research anthology on mental health stigma education and treatment

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Understanding and Addressing Mental Health Stigma Across Cultures for Improving Psychiatric Care: A Narrative Review

Ahmed a ahad.

1 Psychiatry and Behavioral Sciences, Florida International University, Herbert Wertheim College of Medicine, Miami, USA

Marcos Sanchez-Gonzalez

2 Health Services Administration, Lake Erie College of Osteopathic Medicine, Bradenton, USA

Patricia Junquera

Stigma, characterized by negative stereotypes, prejudice, and discrimination, is a significant impediment in psychiatric care, deterring the timely provision of this care and hindering optimal health outcomes. Pervasive in all aspects of psychiatric care, stigma leads to delayed treatment, increased morbidity, and diminished quality of life for those with poor mental health. Hence, better understanding the impact of stigma across different cultural contexts is critically essential, aiming to inform culturally nuanced strategies to minimize its consequences and contribute to a more equitable and effective psychiatric care system. The purpose of the present literature review is twofold (i) to examine the existing research on the stigma surrounding psychiatry across different cultural contexts and (ii) to identify the commonalities and differences in the nature, magnitude, and consequences of this stigma in different cultures in the psychiatry field. In addition, potential strategies for addressing stigma will be proposed. The review covers a range of countries and cultural settings, emphasizing the importance of understanding cultural nuances to combat stigma and promote mental health awareness globally.

Introduction and background

Stigma, characterized by societal prejudice and discrimination, profoundly influences psychiatric care, creating barriers to the timely recognition and treatment of mental health disorders [ 1 ]. Deeply embedded in societal norms, stigma is a multifaceted issue permeating every level of psychiatric care, leading to delayed treatment, increased morbidity, and a diminished quality of life for patients.

The importance of addressing stigma in psychiatry cannot be overstated as stigma impacts individuals seeking care, their families, healthcare professionals, and broader society. At the individual level, stigma can lead to fear and avoidance of mental health services, causing delays in seeking help even when a patient is in dire need. Delays in seeking care can exacerbate mental health conditions leading to worse outcomes and reduced quality of life [ 2 ]. For families, the stigma can lead to shame and isolation, making seeking necessary support and resources more difficult. Interestingly, in healthcare professionals, stigma can lead to burnout and demoralization, reducing the quality and provision of care. Stigmatization can also create barriers between healthcare providers and patients, complicating matters to establishing trustful and therapeutic relationships, which are essential for effective care [ 1 ]. For society at large, stigma can result in the misallocation of resources, with mental health services often being underfunded and overlooked [ 3 ]. Hence stigma has profound effects at personal and societal levels, negatively impacting multiple levels of the psychotic care continuum. 

Addressing the stigma surrounding mental health can significantly enhance the effectiveness of psychiatric care. To this end, developing programs and strategies that foster a culture of understanding and acceptance may encourage more individuals to seek help when they need it, improving early detection and intervention, which are crucial for better health outcomes. Furthermore, challenging and changing stigmatizing attitudes can improve the therapeutic relationship between healthcare providers and patients, leading to more personalized and effective treatment strategies.

Stigma, however, is not a monolithic entity but varies across cultures, influenced by distinct societal norms, values, and beliefs. Understanding these cultural variations is essential for developing effective, culturally sensitive interventions. Therefore, this literature review aims to examine the manifestation and impacts of stigma across different cultural contexts, laying the foundation for tailored strategies to combat this healthcare barrier.

Stigma as a psychological construct

In the literature, there have been several attempts at creating instruments to measure and understand stigma as a psychological construct in the context of mental health. In this vein, the Internalized Stigma of Mental Illness (ISMI) scale and the Perceived Devaluation-Discrimination Scale, among others, seek to quantify stigma more objectively [ 4 , 5 ] . The ISMI scale, as defined by Ritsher et al. (2003), measures the subjective experience of stigma, including the internalization of negative stereotypes and beliefs about mental illness [ 4 ]. It includes five subscales: Alienation, Stereotype Endorsement, Discrimination Experience, Social Withdrawal, and Stigma Resistance. These subscales were further defined as follows: (i) Alienation: The feeling of being less than a full member of society due to one's mental illness, (ii) Stereotype Endorsement: The extent to which the individual agrees with common negative stereotypes about people with mental illness, (iii) Discrimination Experience: Personal experiences of rejection or exclusion due to mental illness, (iv) Social Withdrawal: The extent to which the individual avoids social situations for fear of being stigmatized, and (v) Stigma Resistance: The individual's ability to resist or counteract stigma. The Perceived Devaluation-Discrimination Scale, as described by Link (1987), measures the extent to which individuals believe that most people will devalue or discriminate against someone with a mental illness [ 5 ]. It focuses on the individual's perceptions of societal attitudes, rather than their personal experiences with stigma. Overall, while the ISMI scale can give insights into the internalization and personal experience of stigma, the Perceived Devaluation-Discrimination Scale can provide a view of societal attitudes and perceived discrimination. The above are crucial to understanding the full landscape of stigma in psychiatry across different cultures by helping identify where interventions might be most needed and most effective, whether at the level of societal attitudes, personal beliefs, or both. The pervasive nature of stigma presents a daunting challenge to psychiatry, necessitating a rigorous and nuanced approach to its understanding and mitigation. However, despite recent awareness campaigns, the field still struggles with the barriers that stigma imposes on patient care, necessitating additional analysis of the effects.

Individual and societal impact of stigma

Stigmatization of mental illness across cultures is a significant barrier to psychiatric care. The stigma can lead to delayed diagnosis and treatment-seeking behaviors, reduced quality of life, and an increased risk of social exclusion and discrimination [ 2 ]. Furthermore, mental illness stigma often intersects with other forms of stigma, such as gender, race, and socio-economic status, leading to further marginalization of already vulnerable populations making it challenging to provide equitable, culturally sensitive, and effective psychiatric care to individuals with mental illness. Accumulating research suggests that stigma toward mental illness is common in various cultures, which can affect mental illness diagnosis, treatment, and management [ 6 ]. Furthermore, some studies reveal that mental health stigma manifests differently across cultures and can be influenced by cultural beliefs, attitudes, and values [ 7 ]. The stigma surrounding psychiatry and mental health disorders has numerous detrimental effects on individuals and communities, including:

1. Delayed Treatment-Seeking Behavior

Stigma plays a significant role in delaying treatment-seeking behavior for individuals struggling with mental health issues. The fear of being labeled, ostracized, or misunderstood due to their condition often deters individuals from seeking help promptly. According to a study by Clement et al. (2015), stigma was associated with an increased likelihood of delaying or avoiding seeking help for mental health concerns [ 8 ]. Consequently, symptoms may worsen over time, escalating the condition's severity and making treatment and prospective recovery more challenging. Healthcare delays can also lead to decreased self-esteem and increased depressive symptoms, creating a vicious cycle of self-blame, isolation, and hopelessness. Prolonged untreated mental health issues can further impair an individual's functionality in various life domains, including work, relationships, and self-care, thus reducing their overall quality of life [ 9 ].

2. Social Isolation and Discrimination

Stigma can lead to social isolation and discrimination for those affected by mental health issues. Brohan and Thornicroft (2010) found that individuals with mental health disorders often face discrimination in multiple life domains, including employment and interpersonal relationships [ 2 ]. The negative stereotypes and misconceptions surrounding mental illness often result in a lack of understanding and empathy from others, leading to social exclusion [ 10 ]. Individuals with mental health issues might face discrimination in various aspects of life, including the workplace, where they might encounter bias in hiring, job retention, and career advancement. Furthermore, to complicate matters, discrimination can further strain personal relationships, as friends and family may distance themselves due to discomfort, fear, or misunderstanding, exacerbating feelings of isolation and loneliness [ 9 ].

3. Reduced Treatment Adherence

Stigma can significantly impact adherence to mental health treatments. Sirey et al. (2001) found that perceived stigma predicted treatment discontinuation in older adults with depression [ 11 ]. People living with mental health conditions may avoid or discontinue treatment due to fear of being identified as a mental health patient. This fear could stem from concerns about the stigma associated with visiting mental health facilities, taking psychiatric medications, or being seen engaging in therapeutic activities [ 12 ]. Non-adherence to treatment regimens can lead to suboptimal treatment outcomes, hinder recovery, and increase the risk of relapse or worsening symptoms. Furthermore, stigma can diminish self-efficacy, making individuals less likely to actively engage in their treatment process, which is crucial for successful recovery.

4. Perpetuation of Misconceptions

Stigmatizing attitudes towards mental illness contribute to the perpetuation of harmful stereotypes and misinformation. AsCorrigan and Watson (2007) discussed, stereotypes such as appearing dangerous, unpredictable, or culpable for their illness can make people with mental illness perceived inaccurately as dangerous or to blame for their condition, both internally and externally [ 12 ]. Stereotyping, deeply embedded in societal attitudes, can foster a culture of fear, rejection, and discrimination against individuals with mental health conditions. Misconceptions often result in people with mental health issues being perceived inaccurately as dangerous, unpredictable, or responsible for their condition. In addition, misinformation can hinder public understanding and acceptance of mental illness, exacerbating stigma while negatively influencing policy and legislation, leading to inadequate funding and support for mental health services.

5. Influence of Gender on Stigma

The impact of stigma on individuals with mental illness is known to vary across different social and demographic categories, including gender. Research evidence indicates that the experience of stigma related to mental illness can be significantly different for men and women, and these differences can be further influenced by cultural context.

In some societies, women seem to face higher levels of stigma related to mental health issues compared with men. A study by Al Krenawi et al. (2006) conducted in the Bedouin-Arab community found that women experienced a significantly higher degree of stigma associated with mental illness than their male counterparts [ 13 ]. This may be due to traditional gender roles and societal expectations, which often place women in a more subordinate position and associate mental illness with weakness or vulnerability. Women with mental illnesses may therefore face dual discrimination - first for their gender and then for their mental health condition. This can make women less likely to seek help for mental health issues, further exacerbating their condition and creating a vicious cycle of stigma and untreated mental illness.

However, the influence of gender on stigma is not uniform across all cultures. Ayalon and Areán's (2004) study on older adults in an Arab cultural context found that men reported higher levels of perceived stigma related to mental illness than women [ 14 ]. This discrepancy might be rooted in traditional masculine norms prevalent in many Arab societies, which value strength, stoicism, and emotional control. Mental illness, which is often erroneously perceived as a sign of emotional weakness or lack of control, can be particularly stigmatizing for men in these contexts. Furthermore, the expectation for men to be the primary earners and providers in the family can make the potential economic impacts of mental illness, such as unemployment or reduced productivity, particularly stigmatizing.

These findings underscore the importance of considering gender and cultural context in understanding and addressing stigma related to mental illness. It is crucial to develop and implement culturally sensitive strategies that consider these differences in the experience of stigma. This might involve, for example, promoting mental health literacy, challenging harmful gender norms, and providing gender-specific mental health services. We can move toward a more equitable and effective mental health care system by acknowledging and addressing the unique stigma-related challenges different groups face.

Ethnic and cultural variations in stigma

The stigma surrounding psychiatry, as research suggests, manifests differently across cultures due to various factors [ 7 ]. This stigma operates at various levels, including individuals, families, healthcare providers, and society, and cultural norms, religious beliefs, and social attitudes influence its manifestations and implications.

