Current Ideas: A Blog by Jeffrey A. Schaler

I've created this blog--"Current Ideas"--to share news and views related to my teaching, writing, and interests. If you want to post something, please keep it brief and to the point. Good contact is the appreciation of difference. There's no limit on opinions or information posting, but the tone of this blog is one of reasonably civilized discussion. Hate material is out, as well as unsupported extreme personal attacks.

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Friday, February 02, 2007

Renaming Schizophrenia

BMJ 2007;334:108 (20 January), doi:10.1136/bmj.39057.662373.80
Renaming schizophrenia
Diagnosis and treatment are more important than semantics


Rapid Responses

Stigma and psychiatry
22 January 2007

sobia haqqi, Resident department of psychiatry,Aga Khan University Hospital, Karachi,
Send response to journal: Re: Stigma and psychiatry
The authors have done a good job in highlighting a rather controversial issue that has been a center of century long debates globally. Stigma and psychiatry go hand in hand. In my opinion,the tendency to stigmatize seems to be deeply rooted in human nature as a way of responding to people who appear or behave differently. Stigmatization is based on the fear that those who seem different may behave in threatening or unpredictable ways, and it is reduced when it becomes clear that the stigmatized person is unlikely to behave in ways that were expected. Having said that, one must also remember that all Psychiatric diagnosis are based on reliable diagnostic tools (whether DSM-diagnostic and statistical manual or ICD-international classification od disease) with established reliability and validity, and the treatment would also be planned according to the established guidelines. However, one does wonder, would changing the name of schizophrenia to some other entity would have any benefits in removing the stigma attached to it ? or would changing the name be beneficial in modifying the treatment modalities ? some questions that still remain unanswered.
Competing interests: None declared

What’s wrong with the term “Schizophrenia”?
23 January 2007

Niraj Ahuja, Consultant Psychiatrist/Honorary Clinical Lecturer Northumberland, Tyne and Wear NHS Trust, NE28 7PD, Andrew J Cole, Consultant Psychiatrist/Honorary Clinical Lecturer and Associate Medical Director, Northumberland, Tyne and Wear NHS Trust
Send response to journal: Re: What’s wrong with the term “Schizophrenia”?

The recent report in the Guardian(1), citing Prof. Bentall’s comments, argues that the term schizophrenia should be abolished. The arguments used in the report include poorer outcomes in the developed world, stigma attached to the “label” of schizophrenia, and the fact that it does not define a specific illness.

The attempt to rename schizophrenia is reminiscent of the letter by Kellner and Ramsey(2) calling for abolishment of the term ECT. We agree with the arguments put forward by Lieberman and First(3) and we respond in the similar vein as the previous response to renaming ECT(4).
To our minds, there appear to be three main options.

The first option is to change the name as soon as possible and “hide” behind the new label, avoiding any hint of the terms mind or brain. However, it is really foolish to expect the newfangled term to be devoid of any stigma.

The fact the term “epilepsy” consists of a collection of multiple disorders and is often perceived to be stigmatizing, has not led to its premature demise. The new name is very likely to be as unpopular as were Koch’s and Hansen’s for tuberculosis and leprosy, respectively(4). The media and general public are still likely to call it schizophrenia and the public will wonder what we are defensive about.

The second option is to keep the present name till there is hard scientific evidence that the present name is best replaced by another name(s). Even while renaming dementia praecox as Schizophrenia, Eugene Bleuler(5) had indicated that it is a group of conditions. It is widely acknowledged that it is unlikely that schizophrenia represents a single disease entity. However there has been a considerable amount of work done in clarifying its core symptoms and improving the specificity and sensitivity of its diagnosis.

The term schizophrenia serves to communicate a meaningful set of signs and symptoms, outcome, prognosis, and treatment options to most clinicians and researchers through the world. This represents one of the core purposes of diagnosis and classification in psychiatry.

Whilst keeping the term schizophrenia, it is of paramount importance to educate the public, patients and carers about the current understanding of the condition and work proactively towards de-stigmatizing not only schizophrenia but also all psychiatric disorders.

