COMMENTARY

Psychiatry's Stigma in Minority Communities: A Social Media Solution

Wilsa M.S. Charles Malveaux, MD, MA; Tiffani L. Bell, MD; Chuan-Mei Lee, MD, MA; Racquel E. Reid, MD

Disclosures

February 24, 2017

The Importance of Social Media in Psychiatric Care

In the wake of our recent presidential election, it is now more evident than ever how social media has worked its way to the core of Americans' daily functioning. Whether as a news source or an outlet for pontification and emotion, social media has become an influential factor in our lives. It is so powerful that it can act as a conduit for psychological trauma after national tragedies, outside of the communities in which they occurred, as was shown in documented increases of prolonged acute stress disorder after the 2013 Boston Marathon bombing.[1]

The stigma of psychiatry and mental illness is undeniable, although some still fail to realize how this affects our patients, their seeking of care, and our ability to truly help them.

Social media—specifically, Internet-based applications focused on user-generated, shared content—has revolutionized the way that people discuss mental illness. However, little research has been done on the ways in which individuals with mental illness use social media, and how psychiatrists can incorporate these technologies in the education and treatment of their patients.

It is similarly critical to evaluate our abilities to empathize with those who may have different experiences from our own, and address the barriers to appropriate healthcare for underserved populations. The stigma of psychiatry and mental illness is undeniable, although some still fail to realize how this affects our patients, their seeking of care, and our ability to truly help them.

This stigma is magnified in ethnic minority communities. Although the reasons behind stigma may vary, there is relatively greater pressure from within these communities not to seek psychiatric care. Certain minority groups are already at increased risk for mental health disorders owing to acculturative stress and trauma. However, stigma surrounding psychiatric care has been perpetuated by family members, friends, and other individuals in the community, with whom patients more easily come into contact via social media.[2]

Methods

With a special focus on the ethnic minorities represented by our research team, we conducted a literature review of Internet-based media and other social media outlets to explore the intersection of stigma, psychiatry, and social media in Caribbean Americans, African Americans, and Asian Americans. Here, we share an overview of our findings regarding the stigma of psychiatry within these ethnic minority populations, and our recommendations for how physicians can use social media to better understand and reach those whom we strive to help.

Caribbean Americans and Psychiatric Care

As a first-generation, US-born, black Caribbean American who grew up in a family still very involved with the Caribbean community, it was not terribly shocking to learn that one half of black immigrants to America are from the Caribbean. According to 2013 US Census data, immigrants from Jamaica make up the largest percentage of this group (18%).[3]

Although indeed not all persons from the Caribbean are black, it is important to recognize that we cannot tell the ethnic origin or experience of a new patient simply by looking at them, knowing their primary language, or the presence or absence of an accent. Multiple languages are spoken in many of the Caribbean countries and US territories, although several are largely, if not primarily, Spanish-speaking; these include Cuba, the Dominican Republic, and Puerto Rico.

As of 2008, the highest percentage of foreign-born military personnel were from Latin America and the Caribbean (38.7%),[4] making the cultural concerns of Caribbean peoples greatly relevant to clinicians working with veterans.

Beliefs, Experiences, and Stigmas

Research has consistently found that most adults with a mental disorder do not receive treatment.[5] In a study of Americans with severe symptoms of depression, only 22% of Caribbean black persons received treatment.[6]

Stigma is a major contributor to this lack of presentation for treatment. Despite the significant portion of Americans who are of Caribbean origin or descent, there is sadly no scientific literature exploring their views toward mental health. My exploration of Internet-based media, however, was very telling.

 
Within the Caribbean community, such issues as suicide have been regarded by some as a "get out of jail" card; depression as an affliction of the wealthy...and mental illness overall as a problem of demonic possession rather than a medically treatable illness.
 

Within the Caribbean community, such issues as suicide have been regarded by some as a "get out of jail" card; depression as an affliction of the wealthy[7]; schizophrenia as "the worst diagnosis," with sufferers being "very dangerous to society" and having "no control"[8]; and mental illness overall as a problem of demonic possession rather than a medically treatable illness.[9]

Such beliefs affect our ability to treat illness by determining whether members of these groups seek help. A 2013 study comparing African Caribbean, African American, and black women of mixed background found that presence of mental health problems (eg, posttraumatic stress disorder, depression) was not significantly associated with seeking mental health resources.[10]

A study using data from the National Survey of American Life compared the use of psychiatric services between African American and both US-born and immigrant Caribbean black individuals, and also included intragroup comparisons based on which region of the Caribbean the immigrants were from.[11] One of this study's striking revelations was that persons from Spanish-speaking countries were significantly more likely to report mental health service use than were Haitians or those from English-speaking Caribbean countries. Although not suggested by the authors, one interesting explanation may be the increased acculturative stress that those who are primarily or exclusively Spanish-speaking may experience in the United States.