At the individual level, mental health issues may be internalized differently depending on cultural background. For instance, some Asian cultures may view mental health issues as a sign of personal weakness or a failure of self-control [ 15 ]. The internalization of stigma can significantly influence an individual's self-perception and willingness to seek help. In the family context, cultural beliefs also play a significant role in shaping attitudes toward mental health. A study by Yang and Kleinman (2008) found that in Chinese culture, mental illness is often attributed to social and interpersonal factors, such as family conflict [ 16 ]. Such attributions can contribute to a sense of shame or blame within the family, exacerbating the stigma experienced by the individual with mental illness.

Healthcare providers are not immune to these cultural beliefs and they can influence their practice. In some cultures, mental illnesses are viewed through a supernatural lens rather than a medical one. Girma et al. (2013) found that in Ethiopian culture, mental illness is commonly associated with supernatural causes, such as evil spirits or curses [ 17 ]. This widely held belief can influence healthcare providers' approach and potentially limit the provision of evidence-based psychiatric care.

Lastly, at the societal level, these cultural perceptions and beliefs can contribute to the broader social stigma surrounding mental health, leading to discrimination and social exclusion. Differences in societal perceptions across cultures can lead to distinct forms of discrimination, further compounding the challenges faced by individuals with mental health issues. Hence, understanding and addressing cultural stigma in psychiatry involves a multifaceted approach that considers individual, family, healthcare providers, and societal levels. Each level offers potential avenues for stigma reduction and improved mental health outcomes.

Asian Cultures

In many Asian societies, mental health issues are often perceived as a sign of personal weakness or a failure of self-control. The concept of 'face' is significantly influential, and the stigma associated with mental illness can be seen as bringing shame to the family [ 15 ]. For instance, a strong cultural emphasis on academic and professional achievement in South Korea contributes to stigmatizing attitudes toward mental illness, which may discourage individuals from seeking help [ 18 ].

African Cultures

Mental illnesses in some African cultures are often attributed to spiritual or supernatural causes such as curses or possession by evil spirits. This understanding can contribute to high levels of stigma and deter individuals from seeking psychiatric help [ 19 ]. In Ethiopia, the belief in supernatural causes of mental illness has been reported, leading to the stigmatization of affected individuals [ 17 ].

Arab Cultures

Mental illness in Arab societies is frequently viewed as a form of divine punishment. Religious belief perpetuating mental health stigma can lead to delayed or avoided treatment as individuals may resort to religious or spiritual interventions [ 20 ].

Latin American Cultures

In some Latin American cultures, mental illness is often attributed to personal weakness or lack of willpower. This perspective could stigmatize individuals with mental health disorders and discourage them from seeking psychiatric care [ 21 ].

Western Cultures

In Western societies, stigma often stems from misconceptions about mental illness, including the belief that individuals with mental health disorders are dangerous or unpredictable. While mental illness is recognized more as a health issue, stigma still exists, often resulting in social exclusion and discrimination [ 12 ].

Additionally, culture-bound syndromes, defined here as a combination of psychiatric and somatic symptoms that are considered to be a recognizable disease within specific cultures or societies, are a critical component of a discussion on cultural stigma in psychiatry. That is to say, culture-bound syndromes refer to unique mental health conditions closely tied to specific cultures or ethnic groups. For instance, among the Latino community, 'Ataque de Nervios,' characterized by uncontrollable shouting, crying, trembling, and sometimes aggressive behavior, is a recognized condition often associated with a stressful event such as a panic attack [ 21 ].

Hence, a clinician's awareness and understanding of such culture-bound syndromes can enhance their diagnostic and therapeutic effectiveness. In fact, a study conducted by Hughes and Wintrob (1995) in New York discovered a significant improvement in therapeutic relationships when clinicians were knowledgeable about culture-bound syndromes prevalent in their patients' cultures, such as 'Qigong Psychotic Reaction' in Chinese immigrants, a condition associated with overdoing Qigong, a type of spiritual martial art [ 22 ].

Furthermore, cultural competence, which includes knowledge about culture-bound syndromes, has a substantial impact on treatment outcomes. Culturally competent care, defined by an understanding and respect for cultural differences, can improve patient satisfaction and adherence to treatment. A systematic review by Truong et al. (2014) demonstrated the positive effect of cultural competence on healthcare outcomes, including in a Native American population suffering from 'Ghost Sickness,' a culture-bound syndrome characterized by feelings of terror, weakness, and a sense of impending doom, often linked to the perceived presence of the supernatural [ 23 ].

Simultaneously, addressing culture-bound syndromes can influence and reduce mental health stigma across cultures. Misinterpretation of these syndromes can contribute to stigma, as individuals might be wrongly diagnosed or misunderstood. For instance, Kirmayer's (2012) study on cultural variations in depression and anxiety found that misunderstanding culture-bound syndromes, such as 'Taijin Kyofusho,' a Japanese syndrome characterized by an intense fear that one's body or bodily functions are displeasing to others, could lead to misdiagnosis and increase stigma [ 24 ]. Practices that raise awareness of culture-bound syndromes offer a deeper, richer perspective on cultural influences on mental health. Awareness and understanding of these syndromes can enhance diagnostic and treatment approaches, optimize patient outcomes, and potentially contribute to reducing mental health stigma across various cultures.

Taken together, these studies highlight the importance of understanding cultural contexts when addressing the stigma surrounding mental health disorders and psychiatric care. The cultural beliefs and attitudes towards mental health disorders, summarized below in Table ​ Table1, 1 , influence how stigma is manifested and the approaches needed to reduce it effectively. By acknowledging cultural variations, more culturally appropriate and effective strategies can be developed to combat stigma and improve mental health care across different societies worldwide.

Strategies for addressing mental health stigma

Several strategies have been proposed in the literature to address the stigma surrounding psychiatry across cultures:

1. Public Awareness Campaigns

Awareness campaigns can be instrumental in dismantling misconceptions and fostering understanding of mental health disorders. Public awareness campaigns can dispel myths, reduce stigma, and encourage empathy towards affected individuals by promoting accurate information about mental illnesses, their prevalence, and the possibilities for recovery. For instance, a study by Pinfold et al., (2003) showed that public campaigns using direct social contact with people with mental illness could significantly improve public attitudes towards mental health [ 25 ]. The study by Pinfold et al., (2003) implemented educational interventions in UK secondary schools, consisting of video presentations and direct social contact with individuals who had personal experiences with mental illness [ 25 ]. The UK campaign's goal was to challenge common myths about mental illness and replace them with accurate information. The results showed that students exposed to this intervention demonstrated less fear and avoidance of people with mental health problems and were more likely to see them as individuals rather than defining them by their illness.

2. Cultural Competency Training for Healthcare Professionals

Medical education can equip healthcare providers with the necessary knowledge and skills to understand and respect their patients' cultural backgrounds and experiences, which is critical for reducing stigma in healthcare settings. Research indicates that healthcare providers who lack cultural competence may inadvertently contribute to stigma, further deterring patients from seeking help [ 26 ]. A study by Kirmayer (2012) found that cultural competence training improved healthcare providers' understanding of cultural influences on health behaviors and led to more effective patient-provider communication, thereby reducing perceived stigma [ 24 ]. For instance, a study in Australia provided cultural competency training to healthcare providers and found that their understanding of Indigenous Australians' health needs significantly improved [ 24 ]. They were able to better respect and incorporate Indigenous perspectives in treatment, which led to increased trust and better patient-provider relationships.

3. Peer Support Programs

People with lived experiences of mental health disorders who share their stories, can normalize mental health issues and challenge stigma. By providing real-life examples of individuals living with and managing their mental health disorders, peer-to-peer advocacy programs may debunk myths and reduce the perceived 'otherness' of mental illness. A study by Pitt et al. (2013) showed that peer support reduced self-stigma and improved self-esteem and empowerment among individuals with mental health disorders [ 27 ]. The study focused on "consumer-providers," individuals who had personally experienced mental health issues and were now providing support services to others. The findings demonstrated that consumer-providers significantly reduced self-stigma among service users, while also improving self-esteem and feelings of empowerment.

4. Community-Based Mental Health Services

Integrating mental health care into primary care and community settings can reduce the stigma associated with seeking psychiatric help. This emphasis on integrating measures for mental well-being along with other routine and standard primary care protocols allows mental health care to be more accessible and less intimidating, encouraging individuals to seek help when needed. A study by Thornicroft et al. (2015) found that community-based mental health services can reduce stigma and discrimination and improve mental health outcomes [ 28 ]. For instance, a program in India called the MANAS project integrated mental health services into primary care and community settings [ 28 ]. This approach not only made mental health services more accessible but also more 'normal' and less stigmatizing. The project reported a significant increase in the utilization of mental health services and a decrease in the experience of stigma among service users.

5. Evidence-Based Approach

Another approach to overcoming the barriers created by stigma is to use evidence-based methods to reduce mental illness stigma. A meta-analysis by Corrigan et al. (2016) found that various evidence-based interventions, including education and contact-based interventions, can effectively reduce mental illness stigma across cultures [ 9 ]. Contact-based interventions involve interaction between people with mental illness and members of the public to challenge negative attitudes and beliefs. Education-based interventions aim to increase knowledge and awareness of mental illness and reduce negative stereotypes. Educational interventions can be delivered in a variety of formats, such as in-person workshops, online courses, and mass media campaigns.

The role of the healthcare provider in ameliorating stigma cannot be overlooked. Moreover, a review by Ayalon and Areán (2004) suggests that mental health providers can play a critical role in reducing mental illness stigma by engaging in culturally sensitive practices [ 14 ]. For instance, mental health providers can develop cultural competence, which refers to the ability to provide effective services to individuals from diverse cultural backgrounds. Cultural competence involves understanding and respecting cultural differences, tailoring treatment to meet diverse populations' unique needs, and integrating cultural factors into treatment planning.

Research also highlights that stigma towards mental illness has significant implications for treating and managing mental health conditions. For example, several studies suggest that stigma can lead to delayed diagnosis and treatment-seeking behaviors [ 13 , 16 ]. This is concerning because early intervention is critical for managing mental illness and improving outcomes for individuals living with these conditions. Considering the documented impact of stigma on timely diagnosis and treatment-seeking behaviors, strategies such as public awareness campaigns, cultural competency training for healthcare professionals, peer support programs, community-based mental health services, and an evidence-based approach can play a crucial role in combating cultural stigma in psychiatry. These measures collectively contribute to improved awareness, understanding, and acceptance of mental health conditions, thus facilitating early intervention and better management of mental illnesses across diverse cultural contexts.

Conclusions

Stigma surrounding mental health and psychiatric care is a complex and multifaceted issue that varies across ethnic and cultural contexts. To effectively address and reduce stigma in mental healthcare settings, developing culturally sensitive interventions and promoting understanding and acceptance of mental health issues is crucial. By doing so, we can work towards improving access to mental health care and promoting the well-being of individuals and communities across the globe.

Overall, the literature suggests that stigma is a complex and pervasive issue that affects individuals with mental illness across cultures. The studies reviewed reveal that mental illness stigma is influenced by cultural beliefs, attitudes, and values, and can manifest in different ways across cultures. It is important to understand these cultural differences to develop more effective interventions to reduce mental illness stigma and improve outcomes for individuals living with mental illness. Furthermore, stigma across cultures impacts psychiatric care in various ways and can create significant barriers to effective treatment. Evidence-based interventions, including education, contact-based interventions, and culturally sensitive practices can help overcome these barriers. Mental health providers should strive to develop cultural competence and deliver culturally sensitive interventions to meet the needs of diverse populations. Research to understand the impact of stigmatization of mental health patients and its impact in providing services is warranted. Reducing mental illness stigma is critical to providing equitable, effective, and compassionate psychiatric care to individuals with mental illness.

