Shortfalls of the In Our Own Voice Educational Campaign and an Alternative Campaign for Reducing Stigma in Mental Illness - Elizabeth Thompson
Mental illness is widespread in the United States. According to data available through the National Institute of Health’s National Institute of Mental Health over 25% of adults ages 18 and over are diagnosable for one or more mental disorders in any given year(1). Of the estimated 25% of American adults living with mental illness, 22% are considered severely mentally ill (1). The definition of serious mental illness includes such life altering situations as a suicide attempt in the preceding 12 months, an inability to work, and an impulse control disorder with repeated serious violence, among other things (2). Though the number of people with mental illness is overwhelming, more daunting is that 59% of those people do not receive any treatment for their illness (3).
A major concern, along with the 59% of diagnosed mentally ill who do not receive treatment, is the very large estimated number of people with an undiagnosed mental illness. The number is difficult to estimate, but a study published in 2001 in the Annals of Emerging Medicine was undertaken, in part, to approximate the number of people with a mental illness who go undiagnosed (4). The study showed that while 42% of participating patients entering an emergency room had a psychiatric diagnosis according to a computer administrated PRIME-MD exam, only 5% received a diagnosis from the physician, even when the physician was given the PRIME-MD result (4). This suggests that there are a large number of people diagnosable for mental illnesses who are not.
From these data, it is clear that there are Americans living with serious mental illnesses without treatment, either as people who were never diagnosed or as people who were diagnosed but didn’t receive treatment. Addressing the issues relating to why these people go untreated is an interesting and important public health issue. One explanation for the number of patients going untreated is the stigma associated with a mental health issue. There are programs which state their goal as reducing stigma about mental health issues and thereby breaking down barriers to seek care for those suffering a mental illness. These programs fall short of their goal, however, as will be exemplified by the In Our Own Voice campaign.
In Our Own Voice
The National Alliance on Mental Illness is a grassroots organization founded in 1979. NAMI’s organizational goal is to improve the lives of individuals and families affected by mental illness (5). The In Our Own Voice is a campaign run by NAMI, introduced in 1996 as Living with Schizophrenia. As time went on, people with a variety of mental illnesses participated and the program’s name was changed. Since that time, approximately 2,000 presenters have been trained to conduct an In Our Own Voice presentation and over 200,000 audience members have been reached (5). IOOV is an educational lecture series given by those with a mental illness to the general public at organized speaking engagements. An IOOV presentation is given at the request of an organization. Each IOOV lecture has 5 parts, Dark Days, Acceptance, Treatment, Coping Skills and Successes, Hopes and Dreams (5). The lecture is given by two people, referred to as consumers, who have a mental illness in recovery. Recovery is defined by NAMI as: “the point in someone's illness in which the illness is no longer the first and foremost part of his or her life, no longer the essence of all his or her existence. Ultimately, recovery is about attitude and making the effort” (5). NAMI defines the goal of IOOV as providing education to the public about mental illness by involving those with mental illness.
In Our Own Voice has several drawbacks. The campaign does a good job with regards to the issue of the reducing the self stigma of those with a mental illness diagnosis. It allows those with a mental illness to work, to engage with the public and to take ownership of their disease. However, it does not work effectively to educate the public about mental illness or reduce the stigma about those with the diseases. The lack of focus in reducing public stigma derives from the NAMI definition of recovery, from the requirement of an invitation to speak, which limits the scope of the message and from the fact that the only people to speak at these events are those in the stigmatized group.
Lecture from the Out-Group Member
Rosenhan writes “Psychiatric diagnoses carry with them personal, legal and social stigmas”(6). Corrigan states that stigma on the mentally ill leads to difficulty for the stigmatized in securing employment and housing (7). The social and legal aspects of the stigma are the result of intergroup bias. Per the intergroup theory, intergroup bias refers to the tendency to view one’s own group, the “in-group”, more favorably than the other, “out-group” and its members (8). Chester Insko found in an experimental study that there is trust extended to in-group members, but not to out-group members (9). This lack of trust can have a negative impact on out-group members in their day to day lives, but also in their IOOV lecture, degrading their message.
The cornerstone of the IOOV lecture series is that the presentation is given by two people with mental health issues. These lecturers are trained by the NAMI organization to talk about their disorders and that disorder’s ramification on their lives. Though this is empowering for those that give the speech, the power of the message is weakened by this structure. Those hearing the lecture are members of organizations that invite IOOV to speak, most often schools and work-places. Therefore, those receiving the message are not members of the mental health community, and so, would classify the lecturers as part of the “out-group”, according the intergroup theory.
According to Marilynn Brewer, it is not always the case that in-group favoritism and out-group negativity are reciprocally related (10). It can be the case that the in-group views themselves more highly than those unlike them, but shows the out-group only indifference (10). If the IOOV lecture was able to avoid that hostility, then the program could work. However, when out-groups do not share the same social norms, indifference is replaced by fear, disgust and contempt (10, 11). Various studies have found that those with mental illnesses are believed to be dangerous, violent, fear provoking and unpredictable by the general public (7, 12, 13). These behaviors are not the social norms held by the general population, therefore the mentally ill are considered a hostile “out-group”.