The third option is of course to change the name of the condition and work towards public education and de-stigmatization.

For example, the Japanese classification has renamed schizophrenia as “integration disorder” in 2004(6). The change appears understandable in the light of translation of the word “schizophrenia” in to Japanese, as “Seishin Bunretsu Byo” means “mind-split-disease”(7). It is not difficult to see as to how the term would seem pejorative to the patients and their families. The new term “Togo Shitcho Sho”, with the meaning of “integration disorder”, seems therefore more positive to the patients and their families.

One of the dangers of such an exercise is that “nicer sounding names” would replace the pre-existing term without adequate scientific data. To argue against another term suggested for replacing schizophrenia, “dopamine dysregulation disorder”, there is a substantial body of evidence to suggest that there is more than dopamine that is dysregulated in schizophrenia. There is therefore a peril of plethora of names emerging for the same condition, as none of these would have an evidence base supporting the change in name. It would certainly be a retrograde step to rename schizophrenia without the backing of valid scientific data.

We suggest that we need to focus on psycho-education, which is crucial to remove the stigma of having a serious mental disorder. For this purpose, we do not need to hide behind novel labels.

1. Boseley S. Call to wipe out schizophrenia as catch-all tag. Guardian, 10 October 2006.
2. Kellner CH, Ramsey D. Please, no more “ECT”. Am J Psychiatry 1990; 147: 1092-1093.
3. Lieberman JA, First MB. Renaming schizophrenia. BMJ 2007; 334: 108.
4. Ahuja N. What’s wrong with “ECT”? Am J Psychiatry 1991; 148; 693- 694.
5. Bleuler E. Dementia praecox, oder die Gruppe der Schizophrenien (Dementia praecox or the group of the schizophrenias) Leipzig, Germany: Franz Deuticke, 1911.
6. Sugiura T, Sakamoto S, Tanaka E, Tomoda A, Kitamura T. Labelling effect of Selshin-bunretsu-byou, the Japanese translation for schizophrenia: an argument for re-labelling. Int J Soc Psychiatry 2001; 47: 43-51.
7. Sato M. Renaming schizophrenia: Japanese perspective. World Psychiatry 2006; 5: 53–55.
Competing interests: None declared

Schizophrenia can and should be renamed
23 January 2007

David G Kingdon, Professor University of Southampton, Royal South Hants Hospital, Southampton SO14 0YG, Lars Hansen, Yoshihiro Kinoshita, Farooq Naeem, Shanaya Rathod, Maged Swelam, Selveraj Vincent

Send response to journal: Re: Schizophrenia can and should be renamed

Lieberman and First1 make the case against renaming schizophrenia on the grounds that changing the term would not change the stigma attached to the underlying condition. Yet renaming is a key strategy used by marketing and public relations industries to improve image, alongside attitude change and education, as happened successfully when the National Schizophrenia Fellowship became RETHINK. Similarly many stigmatised terms have been replaced to good effect, e.g. idiot, retard, spastic and, recently, manic depressive with bipolar disorder.
But what should it be replaced with? Over the century since ‘the group of schizophrenias’ were first described by Bleuler, there has been much discovered about the conditions involved. Evidence of genetic influences and abnormalities in brain structure does indeed exist but these are not specific to schizophrenia such that one of the conclusions emerging from the ‘Deconstructing psychosis’ conference, part of the DSMV Prelude project was for ‘replacing the current categories with a general psychosis syndrome’2. However this would increase still further the heterogeneity that currently bedevils biological and psychosocial research, clinical practice and resource management when differentiation is really needed.
Trauma has recently been recognised as relevant to a significant group of patients with this diagnosis3 probably because disclosure has now become much more acceptable. Since the 1950’s, a new group has also been included to broaden the diagnosis further; those in whom there is an association with hallucinogenic drugs4. They probably have a lower incidence of negative symptoms, poor adherence to medication and higher risk of harm to others. Renaming and differentiation of these two groups (‘traumatic’ and ‘drug-precipitated psychosis’) is clinically possible from those patients who develop systematised delusions and those who seem to be particularly vulnerable to stress (‘sensitivity psychosis’). In a study of the use of these terms with medical students (n=241), we found that they were associated with reduced perception of dangerousness and much increased expectation of recovery than ‘schizophrenia’.

