Challenging Dogma - Fall 2007

...Using the social and behavioral sciences to improve the practice of public health.

Wednesday, December 12, 2007

The Public Health System’s Contributions to Stigma and Discrimination in Mental Health Impacting Full Recoveries from Mental Illness- Jennifer Jolivet

Mental Health America defines mental illness as a “disease that causes mild to severe disturbances in thinking, perceptions, and behavior” and classifies disorders into 5 major categories: anxiety, mood, and eating disorders, dementias, and schizophrenia. Mental illnesses are extremely prevalent in the US with more than 54 million Americans suffering from 1 or more mental disorders (1). Mental illnesses can be extremely disabling, and they affect all genders, ages, and races. According to a report by the Surgeon General, mental disorders account for more than 15% of the overall burden of disease from all causes and slightly more than the burden associated with all types of cancer (2). Unfortunately, mental health has not been regarded as important as physical health, and people suffering from a mental illness have long been subjected to hostility, discrimination, and stigma (1). Stigma and discrimination can trace their roots back to the ideas of separating the mind from the body in terms of importance and treatment. These influences continue to affect thinking today because the public health system has not done an adequate job of changing public opinions created by past public health practices and the media. There are many ways the public health system has done an insufficient job with regard to managing mental illness, but there are 3 ways that are especially significant because they help continue stigmatization and make it difficult for people to receive treatment: People with mental illnesses suffer from stigmatization from health professionals, there is a huge disparity in access to service in the form of financial barriers to those that need help, and the public health system has not successfully combated the media’s negative portrayal of people with mental illness. The public health system has failed those with mental illness because mental illness in public health has not been treated with the same respect and concern as other diseases like cancer. Mental illnesses can have a significant negative impact on many people in the US, and due to this, mental illness is a public health problem that cannot be ignored by the public health system anymore (2).

Mental illnesses have long been associated with many negative stereotypes, including violence, dangerousness, unpredictability, uncontrollability, and craziness. The phenomena of mental illness stigma can be explained by the labeling theory. According to this theory, the self identity and behavior of an individual is influenced by societal norms. Society has established a set of rules that dictate what normal and usual behavior is, and those who violate the rules are abnormal. People with mental illnesses cannot always act the way society believes is correct and because of this, the general public views people with mental illness as having something wrong with them, allowing stereotypes to develop. The public’s attitudes on mental illness have been tracked since the 1950’s and not much has changed concerning stigmatization. In the 1950’s people viewed mental illness as a stigmatized condition and those with extreme behaviors, psychosis, were viewed as mentally ill and were stigmatized as unpredictable and violent (2, 3). A similar study by Phelan et al. (4) in 1996 revealed the public had an increased scientific understanding of mental illness. However, social stigma was stronger than what it had been in the past, especially concerning psychosis disorders like schizophrenia. In the 1950 study, 13% of the responders who defined mental illness to include psychosis stigmatized mental illness with violence, while in 1996, 31% of the responders did so, indicating people today still fear that those with mental illnesses are dangerous even though this idea is largely unfounded (2).

For a person with a mental illness, constantly being shunned and viewed differently by employers, health professionals, family, and strangers, no matter how minor it is, can take an emotional toll. Stigma causes people to distrust, fear, avoid, and discriminate against people with a mental illness. Those who suffer from a mental illness often do not seek treatment because of the embarrassment of being labeled mentally ill. There is shame, isolation, and blame due to stigma. By not seeking treatment, people do not learn ways to manage their diseases, greatly impacting their way of life. Mental disorders are biological in nature and not all can be cured, but stigmatization caused by labeling creates adverse effects in equality, treatment, and overall outcomes for people suffering from mental illness. The long term consequences of stigmatization prevent many people with mental illness from recovering and leading successful lives (5, 6, 7).