The authors have declared that no competing interests exist.

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Understanding the Many Layers of Mental Health Stigma

Stigma is pervasive in many parts of our society.  To name a few: immigrant communities, professions with high stress jobs, the LGBTQ+ community, people who experience homelessness, rural populations, religious communities, and the ones mentioned below.  Each community faces unique challenges in addressing mental health stigma, often requiring customized approaches to effectively support and encourage individuals to seek help.

The Cultural Dimension of Mental Health Stigma

It’s old news that mental health stigma is not a monolithic experience; it varies significantly across different cultures. In many Western societies, there has been a progressive shift towards openness and acceptance regarding mental health discussions. However, considerable challenges remain, particularly in cultures where emotional and psychological struggles are perceived as personal failings or family matters, not to be aired publicly.

For instance, in some Asian cultures, mental health issues are often stigmatized due to the high value placed on social harmony and family honor. Admitting to mental health struggles can be seen as bringing shame to the family. In contrast, Hispanic and Latino communities might experience similar stigma, compounded by language barriers and access to care issues, making them less likely to seek out mental health services. According to the American Psychiatric Association, only about 33% of Hispanic adults with mental illness receive treatment each year compared to the U.S. average of 43%.

Professional Stigma: The Case of the Military

Professional environments also profoundly shape attitudes towards mental health. One striking example is the military, where mental health stigma is particularly potent. Within the armed forces, there is a pervasive culture that equates mental toughness with physical strength and emotional stoicism. Admitting to mental health challenges is often seen as a sign of weakness, potentially jeopardizing one’s career, reputation, and role within the unit.

Statistics paint a concerning picture: according to a report from the Substance Abuse and Mental Health Services Administration (SAMHSA), nearly 25% of active duty members show signs of a mental health condition. However, stigma leads to underreporting and under-treatment. The Department of Defense’s 2014 survey found that only about 50% of military personnel who reported serious psychological distress sought mental health services. The repercussions of this are severe, not only affecting military readiness but also contributing to high rates of suicide among veterans. Indeed, the veteran suicide rate is 1.5 times greater than for civilians, according to data from the Department of Veterans Affairs.

Now, don’t let consistent connection of our military community to suicide in the media fool you. It’s not a “military” problem and the main reason why Give an Hour is highlighting it here is because we provide important mental health services to this community and have been since 2005.  However, there are similar storylines in other professional groups. According to the CDC , major industry groups with the highest suicide rates included mining, construction, art/entertainment/recreation, agriculture, construction, farming, and a few more.  In fact, nail salons for females and spectator sport for males were both in the top five for highest suicide rates by detailed industry groups.

Age-Related Stigma

On the other end of the spectrum, older adults who grew up in eras with more pronounced mental health stigma might view mental health struggles as a taboo topic, making them less likely to seek help or even discuss their experiences.

The Impact of Not Receiving Help

Moving Forward: Letting Go of Stigma

To combat mental health stigma, a multifaceted approach is needed. Education plays a critical role in debunking myths and normalizing mental health discussions. In the military, initiatives like mandatory mental health screenings and integrating mental health training with regular training routines could help normalize care-seeking behavior.  Give an Hour is exploring this space with our Military partners with our peer support trainings.

Communities and leaders must advocate to improve access to mental health services and honestly consider the impact of receiving these services, ensuring these services are culturally competent and accessible to everyone, regardless of background or profession. For those in the military, enhancing confidentiality and offering support programs tailored to their unique experiences and needs can encourage more service members to seek help.

As we observe Mental Health Month and Military Appreciation Month, reducing stigma, increasing awareness, and improving access to mental health services are crucial steps toward a healthier, more understanding society where no one has to suffer in silence.

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Interventions to Reduce Stigma Related to Mental Illnesses in Educational Institutes: a Systematic Review

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• Published: 05 May 2020
• Volume 91 , pages 887–903, ( 2020 )

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• Ahmed Waqas   ORCID: orcid.org/0000-0002-3772-194X 1 ,
• Salma Malik 2 ,
• Ania Fida 3 ,
• Noureen Abbas 4 ,
• Nadeem Mian 5 ,
• Sannihitha Miryala 6 ,
• Afshan Naz Amray 7 ,
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• Sadiq Naveed 9  

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This investigation reviews the effectiveness of anti-stigma interventions employed at educational institutes; to improve knowledge, attitude and beliefs regarding mental health disorders among students. Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist guidelines were followed and protocol was registered in PROSPERO (CRD42018114535). Forty four randomized controlled trials were considered eligible after screening of 104 full-text articles against inclusion and exclusion criteria.

Several interventions have been employed to tackle stigma toward psychiatric illnesses, including education through lectures and case scenarios, contact-based interventions, and role-plays as strategies to address stigma towards mental illnesses. A high proportion of trials noted that there was a significant improvement for stigma (19/25, 76%), attitude (8/11, 72%), helping-seeking (8/11, 72%), knowledge of mental health including recognition of depression (11/14, 78%), and social distance (4/7, 57%). These interventions also helped in reducing both public and self-stigma. Majority of the studies showed that the anti-stigma interventions were successful in improving mental health literacy, attitude and beliefs towards mental health illnesses.

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Introduction

Mental health disorders are prevalent worldwide, with detrimental personal, social and financial consequences [ 1 ]. It is estimated that adult mental and substance disorders account for 7% of all global burden of diseases and 19% of all years lived with disability [ 2 ]. Overall, mental health illnesses account for 16% of the global burden of disease and injury in people aged 10–19 years, with suicide being the third leading cause of deaths in adolescence [ 2 ]. Adolescents with behavioral disorders are particularly vulnerable to social exclusion and stigma, educational difficulties, overall poor health and risk-taking behaviors (e.g. sexual risk taking, substance use and aggression) [ 3 ]. Despite their presentation as a major public health concern, these conditions often go undetected and untreated. And individuals with mental health disorders report distress and poor access to healthcare due to fear of stigma, prejudice and discrimination in the society [ 3 ]. Among adolescents especially, the prevalent stigma in the educational setting, can exacerbate loneliness and isolation, often associated with suicidal behaviors [ 3 ].

Stigma, in general, is conceptualized as a feeling of disgrace, shame, and self-blame that results in social exclusion, isolation, and embarrassment [ 4 ]. Elliot et al., report that branding of individuals with mental illnesses is often associated with deviance, dangerousness and social illegitimacy [ 5 ]. These individuals, therefore, experience “label avoidance” restricting help-seeking and fearing negative reactions from others [ 4 ]. These stigmatizing perceptions toward individuals with mental illnesses can manifest in discriminatory forms such as withholding access to care, coercive treatment, avoidance, and segregated institutions ( structural stigma ) [ 6 ]. Thus, these individuals are burdened by the distress of their symptoms and the distress of the stigma.

The stigma is often divided in two forms; public stigma and self-stigma [ 6 ]. Public stigma is described as the attitude and reaction of general population towards people with mental illnesses while self-stigma corresponds to the internalized shame, guilt and poor self-image caused by acceptance of the societal prejudice [ 6 ]. Unfortunately, stigma towards mental illnesses is prevalent among all strata of our society including medical professionals [ 6 ]. This stigma is often aggravated by the stereotypical and prejudiced portrayal of mental illnesses in the media. Empirical investigations on media reporting suggest that individuals with mental illnesses are shown as deviants: “homicidal maniacs”, weaker individuals, and one with childlike perceptions [ 6 ]. Mental health illnesses and associated stigma lead to a vicious cycle resulting in poor access to mental and physical healthcare, decreased life expectancy, social exclusion in form of academic termination, unemployment, poverty, homelessness, and contact with criminal justice systems [ 7 ].

The issue of stigma toward mental illnesses is even more complex among adolescents- According to De-Luca, research in this domain is scarce (accounting for 3% of research) [ 8 ]. It is important to understand it among youth, delineate processes and barriers especially mental health attitudes and knowledge and help-seeking behaviors [ 8 ]. This is especially important because adolescence is a crucial period in an individual’s psychosocial and emotional development. At this age, the need for peer approval and inclusive social networks dictate how an adolescent cope with the double burden of mental health problems and rejection from classmates [ 8 ]. Understanding the dynamics of stigma and effects of peer perception in educational settings on identity development of the youth with mental illnesses is particularly important. This has been found to be a significant barrier in over 68% of the countries globally in a survey conducted by the World Health Organization (WHO) [ 8 ].

The WHO explicitly recommends developing programs to improve stigma and psychiatric outcomes. Recent reviews examining anti-stigma interventions in high-income countries, have shown short-term improvement in knowledge, awareness and in attitude towards mental health illnesses [ 9 ]. Studies measuring long-term effectiveness (beyond four weeks) suggested improvement in attitude and knowledge but these benefits could not translate into improvement in behavioral outcomes [ 9 ]. However, there have been fewer to no evidence synthesis efforts for educational institute -based interventions especially in the low- and middle-income countries (LMIC). Therefore, to address this paucity of data, the present review aims to summarize evidence pertaining to anti-stigma interventions for mental illnesses in educational institutes.

This systematic review follows the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist [ 10 ]. Its protocol was registered apriori in PROSPERO (CRD42018114535).

Operational Definitions

Using the framework of consensus study report on The Evidence for Stigma Change , we defined public stigma as societal reaction to an individual’s mental illness [ 11 ]. We included evidence pertaining to all the societal groups irrespective of education, socioeconomic strata or occupation. Self-stigma was defined as internalized feelings of shame, guilt and worthlessness in reaction to societal stigma [ 11 ].

Search Process

To gain an understanding of these interventions in a broader scope, we did not limit ourselves to specific psychiatric diagnoses, and made use of general search terms pertaining to psychiatric illnesses. However, we also included several terms pertaining to common mental disorders among adults and pediatric population to ensure none of the disorders important in the context of global mental health are missed. Eight academic databases including CINAHL, PubMed, Cochrane Library, Global Health Library, Virtual Health Library, POPLINE, Psycarticles, and Psycinfo and Web of Science, were searched on September 17th, 2018, using search terms noted in Table 1 . No restrictions or database filters were applied regarding language, time period or publication year. The database search was also augmented by manual searching of bibliography of eligible studies.

Study Selection

After automated removal of duplicates from bibliographic records using Endnote, we scrutinized their titles and abstracts against our pre-specified inclusion and exclusion criteria. The full texts of eligible titles identified in this phase were further scrutinized against the eligibility criteria. This phase was performed by two reviewers working independently from one another, under supervision of a senior reviewer.

We included all randomized controlled trials (RCTs) assessing the effectiveness of interventions or campaigns in educational institutions (schools, colleges, universities), that were primarily aimed to reduce stigma related to psychiatric disorders. No restriction of age, language, race, gender, ethnicity, geographic location, publication year will be applied. We did not consider any interventions which were not conducted in context of academic institutions.

Data Extraction & Analysis

Data extraction pertaining to eligible studies was performed using a standardized template by one reviewer, including bibliographic details, institutional and regional affiliations, characteristics of the study sample, and characteristics of interventions. Characteristics of study sample included the characteristics of the population of interest, age and geographical scope. While the characteristics of intervention focused on the targeted diagnosis, names of scales utilized to assess stigmatizing attitudes toward mental illnesses, and the primary outcomes measured. The interventions were stratified in three groups, according to their deliver agents: medical doctors, nurses, and psychology professionals. We also classified the interventions according to their theoretical orientations and noted the content of interventions. Later, a careful analysis of the theoretical orientation and content of interventions by the senior authors, based on an adapted version of matching and distillation framework. This enabled us to unpack these interventions into common elements or strategies employed.