The study also found that black persons born in the United States, those who arrived to the country at age 12 or younger, and Caribbean black persons who were third-generation or later were more likely to report use of mental health services. These findings demonstrate the importance of considering a multitude of factors beyond ethnicity alone, which is often as far as physicians go when encountering a new patient.

Another study using data from the same survey found that Caribbean black individuals were less likely than African Americans to use non-health services or to seek help from a psychiatrist. Of note, Caribbean black persons were more likely to seek help from a nonpsychiatrist mental health provider for mental illness.[12]

One study found that US-born Caribbean black fathers used mental health services more than foreign-born Caribbean black persons and African Americans.[13] We see here again how country of birth and generational status had a significant effect on a patient's tendency to seek treatment, which may be evidence that stigmatizing beliefs decrease with acculturation.

Although a certain taboo surrounds psychiatry in various cultures, the particulars of stigma requires a nuanced understanding of this population. One 2007 study comparing immigrant black and Latina women with US-born white women illustrates that point.[14] Researchers found that among those diagnosed with depression, black and Latina immigrants were more likely than US-born white women to report stigma-related concerns, and these women were less likely to indicate an interest in mental health treatment. Furthermore, stigma decreased the desire to seek help for the immigrant ethnic minority groups, but not for the US-born individuals (regardless of whether they were white or of an ethnic minority group).

African Americans and Mental Health: A Betrayal of Trust

My colleague, Dr Racquel Reid, assistant professor at the University of Texas Health Science Center at San Antonio, not only conducted a thorough literature review on how black Americans view mental health, but also took an intriguing look at Twitter and Tumblr to see how those views were represented in social media. Dr Reid found countless tales of women refusing to return to their psychiatrist, psychologist, or therapist. In many ways, mental illness is seen as "a white man's problem" in this community. Research studies have revealed that black geriatric women view antidepressants as not being "acceptable," and that mental health treatment is not the most "appropriate" way to symptom reduction.[15,16]

Tuskegee's Destructive Legacy

We know that African Americans use mental health resources at much lower rates than the general population. Many African Americans find themselves fighting a perception in the community that mental illnesses are "made up."[17]

Given this nefarious violation of human rights in US biomedical research history and the exploitation of the African American community, it is no wonder that a deep-seated mistrust of doctors and medical research has followed.

In addition, Dr Reid points out that for many African Americans, thoughts of the Tuskegee experiments come to mind when considering trust of institutions. These infamous experiments conducted by the US Public Health Service from 1932 to 1972 aimed to examine the natural progression of untreated syphilis.

Poor, African American sharecroppers living in Alabama were targeted for enrollment with the promise of free medical care, meals, transportation, burial assistance, and stipends to their survivors in the event of their death. The men were told they would be treated for "bad blood"; however, when the study's funding was lost, it was continued without informing the men that they would never receive treatment. In 1947, when penicillin became the standard treatment for syphilis, it was withheld from all of those enrolled in the study, including the control group. Dozens of the participants died, along with countless others, including their wives and children, who were infected with the disease. None of the infected men were ever told they had syphilis.[18]

Given this nefarious violation of human rights in US biomedical research history and the exploitation of the African American community, it is no wonder that a deep-seated mistrust of doctors and medical research has followed. Dr Reid notes that this mistrust has manifested itself in lower rates of enrollment of black people in studies, and fears that they or their children will be placed on medication, will be "experimented on," or will expose information to practitioners that can be used against them.[16,19]

Differential Mental Health Treatment and Obstacles to Treatment

This already complex relationship is further stressed by discrimination and disparities in mental health treatment. It is documented that only a small percentage of African Americans get adequate treatment, and when treated, they receive more invasive and potentially harmful care. African Americans are also more likely to be involuntarily committed, placed in seclusion or restraints, and given higher doses of medications. These discriminatory practices also extend to African American children, who are more likely to be treated in the juvenile justice system.[20]

