Peter Byrne is Senior Lecturer at East Kent NHS Community Trust (2 Radnor Park Avenue, Kent CT19 5HN). He completed all his psychiatric training in Ireland: in Dublin, Waterford and Cork. He also lectures in Film Studies at University College Dublin. He is a former chairman of the Public Education Committee of the Royal College of Psychiatrists in Ireland, and the current co-chairman of media projects of the Changing Minds Committee. His research interests include stigma, the media, patient and public education.
Stigma is defined as a sign of disgrace or discredit, which sets a person apart from others. The stigma of mental illness, although more often related to context than to a person's appearance, remains a powerful negative attribute in all social relations. Sociological interest in psychiatric stigma was given added vigour with the publication of Stigma Notes on the Management of Spoiled Identity (Goffman, 1963). More recently, psychiatrists have begun to re-examine the consequences of stigma for their patients. In 1989, the American Psychiatric Association's annual meeting's theme overcoming stigma was subsequently published as a collection of articles (Fink & Tasman, 1992), and last year saw the launch of the Royal College of Psychiatrists" five-year Changing Minds anti-stigma campaign.
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| Box 1. The experience of stigma Shame Blame Secrecy The "black sheep of the family" role Isolation Social exclusion Stereotypes Discrimination
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The adaptive response to private and public shame is secrecy. Commenting on the barriers to the management of depression, Docherty (1997) cites both patients' shame in admitting to, and physicians' reluctance to enquire about, depressive symptoms. Family and friends may endure a stigma by association, the so-called "courtesy stigma" (Goffman, 1963). In one study of 156 parents and spouses of first-admission patients, half reported making efforts to conceal the illness from others (Phelan et al, 1998). Professionals are no different in this regard, and hide psychiatric illness in themselves or a family member. Secrecy acts as an obstacle to the presentation and treatment of mental illness at all stages. So, unlike physical illness, when social resources are mobilised, people with mental disorders are removed from potential supports. Poorer outcomes in chronic mental disorders are likely when patients' social networks are reduced (Brugha et al, 1993).
The question arises as to just what all this shame and secrecy is about. Negative cultural sanction and myths combine to ensure scapegoating in the wider community (see Box 1
). The reality of discriminatory practices supplies a very real incentive to keep mental health problems a secret. Patients who pursue the secrecy strategy and withdraw have a more insular support network. Discrimination occurs across every aspect of social and economic existence (Fink & Tasman, 1992; Heller et al, 1996; Read & Reynolds, 1997; Byrne, 1997; Thompson & Thompson, 1997). A civilisation should be judged by how it treats its mentally ill: discrimination is also about the conditions in which our patients live, mental health budgets and the priority which we allow these services to achieve. By way of summary, Gullekson (in Fink & Tasman, 1992) writes about her brother's schizophrenia:
"For me stigma means fear, resulting in a lack of confidence. Stigma is loss, resulting in unresolved mourning issues. Stigma is not having access to resources... Stigma is being invisible or being reviled, resulting in conflict. Stigma is lowered family esteem and intense shame, resulting in decreased self-worth. Stigma is secrecy... Stigma is anger, resulting in distance. Most importantly, stigma is hopelessness, resulting in helplessness."
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Philo (1996) measured violence as the central element in television representations in 66% of items about mental illness, an interesting figure in that it corresponds with the Royal College of Psychiatrists" 1998 survey, where 70% believed that people with schizophrenia are violent and unpredictable. At the other extreme, people with mental illness are frequently portrayed as victims, pathetic characters, or the deserving mad (Byrne, 1997). This parallels the experience of physical disability, where sympathy is a pretext for social distance the "Does he take sugar?" strategy. The Royal College of Psychiatrists" survey also recorded consistently high responses (ranging from 5079%) in relation to six common mental disorders, when the public was asked whether the sufferer was "hard to talk to". Most clinicians would instinctively encourage empathy not sympathy for their patients.
In cinema and television, mental illness is the substrate for comedy, more usually laughing at than laughing with the characters (Byrne, 1997). As part of the them and us strategy, mental disorders have also been conferred with highly charged negative connotations of self-infliction, an excuse for laziness and criminality. Hyler et al (1991) have written about a number of Hollywood films where the representations of mental illness are of "overprivileged, oversexed narcissistic parasites". But "pull yourself together" attitudes are not confined to fictional screen representations, with one Northern Ireland general practitioner writing:
"Yet they ("neurotic patients") take up far too much of our time and energy people complaining, miserable, depressed, neurotically whining about how unhappy they are, pouring out all their problems in the surgery and dumping them on my doorstep. It would be really unbearable if I was actually listening to them" (Farrell, 1999).