Risk of bias in the studies was assessed using the Cochrane’s tool for assessment of risk of bias in RCTs across several matrices: a) randomization procedure b) allocation concealment c) blinding of participants and personnel d) blinding of outcome assessors e) attrition bias f) Other biases. Data extraction and quality assessment were performed by two independent reviewers and any disagreement were resolved by discussion or the guidance of senior reviewer. Unfortunately, due to methodological and statistical heterogeneity, we deferred the application of meta-analysis, to yield the pooled effectiveness of these interventions in reduction of stigma towards mental illnesses.

Our academic searches yielded a total number of 978 non-duplicate references, which were screened for eligibility based on their titles and abstracts. Out of these, 104 full texts were retained after exclusion of 868 citations. Thereafter, 44 RCTs s were deemed eligible after a careful review of their full texts, against the inclusion and exclusion criteria set apriori. Detailed results have been presented in PRISMA flow diagram (Fig.  1 ).

PRISMA Flow Diagram

Study Characteristics

The eligible publications were published between the years 1998 and 2018. A majority of these interventions were conducted in high income countries and regions including USA ( n  = 15), Australia ( n  = 7), Greece ( n  = 4), UK ( n  = 3), Germany (n = 1), Canada (n = 1), Portugal (n = 1), Taiwan (n = 1), Hong Kong (n = 1), Spain (n = 1), Japan ( n  = 2), and Korea (n = 1). While only 6 studies were conducted in upper and lower middle-income countries including China (n = 2), Russia ( n  = 2) Nigeria (n = 1) and Brazil (n = 1). Low income countries did not contribute to any RCTs in this domain.

Setting & Delivery of Interventions

Most of the evidence was from RCTs conducted in the context of urban settings ( n  = 27), followed by mixed settings ( n  = 5), suburban (n = 4), and rural (n = 1). The geographical region was unspecified in seven studies. A higher proportion of interventions ( n  = 20) were conducted in school settings (primary school, secondary schools, high school). This was followed by graduate schools/university setting ( n  = 6), undergraduate and graduate students enrolled in psychology courses (n = 5), non-psychology undergraduate setting ( n  = 3), and adult schools (n = 2). Six studies were conducted in medical schools (n = 3) and nursing schools (n = 3). Among these studies, 25 were conducted in adults or predominantly adult population, 18 in adolescents or predominantly adolescent population, and one in children. The age ranged varied widely with lowest mean age of 13 years [ 12 ] and highest was 43.1 years [ 13 ].

Quality Rating

Random sequence generation was at a high/unclear risk of bias among 22 trials and allocation concealment (29 RCTs). Frequencies of studies reporting a high risk/unclear across other domains of Cochrane risk of bias tool were: blinding of outcome assessors ( n  = 35), blinding of participants and personnel ( n  = 31), attrition bias ( n  = 14), other sources of bias ( n  = 5), and selective reporting ( n  = 1). A total of 35 studies were rated as having a high risk of overall bias i.e. ≥ 3 matrices of risk of bias tool were rated as having unclear or high risk of bias for these studies (Figs.  2 and 3 ). Figure 2 presents a clustered bar chart exhibiting frequencies of high, unclear and low risk bias across all matrices of Cochrane risk of bias tool.

Risk of Bias Graph

Mental health conditions targeted in stigma reduction interventions

Mental Health Conditions

Mental health illnesses, in general, were the target of these interventions in 24 studies whereas six studies targeted depression. Other targeted diagnoses were psychosis and schizophrenia ( n  = 6), autism spectrum disorder ( n  = 2), anxious-ambivalent attachment ( n  = 1), anorexia nervosa (n = 1), and suicide (n = 1). One study focused on both depression and Tourette syndrome whereas one study addressed depression and schizophrenia. One intervention addressed engagement in psychotherapy treatment. A summary of mental health condition targeted is mentioned in fig.  3 .

Intervention Characteristics

Delivery agents of interventions included researchers ( n  = 17), specialist psychiatrists, and psychologists ( n  = 7), trained mental health professionals (n = 6), school teachers/course instructors ( n  = 4), graduate students ( n  = 2), and peers with lived experiences (n = 2) and researchers and teachers as delivery agent (n = 1). This information was missing for five studies. Numbers of sessions ranged from 1 to 8 sessions where a high proportion of interventions ( n  = 25) were delivered in only one session. The numbers of sessions were unspecified in seven studies. Studies delivered the following number of interventions: two sessions(n = 4), three session (n = 4), four sessions (n = 1) and six sessions (n = 2) and eight sessions (n = 1). The duration for whole program was categorized into studies with duration of one day ( n  = 11), one day to one week ( n  = 8), one to four weeks ( n  = 3), and longer than one month ( n  = 20). The duration was not mentioned in one study [ 14 ] while another study had mixed duration depending on the type of intervention employed [ 15 ]. The longest duration of an intervention was 48 weeks [ 16 ]. The duration for each session varied from 20 min to 12 h.

Strategies & Elements of Interventions

These stigma reduction interventions constituted several different strategies as summarized in fig.  4 , most common of which were psychoeducation through lectures and discussion with mental health professionals and use of case vignettes and scenario-based interventions. Psychoeducation was also delivered via online platforms including website messages, video-based instructions, and educational short messaging service (SMS). Another important strategy highlighted in this review was contact-based learning where two most important intervention elements were role play and contact-based learning with individuals struggling with mental illnesses. The included interventions used either one teaching method or a mix of the above-mentioned.

Summary of strategies employed in stigma reduction interventions

Psychoeducation

Psychoeducation was employed in 25 studies using a variety of delivery techniques, mostly based on etiological models of psychiatric illnesses. These interventions educated participants about different attributes of mental health disorders such as epidemiological factors, clinical features, course of illnesses, and available treatment options. They were delivered through didactic lectures [ 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 ], photographic images of billboard messages [ 14 ], short educational messages [ 25 , 26 ], video messages [ 27 ], structured courses and workshops for students [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 ], and distribution of booklets and slideshows [ 29 ]. Some of authors utilized a multimodal approach for delivering their interventions, for instance, Papish et al. (2013) structured a course on different mental illnesses using teaching methods such as didactic teaching, case-based teaching with group discussions, and an optional movie night [ 28 ]. Pereira and colleagues (2014) used a mixed approach by using tutorials, videos, interactive discussion, web conference, and written text support to educate participants [I3]. A few of these interventions provided an overview of etiology of mental health disorders; biogenetic, biochemical, neurobiological, biopsychosocial, and contextual factors. Banntanye et al. [ 17 ] formulated an educational intervention based on genetic and heritability of mental health disorders as well as a biopsychosocial model involving a complex interplay of biological, social, and psychological factors [ 17 ]. Two more models were part of several interventions, for instance, the contextual model linked complicated life situations with etiology of mental health disorders and biomedical factors where neurochemical changes in the brain were studied as a cause of psychiatric disorders [ 30 ]. Using a similar model, Han and colleagues presented neurobiological factors as a cause of mental health disorders, in their interventions [ 19 ].

Bespoke Multimodal Stigma Reduction Interventions

Three studies used Mental Health First Aid (MHFA) [ 31 , 32 , 33 ] as a structured training module to address risk factors and clinical features of common mental health disorders including depression, anxiety, substance use disorders, psychosis, and eating disorders. This intervention program also educated participants on strategies to assist someone experiencing mental health crises. Two interventions tested the effectiveness of health education tools, the fotonovlea or Secret Feelings that addressed misconceptions and stigmatizing attitudes through posed photographs, captions, and soap opera narratives [ 34 , 35 ]. The Same or Not Same intervention focused on education about schizophrenia followed by an opportunity to contact with individuals struggling with schizophrenia. In the Video-Education Intervention, a video was followed by educational message. In this intervention, there was information about the cause, timeline, course of illness, and different myths [ 36 ]. In a classroom-based intervention used in two studies, projective cards were used to understand misperceptions about mental illnesses and discussion to overcome these misperceptions was carried out. In last part, patient’s narratives and role of media were also added [ 37 , 38 ].

Case vignettes or scenario-based techniques were employed in six interventions to enhanced understanding of different aspects of mental health disorders [ 15 , 39 , 40 , 41 , 42 , 43 ]. Mann et al. evaluated change in stigmatizing attitudes by comparing scenario-based teaching to provide an opportunity to read education material on mental illnesses [ 15 ]. Similar intervention was carried out by using case vignettes [ 40 ] and documentary film [ 42 ] to address stigma. In another intervention, participants were delivered a lecture on schizophrenia whereas second group had a scenario-based activity of four individuals with schizophrenia in remission [ 39 ]. It highlights the living arrangements, daily activities, needs, interests and social support system of individuals with schizophrenia [ 39 ]. Nam and colleagues (2015) used documentary to create stigma manipulating scenarios among college students with anxious-ambivalent attachment [ 42 ]. In another study, the intervention group received didactic lectures regarding factual knowledge about mental health and illness followed by case vignettes. The myths associated with mental illness, positive attitudes toward persons with mental illness, and resources to receive mental health care were examined during a group activity [ 43 ].

Contact-based interventions were assessed in 10 studies by using direct interaction with patients [ 12 , 44 , 45 , 46 , 47 , 48 , 49 , 50 ] and filmed or video techniques [ 12 , 45 , 48 , 51 , 52 ]. In an intervention, two service users on DVD described personal view of mental health and stigma followed by fact-based experience in nine key areas related to mental health disorders [ 45 ]. In Live intervention group, this exercise was conducted in live sessions whereas the control interventions delivered information about mental health and related stigma through a lecture [ 45 ]. In Our Own Voice (IOOV) , two group facilitators with history of mental health disorders addressed five components including “Dark Days, Acceptance, Treatment, Coping Mechanism, and Success. It also had corresponding videotaped sessions for each component [ 46 , 47 ]. The eBridge intervention was structured on personalized feedback about symptoms in individuals with history of suicidal behaviors along with access to resources based on the principles of motivational interviewing [ 53 ]. Self-affirmation psychotherapy was provided in a study by Lannin and colleagues [ 54 ]. In this program, an individual with mental illness is advised to repeat a positive statement or set of such statements about the self on a regular basis to inspire positive view of the self and reduce negative thinking, or low self-esteem [ 54 ]. Chisholm and colleagues (2016) work especially among adolescents concluded that educational interventions provide far more promising results than contact-based interventions [ 44 ]. Although not consistent with previous literature reporting this comparison [ 44 ], Chrisholm et al., argue for a different teaching approach for adolescents keeping in view their level of maturation, influence of the media, and that the information processing and understanding of mental illnesses differ among adolescents, as proposed in several conceptual frameworks [ 44 ].

The eligible studies reported effectiveness of these intervention on a heterogeneous body of scales, which measured stigma toward psychiatric illnesses, pre and post knowledge among participants, attitudinal and intentional changes, and recognition of psychiatric symptomatology. Moreover, help-seeking practices were also measured in these interventions. A lot of importance was placed on public stigma rather than self-stigma. The most frequent outcome was stigma ( n  = 25), followed by changes in knowledge levels (n = 25), attitude ( n  = 11), help-seeking (n = 11), social distance ( n  = 9), and recognition and literacy regarding depression ( n  = 5). Majority of studies reported an improvement in stigmatizing attitudes towards mental health disorders with improvement in both public and self-stigma (Fig.  5 ).