Most importantly, patients and carers themselves, when asked, find the term unacceptable5, demoralising6 or unusable7. (It was their views that led to the adoption of ‘Integration disorder’ in Japan.) The development of DSMV and ICD11, due for publication in 2011, provides an opportunity now to develop more accurate, specific and acceptable terminology as part of broader efforts to reduce stigmatisation.

(1) Lieberman JA, First MB. Renaming schizophrenia. BMJ 2007; 334(7585):108.
(2) First MB. Deconstructing psychosis. (Accessed 20/1/2007).
(3) Read J, Agar K, Argyle N, Aderhold V. Sexual and physical abuse during childhood and adulthood as predictors of hallucinations, delusions and thought disorder. Psychology and Psychotherapy: Theory, Research and Practice 2003; 76(1):-22.
(4) Hall W. Is cannabis use psychotogenic? The Lancet 367(9506):193- 195.
(5) Kingdon D, Gibson A, Turkington D, Rathod S, Morrison A. (in press) Acceptable Terminology and Subgroups in Schizophrenia: an Exploratory Study. Social Psychiatry and Psychiatric Epidemiology 2006.
(6) Rathod S, Kingdon D, Smith P, Turkington D. Insight into schizophrenia: the effects of cognitive behavioural therapy on the components of insight and association with sociodemographics - data on a previously published randomised controlled trial. Schizophrenia Research 74(2-3):211-9, 2005.
(7) Beveridge A. Psychiatry in Pictures. Br J Psychiatry 2006; 189:A10.
Competing interests: None declared

De-stigmatising Schizophrenia
23 January 2007

James Paul Pandarakalam, consultant psychiatrist, 5 Borough Partnership NHS Trust St Helens North CMHT, Peasley Cross Resource Centre, St Helens, Merseyside WA 9 3DA
Send response to journal: Re: De-stigmatising Schizophrenia

The editorial of Lieberman and First have raised interesting points 1. Psychiatric classification is essentially based on the clinical features of individual disorders. There has been attempts to make etiological diagnosis on a few limited conditions involving organic causes but they were unrewarding. Psychiatric diagnosis is meant for communication purposes among the professionals but laypersons are using psychiatric diagnosis and symptoms with different meanings. These illnesses are poorly understood by lay persons in terms of their level of recognition and understanding of the symptoms and nature of mental illness, a situation that has contributed to the stigma of schizophrenia. The general public still thinks that the term schizophrenia means “split personality” without realising the professional meaning that it refers to dissociation between thinking and emotions. When it was initially introduced, the term schizophrenia gave a “medical refuge” to the afflicted patients who were once thought to be possessed by evil spirits; a labelling that carried its own stigma before the medical era. Yet the new nomenclature began to incorporate a stigma as the illness was considered incurable and debilitating like a cancer of the mind. In spite of the vast cybernetic literature available on the subject, the stigma is still very much alive both among the lay public and within the medical profession.
Depression has social acceptance now; bipolar disorder is also getting some social acceptance because of the recent media claim that it is associated with creative achievement and many a media celebrities have publicly claimed to be sufferers of the condition. People have started using terms like “paranoid, manic etc” in colloquial language, a sign of liberation from the fear of psychiatric symptoms. The film “Beautiful mind” does not appear to have much impact on reducing the stigma associated with schizophrenia.

Stigma is not without some usefulness in preventing manipulation. Imagine the hypothetical situation that psychiatric illness has no stigma at all. As most of the psychiatric symptoms except formal thought disorder can be feigned, but for the stigma attached to psychiatric disorders, many normal people would have faked mental illness for personal gains, and the number of psychiatric patients would have been apparently far higher now. Stigma is unfortunately unhelpful for the genuine patients but advantageous for the gatekeepers of psychiatric services.

