Sunday, August 07, 2005

Stigma of Schizophrenia

Grand Rounds

Cover art - click for captionThe latest issue of PLoS Medicine contains a short open-access article, The Global Fight against the Stigma of Schizophrenia.  The authors, Nadia Kadri and Norman Sartorius, coordinate the World Psychiatric Association's global program to combat the stigma of mental illness.  Their program, Open the Doors, specifically targets the stigma associated with schizophrenia.  

The authors point out that "The stigma attached to mental illness is the greatest obstacle to the improvement of the lives of people with mental illness and their families."  The implied significance of this is that the single most important advance for improving the lives of persons with schizophrenia will not come from the laboratory; it will come from changes in society.  

The WPA's effort differ from previous, similar programs, it that it is intended as an ongoing effort, rather than a time-limited campaign.  The international scope of the effort is intended to help generate and spread new ideas.
[I]t emphasises the need for sharing experience and information obtained in the course of the programmes among all concerned, within and between countries.
In addition, it emphasizes collaboration with family and patient advocates and advocacy groups.  They state that their central focus, possibly the most important element of the program, is upon boosting the self-esteem of patients and families.  One of the things that they have learned, is that success takes years of continuous effort.  Empirical measures of the success of such programs often have been disappointing; in their words, the initial efforts "often produce only meagre results."  

The Open the Doors website lists some of the specific misconceptions that contribute to stigma:
  • Nobody recovers from schizophrenia.
  • Schizophrenia is an untreatable disease.
  • People with schizophrenia are usually violent and dangerous.
  • People with schizophrenia are likely to infect others with their madness.
  • People with schizophrenia are lazy and unreliable.
  • Schizophrenia is the result of a deliberate weakness of will and character ("the person could snap out of it if he would").
  • Everything people with schizophrenia say is nonsense.
  • People with schizophrenia cannot reliably report the effects of treatment or other things that happen to them.
  • People with schizophrenia are completely unable to make rational decisions about their own lives (e.g., where to live).
  • People with schizophrenia are unpredictable.
  • People with schizophrenia cannot work.
  • People with schizophrenia get progressively sicker all their lives.
  • Schizophrenia is the parents' fault.
On the same page, they list strategies for combating stigma.  In the interest of brevity, I won't reproduce them here, but I do encourage people to read them.

A few comments: one of the unfortunate byproducts of the early research into schizophrenia is the misconception that the parents are to blame.  That belief was fashionable in scientific circles in the 1950's, but no health professionals believe it today.  Yet, the misconception persists.  Some of these misconceptions are not specific to schizophrenia.  In particular, the belief that mental illness is "a deliberate weakness of will and character" is almost universal.  Anyone closely acquainted with such a person should stop and ask: why in the world would anyone deliberately do this to themselves?  

The authors report that they do have some early indications of success, although the specifics still are in publication.  It will be interesting to see what they end up with.  

One of the reasons the WPA's sustained effort is so important is that the funding climate in the USA generally favors quick results.  If they are able to show that it is not reasonable to expect dramatic results in a short time frame, but that an extended effort can be useful, it may encourage funding sources in the US to be a little more generous.  The Open the Doors program is tackling an enormous problem, and it deserves more attention.

Categories: science, medicine
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