Proportion of studies demonstrating reduction in stigma related outcomes

Among 25 studies addressing stigma, where a higher proportion ( n  = 19) studies reported a significant improvement in stigma levels at the study endpoint. In a study, comparing biogenetic intervention with a multifactorial intervention, there was no difference among both intervention groups from baseline line to study endpoint [ 17 ]. However, there was a significant improvement among these intervention groups from the control group. While deciphering between personal and public stigma, five studies reported stigma-related outcomes for these two concepts (personal = 3, public = 2) with only one study showing non-significant improvement [ 33 ]. Another study saw improvement at the first timepoint, but it failed to last until second visit. Out of five studies showing non-significant or no improvement, three reported non-significant change [ 14 , 26 , 40 ] whereas two reported no change from baseline to study endpoint [ 23 , 47 ].

The study on biological anti stigma intervention by Boucher and colleagues (2014) attributed non-significant improvement in stigma scores to the conceptualization of depression in as a brain disease whereas depression results from various biolopsychological factors [ 14 ]. Two studies using psychoeducation as a tool of change pointed out that lack of significant improvement in stigma is possibly due to sole use of educational interventions [ 23 , 26 ]. Pinto-Foltz and colleagues had a smaller sample size resulting in the lack of significant improvement in stigma scores [ 47 ].

Beliefs and Attitudes

The attitude was reported in 11 studies with improvement in eight studies at the study endpoint compared to baseline. One study reported improvement in authoritarianism and social restrictiveness (sub-scales of Community Attitudes Toward Mental Illness scale) while benevolence and community mental health ideology subscales failed to show significant improvements [ 42 ]. In remaining three studies, there was non-significant or lack of improvement. The duration of program has limited impact on the favorable results as one intervention had duration of three days [ 43 ]. The two other studies had duration of one [ 24 ] and eight weeks [ 32 ]. Winkle et al. (2017) reported small effect size for flyer or control group and medium effect size for the experimental group [ 22 ]. After a psychiatry clerkship, medical students reported improvement in stigmatizing attitudes but there was no improvement in attributions regarding responsibility and readiness to provide care to patients with mental illnesses [ 50 ]. Moreover, the lack of educational intervention may not be sufficient to change beliefs [ 26 , 36 ]. This underscores the need to strengthen medical school clerkships as well as enhancing the ways to interact with this patient population.

Help-Seeking

Intention and attitude to seek help were reported in 11 studies with improvement in eight studies. One study reported similar improvement among the intervention and control groups because the control group also received psychoeducation through brochures on depression [ 35 ]. In remaining three studies, there was non-significant or lack of improvement post-intervention [ 23 ]. In a rural-area based study, there was improvement in stigma and attitudes but it failed to materialize this change into help-seeking behaviors [ 23 ]. It is worth noting that adolescents in rural areas were more likely to turn to family and friends than seeking help from professionals such as school counselors [ 23 ]. In another study, the lack of improvement was regarded to inadequate dosage or duration of the program among adolescents [ 29 ]. The causation of depression as “neurological disease” was also a barrier and may have prevented college students from seeking help [ 14 ].

Knowledge of Mental Health Disorders and Treatment

The knowledge of mental health disorder and treatment was assessed in nine studies and depression literacy in five studies. Out of these 14 studies, 11 reported significant improvement in help-seeking with no improvement in three studies. It is interesting to note that two studies reported improvement in knowledge regarding depressive disorders and relevant treatment but engagement in these treatments was non-satisfactory, with a drop rate exceeding 44% [ 23 , 29 ]. The lack of improvement in three studies was reported due to lack of past experience or contact with individuals with mental illnesses [ 33 , 47 ]. In study by Pinto-Foltz, the improvement was more noticeable at 4 and 8-week timepoints among intervention group, owing to past exposure of participants in control group to mental health information [ 4 ]. For Depression Fotonovela intervention, lack of difference in improvement among both experimental and control groups was due to ceiling effect and higher baseline knowledge scores [ 34 ].

Social Distance

The social distance was assessed in seven studies with four studies reporting favorable results. Majority of the studies with favorable results had two important components including opportunity to contact with individuals with mental illness ( n  = 3) and participants with a background in medicine or nursing ( n  = 4). In one of these studies, a combination of two education strategies didactic education and video group fared better than the education group alone. Three of the studies reported a non-significant outcome; these studies lacked contact with individuals diagnosed with mental health disorders. Moreover, participants in these interventions were adult individuals with no background in relevant professions [ 34 ], middle school students, or students enrolled in psychology courses [ 55 ].

This article reviews the evidence for various aspects of stigma towards mental health disorders in educational settings. These interventions were carried out in university, college, and school settings, targeting a wide range of mental health disorders. Duration of intervention varied widely with most of the interventions lasting for more than four weeks. For outcome measure, majority of studies reported significant improvement for stigma (19/25, 76%), attitude (8/11, 72%), help-seeking (8/11, 72%), knowledge of mental health including recognition of depression (11/14, 78%), and social distance (4/7, 57%). It is worthwhile to appreciate that all these outcomes measure are intercalated and have a directional effect on each other.

Most of the studies included in this review focused on reduction of public stigma rather than self-stigma, two different yet highly intercalated concepts. The reviewed interventions targeted one or more of the core stigmatizing behaviors especially fear and exclusion and authoritarianism that people with mental illnesses face and inspire benevolence and compassion among the intervention recipients [ 56 ]. This was done through different strategies, most frequently being psychoeducation through didactic lectures. Other strategies were contact-based interventions, and role-plays to address stigma towards mental illnesses. Reduction of self-stigma was done through a specialized program of self-affirmation therapy, to inspire moral and adaptive adequacy of the self, with a main aim to inspire positive view of self [ 54 ].

All of these interventions followed the recommendations proposed by Corrigan et al., who recommended three ways to combat public stigma: protest, education, and contact to combat the existing stigma [ 56 ]. The latter approaches were employed frequently, however, protest in response to the stigmatizing environment propagated by public statements, media reports, and advertisements was absent in these initiatives [ 56 ]. In addition, it is also imperative to engage health care providers, stakeholders, policymakers, for development of campus-based policies combating stigma [ 57 ]. We did not find any interventions designed at the policy level as well as the system level or reporting their effectiveness and wide-ranging implications and socioeconomic benefits.

A plethora of research in recent decades has shown that stigmatizing attitudes toward mental illnesses are strongly driven by sociocultural and religious factors, as well as individual factors especially empathy and experience and education levels [ 58 , 59 , 60 , 61 ]. This is particularly relevant in context of low- and middle-income countries where such attitudes and beliefs toward mental illnesses are prevalent even among the learned. For instance, the belief in djinni possession, black magic and divine punishment as causes of mental illnesses are rampant in the Indian subcontinent. This requires the development of very culture specific interventions in these countries. And yet only one of the interventions targeting stigma toward mental illnesses has been developed in these countries [ 62 ]. This is a major gap that must be addressed by development of interventions that aim to mitigate negative cultural and social norms as well as inspire benevolence toward people with mental illnesses. It can be argued that development, testing and implementation of relevant interventions in poorer nations can foster an alternative and correct view of mental illness resulting in improved knowledge and linkage to services.

This systematic review has several strengths. An electronic search of academic databases combined with manual searching for references provides an exhaustive search for relevant evidence. It provides an overview of RCTs of interventions targeting stigma towards mental health in educational settings as well as the strategies used in each intervention and different components of these interventions. Combined with a qualitative assessment of the theoretical orientation of these intervention as well as assessment of risk of bias, makes this review an important source for development and testing of future interventions in this area. However, this review also has several limitations. Due to heterogeneity, varying intervention design, and different outcome measures, meta-analysis could not be performed. It is also important to consider the higher risk of bias in included studies while interpreting the results of these studies. These interventions were important in challenging the stereotypes and prejudice by providing an opportunity of social contact with individuals with mental illnesses, engaging in myth-busting, and increasing awareness of mental illnesses through education via text, lecture, or film [ 7 ]. However, due to lack of meta-analytic evidence, it is difficult to ascertain if a single component intervention is any better than its multi-component counterparts such as DVD or direct contact group work better than other. Although, generally a greater improvement was reported with comprehensive approaches to combat stigma [ 45 ].

This review provides some promising empirical support for anti-stigma interventions regarding mental health disorders aimed at students. These interventions were somewhat successful in reducing both self and public stigma. This highlights the need for progressively thorough, better-quality evaluations conducted with more diverse samples of the population. As it appears that short-term interventions often only have a transient effect, the implication is that researchers should study longer term interventions and to use the intervening time and outcome data to improve the interventions along the way. Future research should explore to what extent changes in students’ knowledge, attitudes, and beliefs can result in earlier help seeking.

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Waqas, A., Malik, S., Fida, A. et al. Interventions to Reduce Stigma Related to Mental Illnesses in Educational Institutes: a Systematic Review. Psychiatr Q 91 , 887–903 (2020). https://doi.org/10.1007/s11126-020-09751-4

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Fortuna KL , Lebby S , Geiger P, et al. Lived Experience–Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness : A Consensus Statement . JAMA Netw Open. 2023;6(5):e2315479. doi:10.1001/jamanetworkopen.2023.15479

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Lived Experience–Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness : A Consensus Statement

• 1 Geisel School of Medicine, Department of Psychiatry, Dartmouth College; Concord, New Hampshire
• 2 Collaborative Design for Recovery and Health, Nashua, New Hampshire
• 3 College of Nursing and Health Sciences, The University of Vermont, Burlington, Vermont
• 4 Optum/UnitedHealthcare, Minneapolis, Minnesota
• 5 International Association of Pre-Menstrual Disorders, Boston, Massachusetts
• 6 The Hormel Institute, University of Minnesota, Austin, Minnesota
• 7 OPROMAMER, Rwanda, Africa
• 8 HealthPartners Institute, Minneapolis, Minnesota
• 9 University of Rwanda, Rwanda, Africa
• 10 Institute for Health Metrics and Evaluation, University of Washington, Seattle, Washington
• 11 Department of Health Metrics Sciences, University of Washington School of Medicine, Seattle, Washington
• 12 University North, University Centre Varazdin, Varazdin, Croatia
• 13 The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts
• 14 Centerstone, Clarksville, Tennessee
• 15 Center for Behavioral Health, University of Pittsburgh, Pittsburgh, Pennsylvania
• 16 Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania
• 17 VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Pennsylvania Healthcare System, Pittsburgh
• 18 Northeast Program Evaluation Center, Department of Veterans Affairs, West Haven, Connecticut
• 19 National Center for PTSD Evaluation Division, Department of Veterans Affairs, West Haven, Connecticut
• 20 Riverside Community Mental Health, Dedham, Massachusetts
• 21 Rutgers University, Department of Biology, Camden, New Jersey
• 22 Families in Trauma and Recovery, PeerLed, Lived Experience Social Enterprise, Fife Renewables Innovation Centre, Ajax Way, LEVEN, Fife, Scotland
• 23 Temple University, Department of Social and Behavioral Sciences, College of Public Health, Philadelphia, Pennsylvania
• 24 The Bridge, New York, New York
• 25 Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts
• 26 Harvard Medical School, Boston, Massachusetts
• 27 VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Connecticut Healthcare System, West Haven, Connecticut
• 28 Department of Psychiatry, School of Medicine, Yale University, New Haven, Connecticut
• 29 Johns Hopkins University School of Medicine, Baltimore, Maryland
• 30 Pat Deegan and Associates, LLC
• 31 Uncompagre Band of the Ute Indian Tribe from the Uintah and Ouray Agency in Fort Duchesne, Utah
• 32 Seven Counties Services, Inc, Louisville, Kentucky
• 33 Forbes Senior Contributor and, Rebel Talent
• 34 The National Council for Mental Wellbeing, Washington, DC
• 35 Pittsburgh Mercy, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
• 36 The Danya Institute, Silver Spring, Maryland
• 37 Office of Mental Health and Suicide Prevention, Department of Veterans Affairs, Washington, DC
• 38 Duke University School of Medicine, Durham, North Carolina
• 39 L.E.A.R.N. (Lived Experience Academic and Research Network) Queensland, Australia
• 40 National Alliance on Mental Illness, Arlington, Virginia
• 41 The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, Lebanon, New Hampshire
• 42 Community Care Behavioral Health, UPMC Insurance Services Division, Pittsburgh, Pennsylvania
• 43 Massachusetts Department of Mental Health, Boston, Massachusetts
• 44 Health Science, University of Stavanger, Stavanger, Norway

Importance   People with serious mental illness (SMI), defined as a diagnosis of schizophrenia spectrum disorder, bipolar disorder, or disabling major depressive disorder) die approximately 10 to 25 years earlier than the general population.