The dopamine blockade hypothesis is 40 years old and still underpins much contemporary theorising. From an etiological perspective, probably the renaming of schizophrenia as a “Dopamine dysregulation disorder” might have been reasonable but cannot guarantee that the new name would de- stigmatise the illness. The best way of overcoming the stigma of this illness is finding the true aetiology and a new treatment method that would promise a permanent cure. Historically, Pellagra psychosis was also grouped under schizophrenia but disappeared from the scene once the cause and cure was found out. It is hoped that in a later stage of research with stem cells, radically therapeutic and preventive interventions are likely to happen in complex brain conditions like schizophrenia promising light at the end of the tunnel 2. We may be able to rename the illness more accurately at that period of scientific advancement and remove the stigma altogether.
1.Lieberman A Jeffrey (2007) Renaming schizophrenia. BMJ, 334:108. 2. Thomson JA, et al (1998) Embryonic Stem cell lines derived from human blastocysts. Science, 282:1145-1147
Competing interests: None declared
Renaming Schizophrenia; stigma and semantics
23 January 2007

Daniel V Riordan, Consultant Psychiatrist New Craigs Hospital,, Leachkin Road, Inverness, IV3 8NP
Send response to journal: Re: Renaming Schizophrenia; stigma and semantics

One of the arguments in favour of renaming schizophrenia, not mentioned by Lieberman and First 1, is that the word is a confusing misnomer 2. Derived from the Greek for “split mind”, it was coined as a descriptive term in the early twentieth century, when our understanding of the phenomenon was very different to what it is today.
The semantics would be irrelevant were it not that the word is often understood by the public as referring to split or dual personality, suggestive of Jekyll and Hyde characters who are dangerously unpredictable. We health professionals may be well aware that this is not a valid description of the relatively common psychotic disorder, but this is an insight not shared by all.

The word is stigmatising in an unusual way, in that much of the negative public associations are not a result of the medical usage, but of the (semantically legitimate) usage in another context altogether. It is often used by those who wish to criticise perceived inconsistencies in the behaviour of others. It is difficult to think of the name for any other medical condition which, as a result of an alternative meaning, is used in common speech in such a derogatory manner.

The concept of schizophrenia is indeed useful and almost certainly valid. Unfortunately, in this case, semantics are a problem which should not be ignored.

1. Lieberman J.A and First M.B. BMJ 2007; 334:108
2. Riordan D.V. “Split personality” and the stigma of schizophrenia. Irish Journal of psychological medicine 2005; 22(4): 156.
Competing interests: None declared
Change is required; but name or attitude?
23 January 2007

Arnob Chakraborti, Addiction Psychiatry SHO St. George's Hospital, Stafford ST16 3AG, Luay Kafienah, CAMHS Senior House Officer
Send response to journal: Re: Change is required; but name or attitude?

Dear Editor
Mental illness attracts attention from lay people or professionals alike, and rather fortunately or unfortunately, from the media. The general public always had a concept of madness – and the ICD 10 F20s diagnosis of Schizophrenia fits well into the same. Whilst the biological concept appears more prevalent in developed societies compared to the lesser developed and supernatural believing ones, the general attitude towards mental symptoms is a negative one. Be it the enduring, unresponsive nature of the illness or the un-understandable, implausible symptoms or behaviour. Also, the much highlighted incidents of violence and attacks by people with mental illness have generated, but very sadly, a stereotype. Stigma is highly prevalent among people labelled with mental illness in the community (1).