Since the mentally ill are viewed as a hostile out-group, there is a serious deficiency in the IOOV structure, since its only two speakers are members of the mentally ill out-group. The in-group views them as untrustworthy (10), so their message is not readily believed. Additionally, the out-group does not easily engender empathy in members of the in-group (10), so even the most touching and powerful stories in the IOOV lecture series lacks persuasive force.
Recovery as an Issue of Perception
The NAMI website states that: “mental illnesses are serious medical illnesses. They cannot be overcome through ‘will power’ and are not related to a person's ‘character’ or intelligence”(5). The IOOV educational series however, has a different message with regards to recovery stating:
[R]ecovery is not a singular event, but a multi-dimensional, multi-linear journey characterized more by the mindset of the one taking it than by his or her condition at any given moment along the way. Understanding recovery as having several dimensions makes its uneven course easier to accept… Recovery is the point in someone's illness in which the illness is no longer the first and foremost part of his or her life, no longer the essence of all his or her existence. Ultimately, recovery is about attitude and making the effort (5).
This angle again focuses on speaker empowerment at the expense of the power of its message to those who are being spoken to. The IOOV lecture furthers the stereotype that those with mental illness have a lack of willpower and desire to be well.
The medical community at large has generally embraced a holistic approach to the treatment of those with mental illness. The best known is the assertive community treatment (ACT) model, in which intervention teams take a holistic approach to providing services, helping with medications, housing, finances and everyday problems in living (14, 15). Another holistic approach is the more medically centered Intensive Case Management model (ICM) (16). Both the ACT and ICM methods have shown a decrease in symptoms among those treated and an increase in quality of life compared with their baseline treatment method (17). The Illness Management and Recovery model is a structured program that helps those with severe mental illness learn effective ways to manage illness and pursue recovery goals (16). It would be more in line with these views in the medical community and with the greater NAMI organization if the message within the IOOV lecture portrayed mental illness as a medical issue with a complex and varied treatment plan required to achieve recovery, as opposed to the mind over matter approach it utilizes.
Even if recovery could be achieved with a change in the attitude towards the diagnosis in the eyes of the affected, the ability to achieve recovery and shed the title of mentally ill is not held by the population at large. Research published in 1979 by Rosenhan showed experimentally that for 8 healthy volunteers, once labeled with a mental health diagnosis, it was impossible to be re-labeled as “sane”. In his experiment, the volunteers were admitted into a mental health hospital with the diagnosis of schizophrenia. Their hospitalization lasted anywhere from 7 to 52 days, with an average length of stay of 19 days. All were discharged with the diagnosis of schizophrenia in remission. None of these patients showed any symptoms of schizophrenia in the clinical setting, yet they could not be “cured” from the illness (6). Given the social stigma of mental illness, this can be a significantly limiting label and one that is lasting. Thus, even if no longer symptomatic, the negative effects of the mental illness label brand the person as mentally ill and they are unable to move beyond the label and have it fade into the background of their lives.
Limited Scope of the Message
IOOV purports that the power of their format is that the audience benefits from the personal stories of mental illness and recovery, since they learn, first hand, what it means to have a serious mental illness and how the recovery process works (5). This view is supported by the literature. According to Solomon Asch’s Normative Social Influence theory, people will generally conform to the beliefs of the majority in order to seem like them (18). Though the majority of the research on this theory was done in the 1950s and 60s, experimental tests on a variety of topics done recently show that people continue to conform. A study performed in 2008 on reasons that Californians conserve natural resources found that descriptive normative beliefs were more predictive of behavior than were other relevant beliefs and that that normative social influence produced the greatest change in behavior compared to information highlighting other reasons to conserve (19). This shows that normative messages can be a powerful lever of persuasion.
Unfortunately, the scope of IOOV is too limited to have a profound effect on the generally held beliefs about the mentally ill. From 1996 to 2007, about 200,000 people heard an IOOV lecture. This is only two-thirds of the population of the city of Boston (20) and much less than one percent of the American public. Such negative characteristics as untrustworthiness, aggressiveness and disturbance inducing still persist about those with mental illness (21). In order to use normative social influence theory to its fullest extent, and thus reduce or abolish these negative stereotypes, a more aggressive approach must be used, targeting the general public.
The Stop Mental Health Bullying Campaign
The goal of IOOV is to provide education to the public about mental illness by involving those with mental illnesses. The campaign successfully reduces self stigma in those who suffer from mental health issues by providing them training to be an IOOV lecturer, a job and a purpose. However, IOOV is not effective in the first part of its goal; increasing the public’s knowledge about mental health issues due to the shortcomings mentioned above. I propose a new campaign aimed at reducing the public stigma on those with mental health issues, placing focus on the public’s need to reduce their stigmatizing beliefs. This intervention will be broadly based, so as to be seen by as many people as possible. It will utilize both the mentally ill and the mentally sound, so that there can be messages that are personal yet avoid the “out-group” being the only bearer of the message. Finally, this message will spotlight the difficultly of recovery, the importance of treatment and the integration of the illness into society as something to live with, not hide from.