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| Box 2. Stereotypes of mental illness Psychokiller / maniac Indulgent, libidinous Pathetic sad characters Figures of fun Dishonest excuse: hiding behind psychobabble or doctors
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Negative attitudes to people with mental illness start at playschool and endure into early adulthood: one cohort confirmed the same prejudices on re-examination eight years later (Weiss, 1994). Green et al (1987) measured consistently negative public attitudes at five separate points over 22 years. These studies, and that quoted above from Huxley (1993), directly contradict a recent claim (stated but unreferenced) that "public perception of psychiatric disorders will change: improved understanding of the causes and mechanisms of disease is likely to reduce stigma" (McGuffin & Martin, 1999). Accepting the low value most cultures attach to mental disorders, are there any qualities in stigmatisers that could be altered to reduce overall levels of stigma? Adorno et al (1950) have hypothesised about the likely make-up of prejudiced people: they have an intolerance of ambiguity, rigid authoritarian beliefs and a hostility towards other groups (ethnocentricity). Other studies of the attributes of those who are more likely to produce negative evaluations of stigmatised people found no relation to "conventionalism", but did report an association with a "cynical world view" (Crandall & Cohen, 1994).
Knowing someone who has a mental illness is not associated with more enlightened attitudes (Wolff et al, 1996a), but Huxley (1993) identifies that the key factor is direct contact with people who have had "helpful treatment for episodes of mental illness". The challenge, listed in the third section of Box 3
, is to confront the stigmatiser with his or her irrational beliefs, in addition to enabling direct contact with "one of them". This may seem an unrealistic aim, if the prototype stigmatiser conjures up images of shaven-headed boot-boys, but any list of stigmatisers includes landlords, employers, insurers, welfare administrators, housing officers, universities, health care professionals, lawyers, prison workers and teachers.
| Box 3. Factors which influence the prejudice of stigmatisers Factor type Example Likely to increase prejudice Attribute of stigmatised Gender Male gender Appearance Unkempt appearance Behaviour Acute illness episode Financial circumstances Homelessness Assumptions about the individual's disorder Perceived focus of illness Many deficits Perceived responsibility Not responsible for actions Perceived severity History of hospital admission Knowledge base about particular disorder Perceived origin Self-inflicted Perceived course Incurable/"chronic" Perceived treatments "Needs drugs" to stay well Perceived danger Criminality or violence
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Wolff et al (1996a,b) have provided a practical working model for interventions aimed at various target groups (see Box 4
). One aspect of this is to listen to the concerns of the people whose attitudes you wish to change. Young couples with children have specific fears that need to be addressed, and in this group, reductions in levels of fear can be achieved with educational interventions (Wolff et al, 1996a). Other settings, for example schools, workplaces and welfare services, will require different information packages tailored to their needs. The content of these interventions should include the components of established psychoeducation modules, the stigmadiscrimination paradigm (a prototype presentation is available at www.rcpsych.ac.uk) and information specific to the needs of the target group.
| Box 4. Key suggestions for educational interventions: after Wolffet al (1996a) Specific target groups, with prior identification of their attitudes No evidence of community backlash Flexible public education packages Small groups work better Several interventions over time exceed the sum of their parts Continuing contact with the group (keyworker) maintains momentum
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Mental health professionals need to move beyond teaching psychoeducation in isolation (at the clinic) to full participation in planned programmes of public education (see Box 5
). Every intervention must convince its target group of the importance of stigma/discrimination, challenge stereotypes in ourselves and others, and pursue the ongoing task of unravelling the nature of prejudice. These three separate tasks are summarised in the Changing Minds slogan: "Stop, think, understand".
| Box 5. From psychoeducation to public education Patient Person Family Target group Network Community Advocate group Society
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Closing the knowledge gap is only part of the answer. Stigmatisers, as a rule, are unlikely to volunteer to attend educational packages. Even assuming the message reaches all targets, education alone cannot change centuries of folklore and prejudice. The "carrot" of education must be accompanied by the "stick" of challenges to media misrepresentations, positive discrimination in the workplace, test cases in the courts, and legal sanction through (for example) the Disability Rights Commission. In this regard, lessons can be learned from AIDS foundations and the gay community, who met the challenge of initial public antipathy to AIDS, and who have now achieved the dual goals of health promotion and major reductions in discriminatory practices (Thompson & Thompson, 1997).