Objective   To develop the first-ever lived experience–led research agenda to address early mortality in people with SMI.

Evidence Review   A virtual 2-day roundtable comprising 40 individuals convened on May 24 and May 26, 2022, and used a virtual Delphi method to arrive at expert group consensus. Participants responded to 6 rounds of virtual Delphi discussion via email that prioritized research topics and agreement on recommendations. The roundtable was composed of individuals with lived experience of mental health and/or substance misuse, peer support specialists, recovery coaches, parents and caregivers of people with SMI, researchers and clinician-scientists with and without lived experience, policy makers, and patient-led organizations. Twenty-two of 28 (78.6%) of the authors who provided data represented people with lived experiences. Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI, direct email, and snowball sampling.

Findings   The following recommendations are presented in order of priority as identified by the roundtable participants: (1) improve the empirical understanding of the direct and indirect social and biological contributions of trauma on morbidity and early mortality; (2) advance the role of family, extended families, and informal supporters; (3) recognize the importance of co-occurring disorders and early mortality; (4) redefine clinical education to reduce stigma and support clinicians through technological advancements to improve diagnostic accuracy; (5) examine outcomes meaningful to people with an SMI diagnosis, such as loneliness and sense of belonging, and stigma and their complex relationship with early mortality; (6) advance the science of pharmaceuticals, drug discovery, and choice in medication use; (7) use precision medicine to inform treatment; and (8) redefine the terms system literacy and health literacy.

Conclusions and Relevance   The recommendations of this roundtable are a starting point for changing practice and highlighting lived experience–led research priorities as an option to move the field forward.

People with serious mental illness (SMI), such as schizophrenia spectrum disorder, bipolar disorder, or major depressive disorder, die 10 to 25 years earlier than the general population, irrespective of geography, race and ethnicity, health care systems, or financing. 1 - 3 Poor diet, smoking, and physical inactivity are the prominent contributors to preventable early mortality in this population in the US. 4 Over the past 3 decades, health promotion and self-management interventions and national initiatives (eg, Substance Abuse and Mental Health Services Administration 10 × 10 campaign) 5 have promoted health behavior change to address modifiable risk factors in people with SMI. 6 Additionally, research agendas to address this health inequity, including a group gathered by the World Health Organization (WHO) and another, titled the Blueprint to Address Early Mortality, have been developed. 7 Despite these efforts, the mortality gap between those with SMI and the general population is increasing. 2 , 3 , 8 It is critical to consider alternative approaches to prevention and treatment.

Community engagement with people with SMI can inform research to make it relevant to target populations, potentially producing greater uptake and better clinical outcomes. 9 A new paradigm led by individuals with lived experience may reveal innovative avenues to address this health disparity. This report presents a lived experience–led research agenda to address early death in people with SMI.

We participated in and are members of the Early Mortality in People with SMI Roundtable, which convened virtually on May 24 and 26, 2022. The roundtable is a collaborative committed to addressing the early mortality health disparity in people with SMI through patient-centered research ( Table ). Twenty-two of 28 of the participants (78.6%) represented people with lived experiences.

Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI. Two of us (K.L.F. and R.W.) conducted a Google Scholar search using variations of search terms: early mortality and SMI and death, premature death, schizophrenia, bipolar and then emailed authors identified through this search. Those identified members recommended additional members using a snowball sampling framework. 10 Patient partners were identified through direct email to partners of the Collaborative Design for Recovery and Health, an international group of patients and scientists. The collaborative uses community-based participatory research with people with SMI to coproduce solutions to address community-identified needs. For example, this group developed the PeerTECH app designed to support the delivery of evidence-based practices by peer support specialists. 11

Session 1 began with a welcome and introductions, followed by a discussion on the scientific understanding of early mortality documented in the peer-reviewed literature. Next, one of us (D.J.) presented a story with a gap 12 to elicit gaps in the research. The story with a gap technique includes 2 contrasting pictures of before and after situations. Another one of us (R.W.) implemented “go wild” prompts (ie, “wouldn’t it be good if…?”) and reverse brainstorming to generate ideas about the causes of early mortality. Immediately following the first day, 3 of us (K.L.F., S.L., and P.G.) drafted a research agenda based on the gaps identified during the first day of the virtual convening. All authors were emailed a shared document of the draft research agenda 24 hours before the next session and were encouraged to review the materials. Session 2 began with a review of the draft research agenda in a shared document. One of us (R.W.) used multivoting, ranking, and problem-solving methods to help members refine language and ideas.

After the convening, all members received a web link to a shared document. Next, the roundtable used a virtual Delphi method—an empirically supported process used to arrive at expert group consensus 13 —to reach consensus ( Figure ). Participants responded to 6 rounds of virtual Delphi via email that prioritized research topics and agreement on recommendations. Participants were asked to rank items via the anonymous survey to allow for nuance in opinion and avoid the pitfalls of making binary choices. After each round, all responses were aggregated by one of us (K.L.F.) and shared with the group via email, and an anonymous survey link was sent until a 100% consensus of the authors was achieved.

The following recommendations are presented in order of priority as identified by virtual convening members.

Compared with the general population, people with SMI experience a substantially higher incidence and prevalence rates of trauma—between 51% and 98% of people in the public mental health system have experienced trauma at some point. 14 , 15 Trauma is defined as a psychological or emotional response to a disturbing or distressing experience 14 (eg, singular traumas, such as interpersonal violence, intergenerational trauma, and iatrogenic trauma, and ongoing traumas, such as food insecurity, racism, and discrimination). According to a longitudinal study of 4462 male veterans, the experience of trauma, in particular posttraumatic stress disorder, contributes to poor physical, emotional, and mental health and early mortality. 16 - 21 For example, people may develop harmful coping mechanisms, such as unhealthy eating, substance abuse, or self-harm. Biologically, the experience of trauma can also create inflammation in the body, which can lead to the development and exacerbation of conditions such as pulmonary and metabolic diseases. 22

Current recommendations, including those put forth by a group gathered by the WHO, 23 did not discuss trauma as a factor in early mortality. The Blueprint to Address Early Mortality 24 discussed the role of child abuse as a social determinant of health, which is an important type of traumatic event that may impact individuals throughout their lifespan.

We make the following recommendations. Existing or new interventions designed to increase the lifespan of people with SMI (ie, self-management and health promotion) currently do not address the role of trauma in early mortality. 6 Furthermore, research agendas, including those put forth by the WHO 23 and Lancet , 24 only recognized child abuse as a social determinant of health. Interventions need to recognize the role of trauma and its impact on the lifespan and potential impact on health behaviors. A strategic approach may be using community-engaged research to adapt interventions with widespread uptake, such as peer support, 20 to include intervention components that focus on addressing trauma (eg, emotional CPR). Methodologically rigorous studies can then integrate complexity science to use multimodal treatment to explore the role of trauma and its effect on early mortality and potential impact on health behaviors. Complexity science is physical, biological, and social systems research to understand complex systems. 25

We adopted a culturally informed definition of family, which includes immediate family, extended families (eg, grandparents, aunts, and uncles), chosen families (ie, people who have intentionally chosen to support each other regardless of blood or marriage), and informal supporters (eg, neighbors, school, and church). Family members and informal supporters provide unpaid care. 26

Current recommendations from the WHO recognize family interventions as an evidence-based practice to support individualized treatment or assist with interventions that focus on self-management or recovery. 23 Delivering family psychoeducation to caregivers and patients with schizophrenia spectrum disorders has shown improvements in caregivers’ functioning and burden and patient outcomes. 27 While important, to our knowledge, the impact of interventions that include family broadly defined on early mortality has not been explored scientifically. Future scientific exploration could examine the best practices to support engagement and collaboration using technology to promote the reach of these interventions.

We make the following recommendations. First, when possible, include family, extended family, and informal supporters in existing interventions to support their loved one in the community between intervention sessions. Such involvement may affect outcomes, such as early psychosis and relapse and rehospitalization rates, and it could improve social functioning and employment rates and increase hope and empowerment. For example, family psychoeducation (ie, an evidence-based approach designed to help families and informal supporters of people with SMI better understand mental health challenges) has been associated with great reductions in relapse and rehospitalization rates, higher employment rates, greater social functioning, and higher levels of hope and empowerment among people with an SMI diagnosis. 28 Subpopulation analyses should explore race and ethnicity, age, and gender. Second, consider the bidirectional impact of caregiving on the care partner. Examining family interventions, such as family member respite, family consultation, system navigation, family member training, and family psychoeducation—and their role in optimizing outcomes associated with early mortality—can support the advancement of this unpaid workforce.

Individuals with co-occurring disorders commonly have at least 1 mental disorder as well as a substance abuse disorder. 29 In 2020, for adults aged 18 years or older, people with an SMI diagnosis had the following prevalence rates of substance use disorders: 39.2% for marijuana, 47.8% for illicit drugs, 11.6% for opioids, 30.9% for binge alcohol use, and 37.4% for tobacco or vaped nicotine. 29 Individuals with co-occurring disorders are at an increased risk of premature drug death, suicide, and violent victimization. 29 Despite the high comorbidity of substance use and mental health challenges in the general population, 30 the mental health and substance abuse treatment systems remain mostly separate and create barriers to treatment for people with SMI. Many people with an SMI diagnosis have difficulty navigating both the mental health and substance abuse systems. 31

We make the following recommendations. First, research on integrated treatment and comparison with sequential and parallel models of care is needed. The Blueprint to Address Early Mortality recommends the following: integrated interventions as the highest standard and a clear referral policy between mental health and substance use treatment services in sequential or parallel treatments. 24 In contrast, a systematic review of the literature on a general (non-SMI) population 24 has reported preliminary evidence of this treatment system; however, a superiority or an inferiority trial has never been conducted with a fully powered sample. Research in this area could compare an integrated co-occurring disorders system with sequential or parallel treatment programs.

Second, a research area to consider is smoking cessation postintervention withdrawal in settings other than studies. Although most smokers with SMI want to quit 32 and cessation is most likely when both pharmacologic and psychosocial treatment are used, 33 cessation rates are low, and most smokers with SMI relapse months after treatment, 33 suggesting room for improvement in cessation treatments. An initial step may be the integration of qualitative research guided by implementation science to explore barriers and facilitators to cessation postintervention outside of study settings.