We agree with the authors Lieberman and First that establishing a correct diagnosis and then initiating appropriate treatment is much more important than the name of the illness. The stigma is attached to the unexplainable presentations of schizophrenia that deviate from the ‘normal’. The stigmatised one at some point does realise this different status. And this further constitutes a detriment towards return to ‘normalcy’, restriction of social networking (2), social rejection and self-deprecation (3), impaired functioning and recurrent stress. There is ample evidence to suggest higher relapse of schizophrenia living in a hostile and critical environment compared to an accepting one (4).
We also believe that the answer lies in a change of attitude. Public attitude, corrected through imparting correct information, dispelling beliefs, stereotypes and fears. The media should as well take on an active role upon itself, imparting knowledge, preventing stigmatisation and undoing the incorrect. Even elaborate and definitive steps similar to the suicide prevention WHO resource for the media professionals may be necessary (5), which may hopefully establish some guidelines on how to and how not to report incidents involving the mentally unwell.
And to talk of wrong names and medical incorrectness, malaria still stands for ‘foul air’.

(1) On stigma and its consequences: evidence from a longitudinal study of men with dual diagnosis with mental illness and substance abuse. Link BG, Struening EL, Rahav M et al, 1997. Journal of Health and Social Behaviour 38:177 – 190
(2) Making it crazy: an ethnography of psychiatric clients in an American community. Estroff S 1981. University of California Press, Berkeley.
(3) From the mental patient to the person. Barham P, Haywood R 1991. Routledge, London.
(4) Influence of family life on the course of schizophrenic disorders: a replication. Brown GW, Birley JL, Wing JK 1972. British Journal of Psychiatry 121: 241 – 258
(5) Preventing suicide: A report for media professionals - Mental and Behavioural Disorders, Department of Mental Health, World Health Organization, Geneva 2000
Competing interests: None declared
This is related to stigma
25 January 2007

Vivek Furtado, Senior House Officer Leeds Mental Health Trust
Send response to journal: Re: This is related to stigma

The media article cited goes on to prove that the way we perceive Psychiatry has not changed. Labels or diagnosis in Psychiatry is inherently stigmatizing and people would prefer to shy away from such a diagnosis.
Considering the current controversies regarding the biological basis of the illness, it would be unwise to change the label to something which we are even more unsure of.
We must always bear in mind that most psychiatry illness are diagnosed on the basis of symptom clusters rather than a fundamental biological change. With this view do we still want to change the name of an illness?
Competing interests: None declared

Renaming schizophrenia: open up the debate
28 January 2007

Robert H Chaplin, Consultant Psychiatrist Warneford Hospital, warneford Lane, Oxford OX3 7JX
Send response to journal: Re: Renaming schizophrenia: open up the debate

Lieberman & First1 argue that schizophrenia should not be renamed as it is a valid diagnostic category, it has many treatment options with a sound evidence base and there are valid and reliable diagnostic criteria. These assertions would not be disputed by the vast majority of those working in mental health services. These are reasons, though, to keep the diagnostic category rather than the name of it unchanged. They are quite correct that the name is less important than its diagnosis or treatment. However, many patients and carers are unhappy with the name.2

The main problem with the name, schizophrenia, is not that it is ‘politically incorrect’ but just incorrect. The concept of a ‘split mind’ is not supported by scientific advances and it is therefore unhelpful to apply this concept to people with the disorder any more. The argument that the name of a diagnosis has stood the test of time is no reason not to modernise it. For example, in the ICD-10 the diagnosis of hysteria has been replaced by categories of dissociative or conversion disorders.3 In the UK the term mental handicap has been changed to learning disability by the Royal College of Psychiatrists and the new term is now in popular usage. Schizophrenia should not be exempt from the same processes.
Other interesting evidence that informs the debate about a possible name change for schizophrenia comes from psychiatrists. According to Clafferty et al4, psychiatrists don’t tell their patients the diagnosis frequently enough. In a postal questionnaire they found only 59% of psychiatrists informed their patients of a diagnosis of schizophrenia after a first episode, and 15% said they would not use the term schizophrenia. Moreover, 43% stated they felt uncomfortable about it and 10% felt it may harm the therapeutic alliance. In my own research, I found further evidence that psychiatrists are cautious about telling a patient their diagnosis of schizophrenia. In this qualitative study of psychiatrists’ views about their practices, some stated that they opted to preserve the therapeutic alliance by finding common ground or circumventing the diagnosis, tried to minimise the impact of symptoms, and exercised considerable judgement about the exact language and timing of a discussion of diagnosis.5

It should be acknowledged that the stigma associated with schizophrenia would not be abolished by a name change. This is supported by a Chinese study.6 Students did not display any less stigmatising attitudes to a vignette of a person with schizophrenia whether give a diagnosis of schizophrenia, an alternative diagnosis or no diagnosis. Conversely a label of schizophrenia generated more positive attitudes amongst students with religious beliefs.