Numerous studies have demonstrated how pain experienced by black people is minimized and underestimated in various medical settings, such as postoperatively and in emergency department visits. A 2012 study confirmed that black people are perceived as "stronger" and "impervious to pain."[21]

What these historical events, documented biases, and underlying stigmatizing beliefs tell us is that the examination of the use of mental health services cannot be separated from the impact of racism. As Dr Reid aptly points out, much of the perceptions about mental health among African Americans are related to racism and structural inequalities. Not surprisingly, many African Americans who use mental health services discuss frequent negative interactions from providers who do not have a nuanced understanding of US race relations, which again leads to avoidance of mental health treatment. For these reasons, it is necessary to have mental health providers who are diverse and culturally sensitive.

Spirituality also influences the African American community's mental health perceptions and use of resources. The great majority (85%) of African Americans identify as being either fairly or greatly religious, and many rely exclusively on spiritual support in lieu of professional treatment. When they do seek treatment, African Americans have a tendency to view treatment by mental health providers as secondary to treatment offered by religious organizations.[17,20] This tendency to seek alternatives to traditional mental health treatment may be a byproduct of multiple factors in the community, including not only stigma but also cost, mistrust, and a philosophy of self-reliance.[22]

What Social Media Tells Us

Twitter and Tumblr have emerged as platforms for people to discuss, along with so much else, their mental illness. One 2012 study found that Twitter users who attempted suicide had evidence of suicidal ideation in their tweets before their suicide attempt.[23]

Whereas many case reviews have explored the perceptions of mental health providers regarding social media and several peer-reviewed studies have examined cultural psychiatry, there is a dearth of literature on mental health and social media. What does exist, as Dr Reid saw in her perusal of Twitter and Tumblr, are numerous examples of how everyday people talk about their mental illness; perceptions of others, including celebrities, who are rumored to have diagnoses; and commentary on popular TV shows that depict those using psychiatric treatment. When entertainment stars berate others for being depressed or even making suicide attempts, the public takes notice.

In these forums, people make light of the aversion to getting psychiatric care in the African American community, as if this aversion is both a well-kept "secret" within the community while simultaneously being something all African Americans may be able to relate to. It is clear that social media is an important means for psychiatrists to gain insight into the views of the community and increase education efforts regarding mental health, and thus enhance treatment adherence.

Asian Americans: Both Home Alone, and Lost in Translation

Another of my esteemed colleagues, Dr Chuan-Mei Lee, a child and adolescent psychiatry fellow at the University of California, San Francisco, focused her literature and social media review on the Asian American population.

As of 2011, Asian Americans made up 5.8% (18.2 million) of the total US population. These numbers include those of more than one race. The largest Asian American groups included Chinese (4.0 million, excluding those of Taiwanese descent), Filipinos (3.4 million), Asian Indian persons (3.2 million), Vietnamese (1.7 million), Koreans (1.7 million), and Japanese (1.3 million). At the time of the population survey, Asian persons had passed Hispanic persons as the largest group of new immigrants to the United States, with 46.0% growth between the 2000 and 2010 censuses—more than any other major race group.[24]

With Asian Americans making up a significant portion of the US population— and certainly more if you live or practice in California (6 million in 2011) or New York (1.7 million in 2011)—an understanding of the cultural issues pertaining to this group are relevant to being able to deliver informed psychiatric care.

One surprising finding from Dr Lee's research was that compared with other races and ethnic groups in the United States, Asian Americans were the least likely to utilize mental health services, including prescription medications and both outpatient and inpatient services. In addition, compared with these other groups, Asian Americans who did not utilize services were more likely to give such reasons as they did not think that services would help or that they needed treatment, or there were barriers (eg, language) to getting the help they need.[25]

When the differences in mental health services use with respect to birthplace were explored, the research revealed similar patterns to what we saw in the Caribbean American population. Specifically, US-born Asian Americans were more likely than foreign-born Asian Americans to seek help for mental health problems, and when they did, many sought traditional Asian treatments (eg, herbal medicines) before looking to Western medical treatments.[26]

