Behavioral & Psychological EM Disrupting the Cycle of Self-Stigma for Patients

Disrupting the Cycle of Self-Stigma for Patients

By Radhika Shah and Michael A. Gisondi, MD

Stigma is defined as a mark of disgrace associated with a particular attribute or condition. Stigmas are insidious and pervasive in society — they are negative determinants of health affecting many patients who seek care in our emergency departments. Public stigmas are social stereotypes based on a defining characteristic that often result in discrimination. They significantly impact how patients feel about themselves and their health. Self-stigma is the internalization of public stigmas, resulting in emotional responses such as shame, guilt, or denial of a health condition. Self-stigma makes it difficult for patients to fulfill social expectations in their lives, decreases self-esteem, lowers self-worth, and can promote behaviors that are detrimental to health. These consequences lead to a lack of public empathy and understanding of those stigmatized.

Self-stigma is most commonly experienced by patients suffering from mental illness, and numerous studies have demonstrated the prevalence of self-stigma in this population. Patients with mental health conditions remain

“Self-stigma makes it difficult for patients to fulfill social expectations in their lives, decreases self-esteem, lowers self-worth, and can promote behaviors that are detrimental to health.”

Figure 1

“Self-stigma is the negativity and internalized shame that patients have about their health condition; it largely results from public stigma and manifests differently in patients based on circumstances and settings.”

heavily stigmatized in society, and they are susceptible to self-stigma that can result in extreme behavioral and emotional responses. In a meta-analysis, Livingston and Boyd determined that 36% of patients with serious mental illness experienced self-stigma that can significantly threaten their well-being. For instance, self-stigma negatively impacts health maintenance behaviors such as seeking routine medical care or being medication compliant. These behaviors increase symptom burden, worsen conditions, and exacerbate the selfstigma that patients experience.

The association between public stigma, self-stigma, and negative health consequences is evident. We propose a conceptual framework that demonstrates a cyclical nature of stigma: self-stigma causes negative health consequences, these consequences exacerbate societal lack of understanding of some patients, lack of understanding promotes stereotypes and public stigmas, and belief in societal stereotypes augments self-stigma. (Figure 1) Though other “cycles” of stigma have been described in the literature, we believe our cause-andeffect model to be unique. We will briefly address each element in our conceptual framework and then summarize several practical interventions for emergency providers to use to disrupt this cycle of stigma.

A Cycle of Stigma

The effects of self-stigma represent significant risks to patient welfare. Selfstigma is the negativity and internalized shame that patients have about their health condition; it largely results from public stigma and manifests differently in patients based on circumstances and settings. Self-stigma is common and measurable. The Internalized Stigma Mental Illness Inventory-29 assesses markers of self-stigma across several domains including isolation, stereotype endorsement, discrimination experience, stigma resistance, and social withdrawal. This tool is useful for providers when discussing stigma and screening patients for referral to outpatient providers. Though self-stigma is often associated with mental health issues, it can present with many other social and health conditions. For instance, two groups who commonly experience self-stigma include those who are food insecure and patients with substance use disorders; for these individuals, self-stigma can lead to low utilization of food stamps or failure to seek addiction treatment.

“Since a reduction in self-esteem is one of the main consequences of self-stigma, interventions that specifically address selfesteem maintenance or renewal are key.”

BEHAVIORAL & PSYCHOLOGICAL EM

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Self-stigma clearly causes negative health consequences. Patients with selfstigma may feel embarrassed about their conditions, leading to harmful actions (or inactions) that might worsen their health. For example, after examining data from over 300 patients who suffer from a variety of mental disorders including schizophrenia, depression, and anxiety, researchers found a significant negative correlation between self-stigma and the continuation of mental health services; specifically, individuals with higher levels of self-stigma were more likely to stop taking their medications. Further, this study found a positive correlation between self-stigma and medication compliance. Therefore, patients who experience a regression in their condition or struggle with chronic treatment regimens should be screened for selfstigma as a potential etiology.

Mental illness is heavily stigmatized in society, and a lack of understanding regarding mental health conditions can manifest in a variety of hurtful stereotypes that perpetuate public stigma. Society stigmatizes patients who purposely neglect their health or appear to irresponsibly exacerbate their conditions. Unfortunately, the negative health consequences caused by selfstigma may be misattributed to poor self-control or inadequate self-sufficiency. This lack of understanding leads to a lack of empathy, indifference, and stereotyping. Furthermore, disorders such as depression, schizophrenia, and bipolar disorder can result in a variety of circumstances that society further stigmatizes, such as the inability to maintain a job or engage in fulfilling relationships.

Taken together, there is an apparent cycle of stigma that is dangerous, particularly for patients with mental illness. Public stigma towards mental illness leads to internalized stigma for those affected. This self-stigma leads to negative health repercussions such as failure to take medications. The behavior of patients who are not being adequately treated perpetuates a further lack of understanding in society. Society then responds by taking actions that exacerbate the problem, such as stereotyping and providing inadequate treatment for mental illness. Discrimination, lack of community support, and public stigma become easily internalized by those with mental illness who have low self-esteem, resulting in damaging self-stigma. It is a vicious cycle that rapidly repeats.

Interventions

Stigma is a complex problem without a quick solution. That said, emergency providers can initiate interventions and help patients access appropriate outpatient care. Simply creating space and taking the time to understand why a patient experienced adverse health consequences can have an impact. The initial steps are to listen to patients, discern the trajectories of their conditions, explore if they are experiencing selfstigma and its effects, and assess their insights about the role of self-stigma in their lives. The goal of any treatment regimen is to change the stigmatizing beliefs of the patient and develop coping skills for those affected by self-stigma. This includes caregivers as well as patients. Resources exist to combat this problem for both groups, and treatment plans take time and persistence to execute effectively.

Referrals to outpatient providers are generally warranted. Therapists can help improve communication between patients and family members by teaching listening skills and thoughtful responses to alleviate anxiety. Self-stigma debunking and other treatment goals can be achieved through cognitive behavioral therapy, selfaffirmations, and peer support groups. Since a reduction in self-esteem is one of the main consequences of self-stigma, interventions that specifically address self-esteem maintenance or renewal are key. For example, emergency providers can encourage patients to download apps such as I Am that provide free, daily positive affirmations to users. The National Alliance on Mental Health has resources for programming and stigma-reduction activities that can benefit patients who are struggling. Structured, intensive outpatient programs are available as well. For example, the Ontario Central Local Health Integration Network developed a two-week, inperson program called Understanding Stigma to increase patient awareness of self-stigma and teach coping skills. Ending Self-Stigma is another groupbased treatment approach that meets longitudinally and focuses on coping mechanisms through cognitive therapy.

Conclusions

There is a cyclical relationship between self-stigma, its adverse health consequences, a resultant lack of understanding by society, and harmful stereotyping that promotes stigma. Emergency providers should identify patients with self-stigma and refer them to appropriate outpatient resources. Treatment options are aimed at reducing self-stigma and its effects. Interventions such as those described can interrupt the cycle of stigma, creating a positive feedback loop where individuals increase their self-esteem, treat their conditions, achieve positive goals, and slowly eliminate the effects of self-stigma.

ABOUT THE AUTHORS

Radhika Shah is an undergraduate student at Stanford University.

Michael A. Gisondi, MD is an associate professor and vice chair of education in the department of emergency medicine at Stanford University. He is the principal of The Precision Education and Assessment Research Lab (The PEARL) at Stanford.