The issue of stigma is further complicated by patient’ own internal working models. There can be a perception of stigma by people with mental illness in addition to the actual attitudes expressed by other people. This can lead to psychiatrists avoiding the term so as not to stigmatise their patients. The avoidance of the term schizophrenia can lead to alternative terms being adopted by patients and psychiatrists. Examples are ‘Neuro Biochemical Disorder’ adopted by a patient2 and psychosis commonly used by clinicians. It is therefore necessary to review all the evidence for and against a name change rather than altogether rejecting the idea or adopting an over zealous attitude to change.

The final difficulty is that schizophrenia describes a characteristic, although very diverse, pattern of symptoms. This is in contrast to the diagnoses of anxiety states, mood disorders, eating disorders and learning disability where a central theme is generally present with people who have the conditions. There is no obvious new name, as illustrated by the many different names suggested by clinicians and service users: the survey of names suggested by service users described2 identified over 120 different ones. The participation of people with schizophrenia is central to the debate about a possible name change.
1. Lieberman JA, First MB. Renaming schizophrenia: Diagnosis and treatment are more important than semantics. BMJ 2007;334:108
2. Berg SZ. Changing the S word: is there a better name? Schizophrenia Digest 2006;Fall:30-34
3. World Health Organization ICD-10 Classification of Mental and Behavioural Disorders. Geneva, Switzerland: World Health Organization, 1992
4. Clafferty RA, McCabe E, Brown K. Telling patients with schizophrenia their diagnosis. Psychiatric Bulletin 2001;25:336-339
5. Chaplin R, Lelliott P, Quirk A, Seale C. Negotiating styles adopted by consultant psychiatrists when prescribing antipsychotics. Advances in Psychiatric Treatment 2007;13:43-50.
6. Chung KF & Chan JH. Can a less pejorative Chinese translation for schizophrenia reduce stigma? A study of adolescents’ attitudes toward people with schizophrenia. Psychiatry and Clinical Neurosciences 2004;58:507-515
Competing interests: None declared

Schizophrenia cannot be justified as brain pathology
29 January 2007

D B Double, Consultant Psychiatrist Norfolk & Waveney Mental Health Partnership NHS Trust, Peddars Centre, Norwich NR6 5BE
Send response to journal: Re: Schizophrenia cannot be justified as brain pathology
Lieberman & First justify the concept of schizophrenia as brain pathology.1 However, they admit that the cause of the disorder and the precise pathophysiology are unknown.
Operational diagnostic criteria were introduced in an attempt to improve the reliability of psychiatric categories, such as schizophrenia.2 Despite what Lieberman & First say, the genetic basis of schizophrenia can be challenged.3 It is not clear why they dismiss disturbed psychological development and parenting as factors in aetiology. Nor what abnormalities in brain structure and function they think have been demonstrated on neuroimaging and electrophysiological tests.
The question is whether schizophrenia is an improvement over the mere description of psychotic symptoms. Eugene Bleuler introduced the term in 1911 as an advance over Emil Kraepelin's notion of dementia praecox, as not all schizophrenic patients are "victims of deterioration early in life".4 Bleuler regarded schizophrenia as a functional disorder, although he could not exclude the possibility of "certain mild organic disturbances". He believed it was a disease, which did "not permit a full restitutio ad integrum", and that it was demarcated by the presence of fundamental symptoms which occur only and always in schizophrenia representing "a more or less clear-cut splitting of the psychic functions". Few would now accept this Bleulerian understanding of schizophrenia. And yet the term survives. This is more in the Kraepelinian rather than Bleulerian sense. What is needed is a biopsychological understanding of schizophrenia.5 The danger of focusing on schizophrenia as a biomedical diagnosis is that it may avoid understanding of the person by reducing mental health problems to brain pathology. The justification for retaining the concept of schizophrenia is that it seems to provide some organisation to the classification of psychosis, not because it points to an underlying brain abnormality.

