschinger, h. Eur. Psychiat. 24, 225–232 (2009). lored to local circumstances, by building and But doing so is crucial not only to improve 9. Baumann, a. e. et al. in Understanding the Stigma sustaining trusting relationships between the funding of mental-health programmes, of Mental Illness (eds arboleda-Flórez, J. & everyone involved in the various anti-stigma the treatment of people with mental illness sartorius, n.) 49–68 (Wiley, 2008). Cognitive remediation therapy needs funding More rigorous studies should be done on the effects of a therapy that seems to improve the everyday functioning of people with schizophrenia, says Til Wykes.

ognitive remediation therapy seems to how the training works, analyse how basic enhance the attention span, memory cognitive improvements help patients, and retention and problem-solving skills discover how best to implement the therapy Cof those with schizophrenia through the Total National Institutes and to whom it should be offered. of Health spending performance of simple tasks. It has few side on schizophrenia effects and is relatively cheap. A three-month research in 2009 clinical trials course costs about US$700; three months’ Medications for schizophrenia can reduce supply of the schizophrenia drug clozapine the degree to which patients experience costs nearly $900. And there is growing evi- US$350 delusions and hallucinations, but they are dence that the therapy could be at least as blunt instruments. Several medications rec- valuable as the drugs currently used to treat MILLION ommended in national treatment guidelines, delusions and hallucinations, in helping peo- such as the UK National Institute for Health ple with schizophrenia lead fuller lives. and Clinical Excellence, are associated with Yet investment in research has been lack- side effects such as weight gain or dribbling, ing. In 2009, the US National Institutes of and even worsened cognitive problems1. Of which spent on Health (NIH) spent nearly $350 million on cognitive remediation therapy People’s ability to lead a normal life is less schizophrenia research, but dedicated only affected by the degree to which they experi- $4.1 million of this to studies of cognitive $4.� MILLION ence delusions and hallucinations following remediation therapy. medication treatment than by problems with To win the support of funders and turn basic neuropsychological processes2. remediation therapy into a serious treatment SCHIZOPHRENIA Various researchers worldwide began option, the community of researchers inves- Search for origins and treatments to develop cognitive remediation therapy tigating it needs to develop a more rigorous nature.com/schizophrenia in the late 1990s. The treatment involves approach. It is time to develop models of mental-health professionals (social workers