HISTORY OF PUBLIC HEALTH’S CONTRIBUTION TO STIGMATIZATION OF THE MENTALLY ILL IN THE US
Historically, mental illness in the public health system has not been treated as a “real” biological disease, and this mistreatment helped establish the stigma associated with it that continues today. Early on, philosophers, most notably Rene Descartes, taught people to separate the mind from the body because the mind was not as important or rational as the body and the mind acted out of passion. This thinking greatly influenced how mental illnesses were viewed and dealt with. In the 1700’s, people with mental illnesses were called “lunatics” and cared for by families with no medical intervention. In the 1800’s, social policy dictated that those with a mental illness be removed from society because they were afflicted with their disorder for violating physical, mental, and moral laws. The mentally ill were sent to asylums, which were often inhumane places where frequent mistreatment occurred (3). In the 20th century, asylums lost popularity, but just as inhumane events occurred. For example, in the 1920’s, many mentally ill patients were forcibly sterilized, and in the 1940’s and 1950’s, many received lobotomies to remove the damaged brain which often caused even more serious side effects like mental retardation (2, 3).

This separation of the mentally ill from the rest of the public affected the treatment of and attitudes toward the mentally ill. Treatment has evolved over the years from doing nothing to the many therapies and therapeutic drugs of today, but attitudes toward treatment are still very different compared to attitudes toward treatment for publicly accepted diseases like cancer and heart disease. One problem is the mental health field was the repository for disorders whose etiology was unknown. The mental health field in its early origins included diseases that had no scientific understanding or treatment, but as more was discovered about the disease, it was moved to more medically respected departments like internal medicine or neurology. This led many individuals both in the public and medical fields to believe psychiatry was not a part of medicine and not based on reliable science (2). This idea has slowly changed over the past few years, but mental disorders are still not treated equally in the medical community. Compared to other diseases such as cancer, obesity, and heart disease, mental disorders do not receive anywhere near the same level of respect and attention as they have. The public and medical fields view obesity, cancer, and heart disease as biological diseases with symptoms and that they are a burden and life-threatening. Treatment focuses on prevention and rehabilitation, and the public health system has launched numerous campaigns to educate people about eating healthy, exercising, and being pro-active in taking caring of oneself. Obesity no longer has the stigma once associated with it because it is viewed as a very serious disease. Mental disorders have not received this treatment. Even though they affect millions, are life-threatening, and a tremendous burden to more than just the affected person, mental illness is not considered a physical disease because they often do not kill an affected person like leukemia does. People have trouble believing the idea that the mind is just as susceptible to disease as the heart or lungs. A January 2000 article in US Today illustrates this point: under the title “Mental Disorders Are Not Diseases,” Thomas Szasz argues that medical diseases are discovered while mental diseases are invented because medical diseases occur from physical aliments and are diagnosed based on physical abnormalities in the body while mental diseases are patterns of personal conduct and diagnosed on behaviors alone (8). People still believe there is no need for medicine to be involved in mental disorders because the public health system has not done what it has for diseases like obesity: making it socially acceptable for people to get diagnosed and treated because they suffer from a real, serious disease that can affect everyone.

HEALTH PROFESSIONALS CONTRIBUTE TO STIGMA AND DISCRIMINATION
Separating mental health from overall health not only influenced the general public but mental health professionals as well. A reason the public has not significantly changed its opinions about people with mental illnesses is because health professionals themselves stigmatize. There are few studies on this issue, but those that have been conducted reveal a double standard within the field because health professionals do have negative views and discomfort about mental illnesses (9). A study showed psychiatrists have more negative stereotypes than the general public, classifying those with a mental illness as more dangerous, unpredictable, and unreliable compared to the general public. Despite being better educated about the diseases, health professionals also showed the same lack of interest as the general public did regarding social interaction with severely mentally ill, like those suffering from major depression and schizophrenia. Professionals also had different beliefs regarding major depression and schizophrenia, with schizophrenia being viewed more negatively (10). Many mentally ill people already face significant discrimination from the outside world and they do not need more from the people who are supposed to be helping them. Beside continuing the cycle of stigmatization, health professionals’ beliefs deter people from seeking treatment. If the health professionals already have negative thoughts and reactions to their patients, it is difficult to believe there will be unbiased and open dialog and treatment.