Lieberman JA, First MB. Renaming schizophrenia. BMJ 2007; 334:108. (20 January 2007) [Full text]
Blashfield, R.K. The classification of psychopathology. Neo-Kraepelinian and quantitative approaches. New York: Plenum, 1984
Joseph J. The gene illusion. Genetic research in psychiatry and psychology under the microscope. Ross-on-Wye: PCCS books, 2003.
Bleuler E. Dementia praecox: or the group of schizophrenias. (trans. by J. Zinkin). New York: International Universities Press, 1950
Double DB. The biopsychological approach in psychiatry: The Meyerian legacy. In DB Double (ed) Critical psychiatry: The limits of madness, pp 165-87. Basingstoke: Palgrave Macmillan, 2006.
Competing interests: None declared

Renaming schizophrenia:the need for evidence
2 February 2007

Graham Thornicroft, Professor of Community Psychiatry Institute of Psychiatry, King's College London, Norman Sartorius, Diana Rose and Elaine Brohan
Send response to journal: Re: Renaming schizophrenia:the need for evidence
Dear Dr. Godlee,
Re: Renaming schizophrenia: the need for evidence
We share the caution of Lieberman and First 1 in their leader about renaming schizophrenia. The stigma and discrimination of people given the diagnosis of schizophrenia are grave and influence the quality of their life as well as the course and outcome of the disease 2 3. In other domains of medicine there are numerous examples of name changes which were intended to make a condition more speakable, for example, Hansen’s disease (leprosy), or Down’s syndrome (‘mongolism’), which has changed name repeatedly over the last century without clear data on whether this has been beneficial 4. These debates are rarely illuminated by evidence.
We have recently co-ordinated the INDIGO (International Study of Discrimination and Stigma Outcomes) Study. In 28 countries across the world (full details are available from GT) face to face interviews were completed with 736 people with a clinical diagnosis of schizophrenia. The main purpose of the study was to assess anticipated and experienced discrimination. Several questions related to the name of the condition. In reply to the question ‘Do you know what diagnosis your doctor has made?’ 83% answered yes. To the question ‘Do you agree with the diagnosis?’; 72% agreed, 17% disagreed and 10% were unsure. For the question ‘How much has it been an advantage or disadvantage for you to have the specific diagnosis of schizophrenia?’ 54% reported disadvantage, 26% advantage (eg in directing them information on the condition, or to a self-help group), and 18% reported no difference.
It is also notable that after the renaming of schizophrenia in Japan the proportion of such people who were told the name of their condition increased from 8% to 60% 5. Nevertheless a change of name should not happen alone: it would be of central importance to introduce a number of changes into the legislation, services and education of professionals and of the public if we wish to improve the way in which people with schizophrenia have to live. Changing the name of schizophrenia would in that instance probably be beneficial because it would be an indicator of change rather than the change. In particular, before initiating far- reaching changes in psychiatric terminology it is vital to have clear evidence of any benefit, particular from the perspective of people with schizophrenia.

Graham Thornicroft, Norman Sartorius, Diana Rose and Elaine Brohan.
(1) Lieberman JA, First MB. Renaming schizophrenia. BMJ 2007; 334(7585):108.
(2) Sartorius N, Schulze H. Reducing the Stigma of Mental Illness. A Report from a Global Programme of the World Psychiatric Association. Cambridge: Cambridge University Press; 2005.
(3) Thornicroft G. Shunned: Discrimination against People with Mental Illness. Oxford: Oxford University Press; 2006.
(4) Jain R, Thomasma DC, Ragas R. Down syndrome: still a social stigma. Am J Perinatol 2002; 19(2):99-108.
(5) Kim Y, Berrios GE. Impact of the term schizophrenia on the culture of ideograph: the Japanese experience. Schizophr Bull 2001; 27(2):181-185.
Competing interests: None declared


Blogger Spiritual Emergency said...