Historically, people with an SMI diagnosis have received inadequate physical health care. 4 Despite having twice as many health care encounters as the general population, individuals with SMI receive fewer screenings, prescriptions, diagnoses, and surgical procedures. 34 In response, health homes were developed to coordinate physical health care by integrating primary health care within community-based behavioral health care. Health homes have resulted in increased preventive screening; however, patients’ cardiometabolic outcomes associated with early mortality rarely improved. 20 Current recommendations indicate a need for increased screening for medical conditions alongside integrated care initiatives, including appropriate, timely interventions, care coordination, and collaboration with social welfare involvement. 23 Existing recommendations also specify the need to develop local, national, and global health policy around SMI; provide equitable access to universal health care; improve the use of medical investigation and treatment; and prevent diagnostic overshadowing (ie, physical conditions inaccurately characterized as being the result of a mental condition). 24

We make the following recommendations. First, social workers, nurses, home health aides, psychologists, primary care practitioners, and psychiatrists need exposure to people with SMI in residency via coursework in formal education or through continuing education and internships. This exposure can include (1) instruction on physical health, mental health, and social health complexity; (2) therapeutic techniques to support the integration of the patient’s voice into clinical encounters (eg, active listening); and (3) education on the history of the mental health system in the US from asylums to nontrauma-informed care and deinstitutionalization and how this experience may affect clinical encounters. Second, technology can be incorporated into clinical care to support clinicians in universal screening and the accuracy of diagnosis and treatment. For example, audio recordings of medical appointments between people diagnosed with an SMI and clinical practitioners can incorporate natural-language processing to record conversations longitudinally. Audio data can then be coded for self-reported symptoms and verified with medical records to study diagnostic accuracy.

The prevailing understanding of the cause of early mortality in people with SMI has been defined as poor health behaviors (eg, diet, smoking, and exercise); however, limited knowledge exists on the association between poor health behaviors and early mortality in people with SMI. McGinnis and Foege 35 reported the causes of death in the US were predominately due to poor health behaviors. This study was conducted with the general population and excluded people with SMI, yet these findings have been generalized to people with SMI. Furthermore, health behaviors in comparison with social determinants of health or patient-identified risk factors for early mortality may have a direct or mechanistic effect on early mortality and/or engagement in health behaviors.

Current recommendations from the WHO and the Blueprint to Address Early Mortality cite traditional social determinants of health, such as poverty, poor education, unemployment, homelessness, and childhood abuse as having an impact on mortality. 23 , 24 The WHO recommends stigma-reduction programs for people with SMI. The Blueprint to Address Early Mortality recommends that stigma within health care and among practitioners be addressed and that neuromotor adverse drug reactions, which carry stigma, be dealt with by research into psychotropic interventions. 24

We make the following recommendations. First, we recommend the development of a lived experience–powered research network 36 (ie, coproduced database that is governed by people with SMI and supports data collection directly from persons with an SMI). This research network can support examining outcomes meaningful to people with SMI in combination with biological, psychological (health behaviors), and social (loneliness) variables throughout the lifespan. This database can determine a longevity phenotype to guide intervention and drug development and an SMI exposome to allow for the examination of the relationships between the person, their environment, and health disparities. The database infrastructure can be designed to conduct population health research to accelerate the pace of science.

Appropriate administration of antipsychotic medications through continuous medication treatment and proper dosing reduces excess mortality in persons with SMI. 37 , 38 For example, the Clinical Antipsychotic Trials of Intervention Effectiveness Study, a nationwide public health–focused clinical trial, outlines a prescription protocol for people with schizophrenia at greater baseline risk for cardiometabolic events. 39 However, despite this advancement, the leading cause of death among people with an SMI diagnosis is cardiovascular disease, which is associated with a higher relative risk of dyslipidemia, smoking, diabetes, and obesity. 40

We make the following recommendations. First, decision aids or decision support could be integrated with decision-making to support informed patient decision-making regarding medication use. 41 The Antipsychotic Medication Decision Aid 41 - 43 is an example of a decision-aid intervention used during psychiatric visits. Development and implementation of additional decision-support tools for other drugs with adverse effects (eg, lithium) may expand our empirical understanding of the role of these aids in early mortality. Second, successful drug discovery may require exploring stem cell research, novel protein-drug conjugate modeling and assays, and advancement toward precision medicine. 44 - 46 One compelling proof of concept that links pertinent physiologic models of human disease to drug development endeavors is to advance the testing of experimental therapeutics using patient-specific induced pluripotent stem cell models. 47 This strategy, an advancement toward precision medicine, 47 has the potential to close the loop of discovery that is propelled by human illness biologic factors at every step of the process. In the future, such innovations hold considerable potential as a contribution to developing clinically effective drugs that address the issue of early death in people with an SMI diagnosis.

We note the prevailing definition of SMI that groups people with heterogeneous diagnoses, which include clinical and biological variability, 24 , 48 as a homogeneous population. While transdiagnostic approaches aim to produce scalable strategies, 7 this type of categorization likely explains the observed heterogeneity of effect sizes for the same treatment between different people with SMI who have the same diagnosis. 48 , 49 Analytic approaches based on big data, combined with recent scientific discoveries on the dynamic relationships between biopsychosocial, medical, and environmental determinants of SMI, afford the opportunity of personally tailored programs through precision medicine. Broadly defined, precision medicine is treatment that is tailored to each patient. Novel tools based on an individual’s biopsychosocial signature can enhance treatment decisions to produce the best possible outcome.

Scientific studies commonly group people with an SMI diagnosis as a homogeneous group; rather, the overlap in polygenic risk between bipolar disorder and schizophrenia for some patients, bipolar and major depressive disorder for others, and bipolar disorder and attention-deficit hyperactivity disorder for others may have implications for mental health treatment outcomes. 24 As such, empirically exploring outcomes by SMI type in fully powered samples may elucidate nuances to individual differences and best modifiable treatment practices for improved outcomes. 24 Researchers call for transdiagnostic approaches to better account for individual-level differences (eg, gender, cultural, and racial and ethnic identity) to lead to tailored and scalable strategies. To date, it is not known whether individually tailored approaches in comparison with transdiagnostic approaches lead to better outcomes and/or scalable strategies.

We make the following recommendations. First, people with SMI represent a heterogeneous group and the exploration of the Sequential, Multiple Assignment Randomized Trial (SMART) 50 research method is warranted. The SMART design is a useful technique for building stepped-care models and just-in-time adaptive interventions. 50 SMART trials allow for rerandomization based on an individual’s response. The SMART research method can allow for the field to progress more rapidly and perhaps reduce the time for effective interventions to be implemented. Second, use all data sources to inform personalized treatment options. Because of the nature of SMI, patients often have frequent encounters with the health care system that produce vast amounts of data. Accurate use of these data through predictive analytics is paramount to identifying beneficial treatment options before the trial of any interventions.

Health literacy is the degree to which an individual has the capacity to find, understand, and use health-related information to inform health-related decisions and behaviors. 51 Being health literate also includes being able to place the health of one’s family and community into context, understanding the factors that influence health, and being equipped to address them. Up to 66% of people with SMI have suboptimal health literacy, compared with 26% of those in the general population. 51 Low health literacy among people with an SMI diagnosis can affect engagement in interventions and increase the risk for hospitalization and other adverse health outcomes. 51 , 52 The potential low level of health literacy in people with SMI, as well as their increased risk of preventable chronic diseases associated with early mortality, call for advancing the health literacy of this group. 52 The WHO recommends focusing interventions on lower socioeconomic groups with lower health literacy. 23

We make the following recommendations. Universal design should be incorporated into paper-based or technology-based interventions, peer-delivered or clinician-delivered interventions, and dissemination strategies. Universal design is “the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.” 53 Universal design is incorporated to support the readability and learnability of health-related information. It is accessible to people with varying literacy levels and impairments in vision and hearing, including people with SMI. 54 This framework can improve usability and learnability (eg, by reducing memory and cognitive loads).

This lived experience–led research is a starting point to support interested parties in advancing the science of early mortality in people with SMI. The identified recommendations are a departure from what is known, and may offer a potentially viable path to extending the life span of people with SMI.

While we tried to account for various early mortality causes, not all causes of mortality were considered (eg, suicidality) as the roundtable was a 2-day event with select people with varying perspectives. However, this convening is an important step in including people with a lived experience in the conversation.

The recommendations presented herein offer a starting point for changing practice and highlighting lived experience–led research priorities as an option to move the field forward. If we recognize the value of disrupting our current research and make changes in how we design and conduct research, select interventionists, and structure our health care systems, medical education systems, and dissemination, we may impact the early mortality health disparity for persons with SMI.

Accepted for Publication: March 18, 2023.

Published: May 26, 2023. doi:10.1001/jamanetworkopen.2023.15479

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2023 Fortuna KL et al. JAMA Network Open .

Corresponding Author: Karen L. Fortuna, PhD, LICSW, The Geisel School of Medicine at Dartmouth, 70 Commercial St, Concord, NH 03301 ( [email protected] ).

Author Contributions: Dr Fortuna and Mr Walker had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Fortuna, Lebby, Johnson, MacDonald, Chefetz, Ferron, St George, Rossom, Kalisa, Mestrovic, Rotondi, Sica, Wright, Zisman-Ilani, Rhee, Daumit, Angel, Deegan, Butler, Brodey, Williams, Parks, Reimann, Wahrenberger, Morgan, Stafford, Carney, Gold, Storm, Walker.

Acquisition, analysis, or interpretation of data: Fortuna, Lebby, Geiger, Rossom, Kalisa, Mestrovic, Nicholson, Pringle, Sippel, Solesio, Gambee, Hill, Brundrett, Cather, Rhee, Angel, Manion, Deegan, Pitts, Bradford, Bright, Stafford, Bohm, Carney, Haragirimana, Gold.

Drafting of the manuscript: Fortuna, Lebby, Johnson, Ferron, St George, Kalisa, Mestrovic, Pringle, Sippel, Sica, Wright, Gambee, Hill, Cather, Angel, Butler, Pitts, Brodey, Williams, Reimann, Wahrenberger, Stafford, Bohm, Haragirimana, Gold, Walker.

Critical revision of the manuscript for important intellectual content: Fortuna, Geiger, MacDonald, Chefetz, St George, Rossom, Kalisa, Mestrovic, Nicholson, Pringle, Rotondi, Sippel, Sica, Solesio, Wright, Zisman-Ilani, Gambee, Hill, Brundrett, Rhee, Daumit, Angel, Manion, Deegan, Butler, Brodey, Williams, Parks, Morgan, Bradford, Bright, Stafford, Bohm, Carney, Storm, Walker.

Statistical analysis: Hill, Rhee, Bohm.

Obtained funding: Fortuna, Walker.

Administrative, technical, or material support: Fortuna, Lebby, Geiger, MacDonald, Chefetz, Rossom, Nicholson, Pringle, Rotondi, Sica, Wright, Rhee, Butler, Pitts, Williams, Reimann, Bradford, Stafford, Carney, Haragirimana, Gold, Walker.

Supervision: Fortuna, Johnson, Hill, Bohm, Walker.

Conflict of Interest Disclosures: Dr Fortuna reported offering consulting through Social Wellness LLC during the conduct of the study. Dr Daumit reported receiving grants from the National Institute of Mental Health (NIMH) during the conduct of the study; and grants from NIMH and the National Heart, Lung, and Blood Institute outside the submitted work. Ms Pitts reported receiving grants from Dartmouth College outside the submitted work. Dr Parks reported receiving personal fees from Boehringer-Ingelheim outside the submitted work. No other disclosures were reported.

Funding/Support: This project was funded through a Eugene Washington Patient-Centered Outcomes Research Institute Engagement Award EASCS-22925 (Dr Fortuna, Mr Walker).