Health professionals also add to stigma and discrimination in the way they diagnose patients, especially with regards to culture. Mental disorders are extremely difficult to diagnosis because they rely on patients describing symptoms rather than a definitive test or x-ray. The professional has to work with what the patient describes and see how it compares to different criteria set for disorders, and clinical judgment plays a significant role in final diagnosis. Disorders lie on a continuum, so there is major room for misdiagnosis or over diagnosing (11). Even though professionals are aware of the negative aspects of being labeled mentally ill, in studies they will often misdiagnosis non-cases as being mentally ill with major depression (10). For minorities, the problems they face are increased. Schizophrenia has been shown to affect all racial groups at the same rate, yet African Americans are more than 4x more likely to be diagnosed than whites and Hispanics are 3x more likely to be diagnosed than whites (12). For Asian Americans, under-diagnosing has been suggested as a problem because of the stereotype that they are “problem free” (11). Health professionals are not examining the cultural differences that prevent people from seeking treatment, could be a reason for why treatment is not working, or could be reasonable explanation for the behavior the professional feels is “abnormal.” For example, in some cultures, it is not acceptable to look someone in the eye and a clinician could easily misinterpret this if he/she is not aware of the customs (12). These disparities make mental health treatment appear uninviting, inappropriate, and ineffective (11). If patients do not trust their doctor or believe the doctor did not really listen to what they described, it is reasonable to understand why many people do not seek treatment. The lack of effective communication is a huge problem that prevents people with a mental illness from receiving proper, successful treatment.

To combat these problems that make it difficult for the mentally ill to receive treatment, health professionals need to be better trained and understand their own biases and how they affect treatment. They have to realize how their stigmatization greatly impacts their patients and the public. Professionals also need to be more aware of the cultural differences regarding race, age, and gender, and how these factors influence diagnosis and treatment. Diagnosis and treatment need to be tailored to take into account the cultural differences that influence a patient’s behavior. Creating a treatment that is geared more toward the individual should have more positive results for the person, which in turn will show others they can have more trust in the mental health services (13).

FINANCIAL BARRIERS TO TREATMENT
Isolating mental illness from the rest of the health system has had a significant impact on treatment services for disorders. By not making mental illnesses a priority, access to treatment is severely limited. Although there are numerous and very effective treatment options available for those with mental illness, the ability to pay for them is a huge barrier that prevents many from seeking a mental health specialist. Only one third of people suffering mental illness receive treatment. A survey by the American Psychological Association found Americans cite lack of any insurance coverage (87%) and costs (81%) as the major reasons that keep them from seeking mental health services (14). Even those who have insurance do not often receive treatment because health insurance coverage is more restrictive for mental illnesses than it is for somatic illnesses. Fearing the high costs of long term care, private insurance companies either refuse to cover any mental illness treatment or place limits on coverage. These restrictions include low monetary caps on long term care, high co-payments and deductibles, and low monetary caps on annual care. Medicaid and Medicare place similar restrictions on their mental health coverage. Compared to other general health services, those seeking mental health services pay substantially more out of pocket expenses and face a greater risk of suffering a catastrophic financial loss when care costs exceed insurance limits. Economic study models describe this disparity: for a family with mental health expenses of $60,000 a year, the out of pocket cost is $27,000 while the out of pocket medical/surgery costs are $1,800 (15). Insurance companies place people with severe, chronic mental illnesses in a difficult situation where they have to decide whether they take the financial hit and pay for treatment or do not receive treatment because the money has to go somewhere else. These financial barriers prevent many people from seeking and staying in treatment. The lack of interest in making treatment accessible to more individuals with mental illnesses re-enforces the idea that mental illness is not as important as other diseases.

The public health system has to address these financial barriers that are preventing treatment. It is hard to imagine only being allowed to go to the doctor three times if one was diagnosed with breast cancer, but it does happen for those with mental illness. The Paul Wellstone Mental Health and Addiction Equity Act is currently being debated in Congress, and the public health system should be actively campaigning for the passage of this legislation. It aims to stop the discrimination in the treatment of mental illnesses by prohibiting treatment limits and increased financial requirements insurance companies impose on those receiving mental health services (16). Some states have laws that require mental health financing to be on the same level as financing for general health services, and studies indicate total health care costs barely go up. The public health system should use this information to initiate changes in the laws by educating people on the idea that better services will not be as financially burdensome as insurance companies suggest (15).