The first part of the campaign will take advantage of the current awareness of bullying in schools. I propose a radio and television media campaign featuring a school yard scene. Children will be heard taunting another child with phrases like “four-eyes” or “metal mouth” an adult will intervene and scold the child. That scene will end and an adult will say “You don’t let your children call others names, why do you do it those with mental illness?” Then there will be another scene, this time with two adults talking about the behavior or treatment of a colleague. The adult scenes will revolve around talking about erratic behavior, the need for antidepressant or antipsychotic medications or the use of mental health services. The commercials will end with a mental health patient briefly mentioning their illness, their job and their social standing. This will be to encourage the perception that the mentally ill are not an “out-group”, but the “in-group”.
In order to provide an in-depth message about mental illness, there will also be a website that is linked to the commercials. The site will feature personal stories about the damage that stigmatizing beliefs have caused the sufferer. These video testimonials can be linked into popular social media like YouTube and Facebook to maximize views. The site will also include medical professionals to give credence to the information provided by the mental health patient. They will: substantiate their claims that there are organic causes for mental issues, ensure that the mentally ill can be functioning members of society and show evidence that various treatment scan be effective. By using several speakers and several avenues to reach the target audience, I hope the campaign is wide-spread and effective.
Use a Broad Advertisement Base
To achieve the goal of a positive change in public perception of mental illness, the campaign should utilize a broad advertising base, so that as many people as possible are exposed to the message. This can be done by launching the advertisement campaign nationally and framing it in a way that encourages those who see or hear the radio and television messages to go on the internet and view a more in-depth campaign. The message there can contain additional content, videos from mental health professionals talking about the biologic causes of mental illness, mental health patients talking about their disease and its ramifications, common misconceptions about the mentally ill and links to additional resources. The messages on television and on radio should vary, as research shows that varying the message in advertising regarding a product or service can be an effective technique in integrated marketing communications (22). The content of the negative gossip regarding the mentally ill can vary among advertisements, as can the mental health spokesperson at the end of each segment to utilize this theory.
A Multi-Spokesperson Approach
The spokesperson at the end of each advertisement and on the web videos will be a person who has a mental illness or a medical professional in the mental health field. This will take advantage of two theories in order to improve the intervention. The first, the informational social influence theory, states that when a group of individuals give their judgments in the presence of others, the group establishes a range of norms. Those norms persist in the individual once they have been established (23). The second theory, relates to Snyder and Hamilton ideas on the “role model” message. The role model message is delivered by a member of the target audience who has already changed his or her behavior with regards to the target action. This could be done by the family members of people with mental health issues, who have come to realize that the mentally ill should be treated as anyone else with an illness would be. As more and more individuals in society begin to change their thoughts regarding the social and medical treatment of the mentally ill, the national perception can be changed.
Spotlighting Various Treatment Avenues
The Stop Mental Health Bullying campaign will spotlight the various mental health issues and the myriad ways to treat them. There will be advertisements highlighting the many different mental disorders: depression, post-traumatic stress disorder, schizophrenia and bi-polar disorder, for example. Each of these illnesses have different standard treatment regimens, and this will be emphasized. The aspect that IOOV emphasizes, that people can aid their recovery through effort and attitude will be deemphasized in this intervention. This is because there is already a stigma that those with mental illnesses are lazy, indolent and unwilling to recover (24-26). In pointing the theory that the mentally ill can be in control of their own recovery through mental effort, they are furthering this stigma and hurting the group they want to aid.
A study by Farina et. al. exposed groups of students to two different messages regarding mental health patients. One group was shown a message describing mental illness as a disease and the other as a product of social learning. Results showed that those receiving the disease message thought that a victim of mental illness could do less to help himself and herself than did those receiving the social learning message (27). By extension, this provides evidence that change is possible with regards to the current public belief that those with mental illness are lazy and unmotivated. This will hopefully open the door to larger social change, such as more willingly employing those with mental illness and not passing them up because of perceived laziness.
The stigma of mental illness has effects that alter the fabric of the life of the individual suffering the illness. The effects of stigma have been shown to decrease treatment compliance, help-seeking behaviors and self esteem while increasing joblessness, homelessness and the average length of prison sentences (28). Reducing this stigma and the behaviors of the general population that cause it will be an effective way of changing some of the effects of stigma so commonly seen in the mentally ill.
Though the IOOV lecture series is effective in reducing the self-stigma that the mentally ill have for themselves, the program is less effective in reducing the stigma the general population has for them. My intervention is aimed at this general population, targeting them through the informational social influence theory, the principals of the “role model” model, and integrated marketing communications. By utilizing a mixture of theories and models both on the cutting edge of research science and those tried and true methods, I anticipate a modestly successful campaign.
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