An article (and blog) that may be of interest...

Bias and Stigma Within the Mental Health Community?

2:50 AM  
Blogger Stephanie said...

Re: Renaming schizophrenia: the need for evidence – 2/4/07

The article discussed the possibility of renaming the abnormal behavior referred to as schizophrenia because of the stigma attached to it. First, there will always be a stigma attached to any mental disorder regardless of the name it is given and the educational material disseminated about it. Classifying something as abnormal to begin with and separating it into its own category sets the stage for people to look at those in that category as different, weird, and outside the norm. Secondly, even if the name is changed, people will still attach the same stigma to the new name once they learn of the name change. It will carry the same negative connotations as the word “schizophrenia.” Are mental health professionals supposed to change the name of disorders every 10 or 20 years to prevent this from happening? Educational programs can be launched to change the way people think about mental illness and the new name, but there will be millions of people who are not reached. I am sure that those of lower socioeconomic status will be overlooked. The schools they attend and the curriculum offered is not the best and some of them do not pursue higher forms of education or learn about other topics. Moreover, the media and entertainment industry often exaggerates things in news stories and movies in order to make it more appealing to the public. I believe that people “learn” a lot from watching television and unfortunately, the most accurate depiction of mental illness is not always portrayed.

Third, some patients experience negative reactions from others because of their reactions to their own diagnosis. By thinking that people will react negatively toward them, they may actually behave in ways that bring about social rejection through “self fulfilling prophecy.” Schizophrenics may try to avoid acknowledging that they have the illness by refusing to seek treatment. This will undoubtedly only aggravate their symptoms. By allowing their abnormal behavior to go untreated and, perhaps by acting out in public, they only add to the negative ideas people have of them. Fourth, and perhaps most importantly, there are a lot of other medical conditions and societal classifications that carry negative connotations. People in these groups report prejudice and disadvantages as well but no one has made any attempt to change the name of the condition they live with or group that they fall in. Patients living with HIV/AIDS face discrimination everyday when people find out they are carrying the viruses, especially if they are not educated about how it is contracted and spread. Some people who are diagnosed are unwilling to accept their illness and are afraid to tell others about it. Long story short, if mental health care professionals want to eliminate the stigma attached to certain illness, then the same should be done for all other illness. But then again, this would not be the most practical thing to do. In order to avoid being stigmatized for being schizophrenia, one should seek the appropriate therapeutic and medicinal help so they do not display symptoms that others so often describe as “weird.”

Stephanie B.
JLS 333 – 001
Spring 2007

9:55 PM  
Blogger Spiritual Emergency said...

Re: What's in a Name...

As far as the human condition goes my experience is not a common one although neither is it radically uncommon. It occurs in roughly 1 in 100 people, which is enough for the majority of people to sidestep it entirely, yet still know someone who's gone through this kind of experience. Typically, when it does happen, you go to the hospital yourself or someone takes you -- willingly or unwillingly. It's at the hospital that you learn to speak the language of the medical model. That's where my own experience differs from so many others because I didn't go to the hospital and I didn't learn the language. Instead, I came into this room I am sitting in right now, I locked the door behind me, and I committed myself to the experience. I recognized something beneficial within the process I had fallen into.

Some of the names for my experience in this culture and setting are: the acute schizophrenic break; positive disintegration; post traumatic stress disorder with psychotic features; an acute psychotic episode; the psychotic-visionary episode; and, transpersonal crisis. Some of the names for my experience in other cultures and settings are: the dark night of the soul; kundalini awakening; the night sea journey; gnosis; mysticism; shamanistic initiation; spiritual awakening; self-realization; the hero's journey; the inner apocalypse; ego death; the alchemical process; individuation; and, spiritual emergency. I need to clarify those terms because some people don't understand what I'm talking about, they don't speak my language either.

Source: How This Blog Got Started

6:21 AM  

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