At least in part, the answer to why use of mental health services is low is once again stigma. Dr Lee's exploration of the literature on what specific stigmatizing beliefs Asian Americans, and other Asian persons, hold regarding mental health showed some common themes across studies. These included beliefs that mental illness impairs family reputation, is a sign of poor moral character and/or emotional weakness, results in loss of "face," and is caused by bad "karma" or punishment from God.[27]

Asian Immigrants and Social Media

As with the other groups explored, there were few studies on how Asian Americans use social media. Asian American male college students have been shown to use online support groups. Although they feel a sense of comfort and connection to other group members, they also preferred to use aliases, which may suggest concerns about stigma even among those who share the same issues.[28,29]

Other studies that Dr Lee reviewed exploring the use of social media by Asian immigrants demonstrated both its positive and negative effects. Social media helps them to connect with friends and family in their countries of origin, allows a more comfortable process of cultural adaptation, and provides a platform for advocacy and outreach, but it can simultaneously be a source of stress, rumors, or bullying; promote stereotypes; and be excessively time-consuming.[30]

From a provider standpoint, however, social media platforms such as Twitter have already been shown to be useful tools for challenging mental health stigma. Twitter has been used to provide psychoeducation and replace the stereotypes with facts and figures.

From a provider standpoint, however, social media platforms such as Twitter have already been shown to be useful tools for challenging mental health stigma. Twitter has been used to provide psychoeducation and replace the stereotypes with facts and figures. By creating a space where members of different groups can interact, this counteracts the stereotypes that can flourish when differing groups exist in isolation. In addition, protests that occur or are publicized by social media aid in highlighting injustice and admonishing stigmatizing attitudes.[31]

A New Normal: Reversing the Marginalization of Minority Issues

As our research group prepared for the international talks we have given on this subject over the past 2 years, we discussed including various other groups. The United States is so wonderfully diverse that it would be impossible to include every ethnic group, and as such, we kept the focus on the groups of our origins. It would certainly make good fodder for exploration for others inclined to do the research into their groups of interest.

With respect to white Americans, it is not necessarily intuitive that an exploration of how these groups would differ is needed. On one occasion, while I was giving this lecture to a group of residents, a white male resident asked, "But did you look at how this is any different from white people?" and proceeded to assert that he did not see how this research was necessary, because some white persons also have a stigma against psychiatry. This encounter turned out to be a "head fake," as the lecturer and professor Randy Pausch would put it. Although the resident's intent may have been to demean the research, it actually highlights the very reason why this type of work is important. It is not intuitive to everyone (not even to all psychiatrists) that there are differences in how people see and experience the world according to their ethnic origins.

Here in Los Angeles, it is common for you to be in conversation with a white person who will casually mention their "therapist" or even what medication their mother is on, but this is not the case in the communities of color we explored. Studies showing how feelings of stigma and mistrust keep these individuals of color away from seeking treatment entirely are but one example of distinct differences from the white American population.

Perhaps a more important question for that resident and others to consider is: Why do the findings need to be compared with the white population to be relevant? Learning about other cultures different from our own is part of being able as physicians to deliver appropriate care to all of our patients, particularly where mental health is concerned, and should not be seen as optional subspecialty training.

Revelations From Our Work

Our research group's investigation highlighted the glaring paucity of scientific data on social media use in the United States, and also the lack of studies on stigma of psychiatry in different ethnic groups in the United States. There were, however, some interesting revelations.

Stigmatizing beliefs are certainly present for ethnic minorities with regard to seeking mental health services and having a mental illness. Although anecdotal sources provide examples of these beliefs, the current scientific data expose the presence of stigma, but most do not provide information on what the actual stigmatizing beliefs are.

Cursory examinations of media outlets have shown that the negative attitudes held by minorities about mental health services and diagnoses are evident, but these studies were done almost exclusively in the United Kingdom and other countries. No formal research studies have been done on these attitudes as they are portrayed in social media in the United States. This is indeed surprising, given the popularity of social media in the United States. America, we've got some catching up to do!

Practical Considerations for Psychiatrists

Unique characteristics are at play within the aforementioned communities, in terms of mental illness and the ways in which social media may contribute. So what can psychiatrists do with this information?

Dr Tiffani Bell, a psychiatric hospitalist and research fellow in Winston-Salem, North Carolina, reviewed the literature to see whether any scientifically based approaches have been offered. As with the previous literature reviews discussed, most studies examining the topic were from other countries besides the United States. What's more, when the literature does address mental health and stigma, social media and its influence are generally not mentioned.