THE PUBLIC HEALTH SYSTEM IS NOT SUCCESSFULLY CHALLENGING STIGMA
The historic impact of mental illness stigma is still felt today in many ways, and the public health system has begun to realize they have to actively challenge the stigma the mentally ill continually face. They have launched many anti-stigma educational campaigns, but these actions are not enough because stigmatizing opinions are not related to knowledge. As studies show, mental health professionals stigmatize even though they are highly educated on the subject (10). The public health system is failing to use one of the most influential sources to reverse the damage of stigma: the media. The public health system fails in two ways with regards to the media: it has not prevented the media from continuously portraying the stereotypes of mental illness, and they are not affectively using the media to change public opinion. The media plays a tremendous role in stigmatization because it is the primary source of information about mental illness for many Americans. Unfortunately, the media does not always positively portray mental illness and constantly links people with mental disorders with violent behavior and provides inaccurate information on mental disorders. Newspapers overwhelming focus on the dangerousness and criminality of people with a mental illness. A study in 1994 examined 184 prime time shows and found the mentally ill characters were 10 times more violent than the general population of characters, and in crime dramas, the offender had a mental illness in over 50% of the programs. People with mental illness were also portrayed as childlike, laughable, narcissistic, and lazy (17; 18). Rarely is there a mentally ill person who is the hero of a storyline. There is no disclaimer at the end of show where a schizophrenic person was the killer saying this is not the norm. The media reinforces what the general public wrongly believes about the mentally ill, and the public health system has not done a sufficient job in challenging what the media is doing. They are not protesting what is on the shows or providing alternative positive images of the mentally ill, allowing the media to continue supporting stereotypes.

The public health system is not affectively challenging the media because it is failing to understand why the media portrays the mentally ill as it does. The public health system runs an anti-stigma ad but then the show that follows has a mentally ill person committing heinous crimes. The public health system is competing with the media rather than working with it to get more accurate information out, and they do not appear to be taking into account how influential the media is. By not understanding the types of messages the media is releasing and the reasons for it, the public health system will have a difficult time getting people to be more accepting of the mentally ill. Education alone is not going to reduce stigma because the stereotypes are too deep in the social system. The public health system has to realize that using the media to provide images that portray the mentally ill as real people is an effective way to help people overcome their stigma. This includes having characters that have different disorders not just the most feared ones like schizophrenia and showing how they really function in society as well as not always making the mentally ill the bad guy (17).

There are many examples the public health system can look at to develop a better anti-stigma campaign. For example, tobacco is an example where the media has helped change what is socially accepted behavior. In movies and television, smoking by major characters is not as common as before. Educational campaigns focus on giving the public power to demand change and take charge rather than using fear or blame. This model could be used to create messages that motivate people to stand up against stigma rather than scolding them for it. There are some examples in the mental health field as well. Drug companies have helped start to change opinions on depression. There are ads for treatment on television as often as ads for Viagra. The commercials are a step toward reducing mental health stigma by showing everyone can get depression but that with help, the person can take back control of his/her life. In addition, numerous celebrities have publicly come out and discussed their battle with depression in the media and how they sought treatment to overcome it. Celebrities help show people that everyone is susceptible to mental illness. They can also help reduce stigma by showing if they can acknowledge their problem as public figures, there should be no shame for regular people to do it as well. As Mike Wallace of 60 Minutes stated when discussing his severe depression, “there’s nothing, repeat, nothing to be ashamed of when you’re going through depression” (19). The public health system needs to model anti-stigma campaigns after these successful media interventions. The public health system can use the media to make the public aware, concerned, and interested in mental illness. By changing public opinions, this will initiate changes in public health policy that will allow better and more accessible treatment because mental illness will not be an afterthought with regards to health.