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| Box 6. A history of dumb ideas in psychiatry Moon (lunatic) and womb (hysteria) theories Technique of persuasion Epileptic personalities Mental and moral defectives Eugenics (Ernst Rubin) Insulin coma treatment Frontal lobotomy Momism, schizophrenogenic mothers, Schism & Schew families Treatments for homosexuality
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Many psychiatrists share the stereotypes described above. Lewis & Appleby (1988) reported that psychiatrists reacted to vignettes differently if the person had been given the diagnosis of a personality disorder: once labelled, primary diagnoses differed and value judgements (e.g. "manipulative", "does not merit NHS time", "unlikely to improve", "likely to annoy") appeared more frequently. Antipathies to psychiatry and psychiatrists are widespread among the medical profession, but perhaps the real issue is that the majority of psychiatrists fail to challenge these prejudices. This failure to respond, be it acquiescence or resignation, cannot continue. The impetus to challenge ageism did not come from medical gerontology, but was later championed by that speciality. Radical action within and outside psychiatry is now required.
Dubin & Fink (in Fink & Tasman, 1992) describe how psychiatrists perpetuate many concepts underlying biased and stigmatising attitudes, and suggest that the way in which psychiatry is structured maintains the status quo. Eisenberg (1995) has criticised the highly charged either/or discourse that mental diseases are either biological/no one's fault or psychological/"caused by" parents, spouses or patients. Silence on these issues is no longer tenable: for all aspects of stigma and discriminatory practices, psychiatrists need to complain more often and more effectively media coverage is a good starting point (Hart & Philipson, 1999). For psychiatrists, the debate goes beyond stigma. It includes the quality and structure of existing services, and the barriers that deny access to them (Thompson & Thompson, 1997). Compliance is one example where both a concept, and the theories underlying it, are in need of a radical change in mind set. Brandon (in Read & Reynolds, 1996) has provided a number of suggestions for change among psychiatrists, principally abandoning the "them and us" mentality. Crepaz-Keay (in Read & Reynolds, 1996) sums up the (stereotypical) psychiatrist's reactions to advocates: "But you"re not like my clients" or "Who do you represent?".
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Schizophrenia presents unique challenges. Lack of insight is always problematic, but an affective component can be associated with denial of symptoms or rejection of treatment at key points in the illness. The life events model contains many events that could be precipitated by stigma-led experiences: losing a job, a home or a friendship. It is about humiliating and devaluating experiences, and these play an important part in relapses of depression. Equally, the central roles of vulnerability, destabilisation and restitution factors have a bearing on outcome. Pessimism in the profession may also negatively affect patient perceptions here: for years, the chronic social breakdown syndrome of long-stay patients was seen as an integral part of schizophrenia (Eisenberg, 1995). Given that at least 50% of people with schizophrenia have significant social skills deficits, any programme must include improving interpersonal skills. A symptom-focused approach that includes stigma management can be incorporated into an existing cognitivebehavioural model of treatment (Enright, 1997). A comprehensive list of social obstacles to successful de-institutionalisation has also been described (Farina et al, in Fink & Tasman, 1992).
With the possible exception of some patients with Alzheimer's dementia, patients need to know their diagnosis and what the problems are and are likely to be. Just as adverse public attitudes endure over time, the adverse effect of stigma on individuals' well-being persists from entry into treatment up until a year after successful treatment (Link et al, 1997). Cognitivebehavioural therapy (CBT) is now of proven efficacy across the spectrum of mental disorders (Enright, 1997): its core strategy is disseminating information about the illness. Holmes & River (1998) have outlined a CBT approach to combating stigma in individuals. Their article is one of seven similar articles in the Winter 1998 (vol. 5) issue of Cognitive Behavioural Practice.
The next step in management is to transform the person from patient to advocate. Part of coping with stigma is fighting stigma. A recent Royal College of Psychiatrists' Council Report lists many different kinds of advocacy: self, peer-group, legal, carer and citizen (Royal College of Psychiatrists, 1999). In joining an advocate group, the dangers of a "them and us" situation arise. Certainly, not everyone who experiences mental illness needs the companionship and validation of others who have had similar experiences. But if the advocate group includes contacts with partners, friends and families, along with community groups, civil rights activists, campaigners, even (sic) mental health professionals, then it will be a valuable experience. The College, in the same report, issues a formal policy directive on advocacy, broadly welcoming it, and recommending early exposure to it for its trainees. Fisher (1994) identifies empowerment as essential to recovery from chronic disability. The relationship between psychiatry and the advocacy movement is not a one-way street. In the past three years, these are the learning experiences that the author has encountered at advocates' meetings:
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All available evidence confirms the value of local initiatives, and that means your active participation. Which would be worse the widespread reduction of prejudice against people with mental illness without the participation of our speciality, or the maintenance, through disinterest, of the status quo?
Please send new ideas for combating stigma to: Liz Cowan, Changing Minds Campaign Administrator, Royal College of Psychiatrists, 17 Belgrave Square, London SW1X 8PG.
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View this table: [in a new window] | MCQ answers |
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