Dr Bell found that the research shows us that antistigma initiatives generally take three approaches:

  • Education to challenge inaccurate stereotypes;

  • Interpersonal contact with a person with a mental illness; and

  • Social activism or protest.[32]

Apart from the general approaches documented to combat the stigma of mental illness, psychiatrists and other mental healthcare providers are uniquely positioned to address this issue. There are several points to consider in this undertaking.

First, it is vital to increase awareness of the differing communication styles that our patients use to convey their distress and concerns, because these may be potential barriers to treatment. Second, cultural sensitivity is imperative to understand the barriers that interfere with delivery of care to minority groups. Third, understanding cultural differences can help us understand what may be contributing to the stigma surrounding psychiatry. Fourth, we have a responsibility to be aware of the messages that are being conveyed by social and mass media regarding psychiatry.

Finally, we must be aware that our patients may have a completely different online persona from the one they present in our office. This last point I find particularly relevant in the realm of sports psychiatry, which is a passion of mine.

[W]e must be aware that our patients may have a completely different online persona from the one they present in our office.

You may be familiar with the story of Madison Holleran, the University of Pennsylvania track star athlete who committed suicide in January 2014. Madison posted happy photos on Instagram, but was secretly suffering. When her family noticed that things were off, she assured them of her plans to see a therapist. Instead, she took a running leap from the top of a nine-story parking garage to her death. This heartbreaking tale is a prime example of how a person's social media presence may look completely different from their actual experienced life.[33]

Whether our patient is a high-profile individual or not, the fact is that many people feel the need to portray themselves differently than how they feel when in public, or even when in our office.

With an understanding of social media and its potential impact on our patient populations, Dr Bell proposes several steps that psychiatrists can take. For starters, psychiatrists can develop an online professional persona, separate from their personal social media use, to disseminate accurate and appropriate information about psychiatric diagnoses and treatment. In addition, psychiatrists can create their own antistigma plans and utilize other platforms, such as fact sheets, to dispel stigmatizing beliefs.

Psychiatrists can volunteer to write articles for other established websites, magazines, or blogs to provide evidence-based information on mental illness. They can also poll their own patient populations to get an idea of the ways in which they interface with social media, particularly assessing whether and how they use it as an outlet for their emotions. Developing antistigma workgroups in your home institutions regarding ways to address stigma in specific patient populations can also be helpful.

Finally, our team's work has well demonstrated that there is a great need for more organized research to explore the interplay between social media and mental health.

Concluding Thoughts

There are no absolutes. What unifies us as human beings is knowing that we all can find something in common with another person, even if they have a completely different history from our own. Reading this, you may even find similarities with those from one of the groups we explored, even if that is not your origin. Alternatively, you may be from one of the groups we explored and found that your experience with respect to thinking about mental illness is completely different.

The point is, we cannot and should not make assumptions. No one can know everything about every ethnic group. Likewise, we should not assume that simply being a member of a certain ethnic group conveys total understanding of the needs and sensitivities of that group.

Still, we cannot downplay the importance of diversity among providers, and the empowerment and trust that comes when patients are able to see a reflection of themselves in those who care for them. With the shortage of minority physicians, this is a comfort not afforded to many minorities in this country. This makes it even more important for psychiatrists in particular, and physicians in general, to educate ourselves on the factors that may prevent us from reaching those we aim to serve.

Our ethnic differences, and what that means in terms of living in our own skins in America, are significant and too often overlooked. As we begin to step out of our own comfort zones and examine these divergences, we become better, more competent physicians.

Acknowledgments: Dr Wilsa Charles Malveaux authored this article, integrating contributions from the coauthors, who all were esteemed fellows in the American Psychiatric Association's SAMHSA Minority Fellowship Program. Each coauthor contributed research based on their ethnic background. Dr Tiffani Bell contributed the research and insights on the practical ways in which psychiatrists can use social media. Several physician colleagues and other mentors reviewed this work in progress both before and during the writing of this paper, including Donna Ames, MD; Brigitte Bailey, MD; Ms. Tatiana Claridad; Mr. Bernard Lee, MPH; Christina Mangurian, MD; Carol Mathews, MD; Mrs. Marilyn King; and Praveen Srinivasan, PhD; and several anonymous reviewers.

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