People with mental illnesses suffer beyond just their disease. Because of how they have been treated in the past, problems persist today. Mental health professionals contribute to the stigma, financial burdens prevent many from receiving treatment, and the public health system is not using the most effective way to reduce stigma. Mental illness affects millions of people, costs billions of dollars, and is just as devastating as other diseases; therefore it deserves the same level of attention and respect. The public health system is increasing its part in challenging stigma, but it needs to do more. Health professionals need to understand their role in stigma and how it negatively affects treatment. Mental health service should be financed on par with general health services. Making these changes in policies will help change public opinion because mental health will finally be viewed as an important aspect to overall health. The general public also needs to be educated on more than just the scientific aspects because people’s stereotypes are just too strong. Education that shows people the mentally ill are not as frightening as they thought they were is what will illicit changes. Using the media will be a powerful way to get this new message across because the media is what helped make the stigmatization so strong. Fighting stigma will help those with mental illness finally receive the quality treatment they deserve.

REFERENCES
1. Mental Health America. Stigma: Building Awareness and Understanding. http://www.mentalhealthamerica.net/go/action/stigma-watch.
2. Surgeon General. Introduction and Themes. In Mental Health: A Report of the Surgeon General, 1999. http://www.surgeongeneral.gov/library/mentalhealth/pdfs/c1.pdf.
3. Link, B., Phelan, J.C., Bresnahan, M., Stueve, A., and Pescosolido, B.A. Public Conceptions of Mental Illness: Labels, Causes, Dangerousness, and Social Distance. American Journal of Public Health 1999; 89: 1328-1333.
4. Phelan, J., Link, B., Stueve, A., and Pescosolido, B. Public conceptions of mental illness in 1950 in 1996: Has sophistication increased? Has stigma declined? August 1997. Paper presented at the meeting of the American Sociological Association, Toronto, Ontario.
5. SparkNotes. Introduction to Abnormal Psychology. http://www.sparknotes.com/psychology/abnormal/intro/labelingtheory.html.
6. Link, B.G., Yang, L.H, Phelan, J.C., and Ciollins, P.Y. Measuring Mental Illness Stigma. Schizophrenia Bulletin 2004; 30: 511-541.
7. Lamb, H.R. Review of Being Mentally Ill: A Sociological Theory, 3rd ed., by Thomas J. Scheff. American Journal of Psychiatry 2002; 159: 513-514.
8. Szasz, T. Mental Disorders Are Not Diseases. USA Today (Society for the Advancement of Education). January 2000. http://findarticles.com/p/articles/mi_m1272/is_2656_128/ai_58576581.
9. Sriram, T.G., and Jabbarpour, Y.M. Are Mental Health Professionals Immune to Stigmatizing Beliefs? Psychiatric Services 2005; 56: 610.
10. Nordt, C., Rossler, W., and Lauber, C. Attitudes of Mental Health Professionals Toward People with Schizophrenia and Major Depression. Schizophrenia Bulletin 2006; 32: 709-714.
11. Surgeon General. The Fundamentals of Mental Health and Mental Illness. In Mental Health: A Report of the Surgeon General, 1999. http://www.surgeongeneral.gov/library/mentalhealth/pdfs/c2.pdf.
12. Vedantam, S. Racial Disparities Found in Pinpointing Mental Illness. Washington Post. 28 June 2005. http://www.washingtonpost.com/wp-dyn/content/article/2005/06/27/AR2005062701496.html.
13. Surgeon General. A Vision for the Future. In Mental Health: A Report of the Surgeon General, 1999. http://www.surgeongeneral.gov/library/mentalhealth/pdfs/c8.pdf.
14. Bossolo, L. Most Americans List Lack of Insurance Coverage for Not Seeking Mental health Services. American Psychological Association. http://www.apa.org/releases/insurance.html.
15. Surgeon General. Organizing and Financing Mental health Services. In Mental Health: A Report of the Surgeon General, 1999. http://www.surgeongeneral.gov/library/mentalhealth/pdfs/c6.pdf.
16. Wellstone Action. End Discrimination-Help Us Pass the Wellstone Bill! http://www.wellstone.org/network/article_detail.aspx?itemID=9229&catID=2796
17. Stout, P.A., Villegas, J., and Jennings, N.A. Images of Mental Illness in the Media: Identifying Gaps in the Research. Schizophrenia Bulletin 2004; 30: 543-561.
18. Byrne, P. Stigma of Mental Illness and Ways of Diminishing It. Advances in Psychiatric Treatment 2000; 6: 65-72.
19. CBS. Depression. CBS Cares. http://www.cbs.com/cbs_cares/depression/.

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