Role of the Funder/Sponsor: The funding organization had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

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Gen Z, Social Media, and Mental Health

A generation raised on the internet is feeling its effects, navigating algorithms, and forging community.

By Shelby Crosier

Years of growing youth mental health concerns came to a head during the COVID-19 pandemic. In response, the American Academy of Pediatrics, American Academy of Child and Adolescent Psychiatry, and Children’s Hospital Association declared a National State of Emergency in Children’s Mental Health in 2021. However, a mental health crisis was beginning in young people long before the pandemic began.

“There was an inflection point starting between 2010 and 2012 where we started seeing spiking levels of everything,” says Benjamin Druss, MD , professor and Rosalynn Carter Chair in Mental Health in the Department of Health Policy and Management. “From reports of feeling lonely and left out, to depressive symptoms, to rising rates of diagnosed and treated anxiety and depression.”

Since 2011, the number of high school-aged youth (12- to 17-years-old) experiencing depressive symptoms—like sadness or hopelessness—considering suicide, and attempting suicide has gone up . In 2021, almost one third of high school students had experienced poor mental health within the past month. Concerningly, there are large disparities in this trend, with female, LGBTQ+, and  racial and ethnic minority youth being more likely to experience poor mental health.

The youth mental health crisis has, in many ways, fallen onto the shoulders of Generation Z. Defined by Pew Research Center as anyone born between 1997 and roughly 2012 (putting them between 12 and 27 years old), this generation has almost always been exposed to mobile devices, high speed Wi-Fi, social media, and an internet landscape that allows for constant connectedness—for better or for worse.

Rising Time Online, Rising Mental Health Concerns

Overall use of all social media sites has risen in the last decade , and youth are the most likely to use YouTube, TikTok, Snapchat, and Instagram. Members of Gen Z in particular are more likely than older generations to spend more time on social media daily , and a third of teenagers use at least one site almost constantly .

A growing body of research shows that this level of near-constant social media and internet use negatively impacts youth mental health. For example, one study showed that youth who spend over 3 hours each day on social media are at higher risk for mental health problems . According to a 2023 U.S. Surgeon General’s Advisory on social media and youth mental health , some of the major concerns that come with social media use are sleep loss, cyberbullying and harassment, body image issues and disordered eating behaviors, and depressive symptoms.

“A lot of youth say that social media is too much for them, but often this realization comes after significant negative experiences. They only see it once it’s really harmful to them,” says Dean M. Daniele Fallin, PhD . Some of this harm, according to the Surgeon General’s Advisory, could stem from exposure to harmful content, from influencers who encourage physical and social comparison, to violent and explicit material.

Algorithms and features built into digital platforms to maximize user engagement are another important factor in the mental health harms of social media. This fact is mentioned in the Surgeon General’s Advisory and emphasized by Janet Cummings, PhD , professor of health policy and management.

“These algorithms are developed to hold our attention and drive ad revenue,” says Cummings. “If what’s holding our attention online is something that creates or exacerbates loneliness, depression, or anxiety, those could get ramped up by increased engagement with these platforms.”

It is no wonder, then, that Gen Zers are more likely than their older counterparts to report feeling negative mental health effects from social media use.

“Social media is like a vector of contagion where things get magnified and amplified,” says Druss. “Once there is some bad feeling, it just tends to get bounced around and amplified in a way that it wouldn’t in real-life interactions.”

Finding Connection and Community Online

Social media can also have positive impacts on young people. It often provides an avenue for youth to find community and connection with others . This can be especially important for LGBTQ+ youth, who often use social media to connect with and support each other.

Some young people also find that online spaces positively affect their mental health by allowing them to be creative and build communities around their creative output. Sarah Timbie, an MPH student in global environmental health at Rollins and self-identified member of Gen Z, runs an online jewelry business and “does a lot of arts and crafts” in her free time.

“A huge positive impact [of social media] for me has been having an artistic community,” she shares. “Social media can be really helpful for people who are starting out in a new hobby or project. People can be super positive and encouraging about the growth of new artists, and they love giving tips.”

According to Druss, social media may also play a role in increasing conversations about mental health.

“Social media has helped facilitate more openness in discussing mental health problems among young people. That may help reduce stigma and get more people into treatment,” he says.

Where Do We Go from Here?

To improve youth mental health outcomes, especially as they relate to social media and internet usage, it is important to build a strong base of evidence about the impacts and potential solutions. However, there are currently several gaps in our knowledge.

“Many people have the sense that social media can be bad. And there has been some research, particularly around body image and girls that shows this to be true, but there is a lot of research that hasn’t been done,” says Fallin. “The [Surgeon General’s] report highlighted that some of the major social media companies have not been cooperative in sharing data with researchers, so it is very hard to do this research when you are limited by access. While we can work on that front to push for data access, we need also to think of other ways to get this kind of research done, because we simply don’t have a strong evidence base.”

There is also a need for research about what interventions may be the most effective in combatting the negative effects of social media. For Cummings, that means focusing on education and strategies to improve digital literacy.

“If this issue is going to be tackled, there needs to be an education component, and it needs to start young,” says Cummings. “We need an evidence base about how to do it well.”

Associated Topics:

• Mental Health
• Health Disparities
• Health Policy and Management
• Rollins News
• In the Media
• Rollins Experts

News Center

Children with skin diseases suffer stigma, bullying and depression, first large study to look at mental health problems in children with chronic skin conditions.

When someone walks briskly past David Artz, 16, on the sidewalk, he immediately thinks they are trying to get away from him. This is how his young mind works. He has a chronic skin disease that makes his skin red, scaly and rough. He has alopecia and is bald. 

David has grown up feeling stigmatized and teased–someone to be avoided because he might be “contagious.”

“It makes me sad and tearful when I think people are avoiding me because of how I look,” Artz said. “It’s hard to be different.” 

A new Northwestern Medicine study published in JAMA Dermatology shows Artz’s experience is common for children and teens with chronic skin diseases.

The majority of children and teens with chronic skin diseases such as acne, eczema, psoriasis, alopecia areata (hair loss) and vitiligo (pigment loss) feel stigmatized by peers for their condition and are sometimes bullied, the study reports. As a result, these children have a poor quality of life that includes suffering from depression, anxiety and impaired relationships with their peers. 

“These chronic skin conditions can be tremendously life-altering, including shaping psychosocial development,” said corresponding study author Amy Paller, MD, MS , the chair and Walter J. Hamlin Professor of Dermatology and a pediatric dermatologist at the Ann & Robert H. Lurie Children’s Hospital of Chicago.

Having a chronic skin disease during childhood is not uncommon. Eczema affects more than 10 percent of school-aged children. Among teenagers, acne affects more than 90 percent and psoriasis 1 percent.

This is the first large, multi-site study of the psychosocial impact of skin diseases in children and teens.

The study showed that 73 percent of 1,671 children had experienced a measurable stigma, which was strongly associated with poor quality of life.

The disease severity and visibility as rated by the child (age eight and older) was quite different from that of the doctor’s ratings, suggesting the need to ask the child about the disease and its impacts.

The investigators used a newly developed scoring tool for stigma in school-aged children (PROMIS Pediatric Stigma) and collaborated with 31 sites in the Pediatric Dermatology Research Alliance to measure the extent of stigma, depression, anxiety, and poor peer relationships — and their association with an impaired quality of life.

“Stigma, which is when something false and negative is attached to an individual, can have a profound effect on children’s and teens’ mental health,” Paller said. “For example, a child with dark scales on the body can be called ‘dirty’ by other kids or a child with a hair loss issue can be shunned by other children who fear the hair loss is contagious.”

That can lead the child to internalize these thoughts, so these become their own perceptions. The false beliefs can convince other people around them that it’s true when it’s not. These kids often feel embarrassed or ashamed.”

The majority of the bullying and teasing occurs in school, Paller said.

“These painful experiences can shape a child’s personality into adulthood and erode self-confidence,” Paller said. “Children may underestimate their abilities and worry about taking social risks. They don’t feel good enough and this shame may affect them lifelong.”

Kids also may not be able to concentrate because they are worried in school, affecting their performance, Paller said.

“The study results should encourage clinicians to aggressively treat skin disorders in children and consider referral to evaluation and counseling of the child and potentially family if mental health issues occur,” Paller said.

Doctors need to ask children and parents about the impact of these diseases — stigma, mental health, how it impacts life — not just note the observable clinical manifestations.

It’s important to refer families to dermatologists for optimal treatment to decrease severity and visibility, which contribute to psychosocial impacts.”

Paller also suggested parents ask teachers to discuss the skin disease in the classroom, so other children understand it better. “Try to diminish the stigma through education and talk about and recognize bullying,” Paller said.

Meantime, things are looking up for David this year. He has made a new friend, a buddy he goes fishing with after school. “I found a friend who doesn’t care about me having a skin issue. He sees me on the inside for who I am. These are the friends you need to be around.”

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Congresswoman Williams Introduces Legislation to Make Critical Investments in Endometriosis Research

WASHINGTON– Today, Congresswoman Nikema Williams (GA-05) led the introduction of the bipartisan Endometriosis CARE Act, which would deliver $50 million annually to advance endometriosis research and expand access to treatment. The legislation is co-sponsored by Congresswoman Lauren Underwood (IL-14) , Congresswoman Alma Adams (NC-12) and Congressional Endometriosis Caucus Co-Chair, Congresswoman Jenniffer González-Colón (PR-At Large). Despite the significant impact of endometriosis, chronic underfunding of women’s health research has resulted in a lack of innovation and understanding of the disease.

Endometriosis is a disease that affects more than 1 in 10 reproductive-aged women in the United States. It occurs when tissue, similar to the tissue that lines the inside of the uterus, grows outside the uterus, causing pain and interrupting the lives of millions of women daily. Currently, there is no known cause of endometriosis, and there is no cure. 

Congresswoman Nikema Williams (GA-05), co-chair of the Congressional Endometriosis Caucus said:

“The reintroduction of the Endometriosis CARE Act marks a renewed fight for funding to support millions of overlooked women, including myself, suffering from endometriosis. I have battled excruciating endometriosis pain since I was 14. The physical and financial burdens of endometriosis reflect ongoing disparities in women’s health research. The Endometriosis CARE Act will ease these burdens by investing in research to improve detection and treatment. We must act now for the estimated 6.5 million women in this country who suffer daily from endometriosis.”

Congresswoman Lauren Underwood (IL-14) said: 

“Endometriosis impacts every aspect of a woman’s life, including her physical and mental health, career, and relationships, yet there is a glaring lack of scientific innovation and public awareness, and overwhelming stigma. The Endometriosis CARE Act will make sure we’re making proper investments in research so we can better understand this disease, paving a path for better treatment options. It will also establish a national campaign to promote public awareness, and eliminate barriers to treatment for millions of women who are suffering. With this bill, we’re bringing the needs of women impacted by Endometriosis into light and making sure no woman has to suffer in silence.”

Congresswoman Alma Adams, Ph.D., co-founder and co-chair of the Black Maternal Health Caucus (NC-12) said: 

“In honor of Women’s Health Month, let us acknowledge that health issues that only affect women still matter and should be worthy of everyone’s time. Endometriosis affects one in ten reproductive-age women, causing them regular pain and complicating their pregnancies. I’m proud to co-lead the Endometriosis CARE Act with Congresswoman Nikema Williams to fund research, detection, and treatment for the millions of women who have suffered in silence. This issue deserves attention. Women who suffer from endometriosis can’t wait.”

Congresswoman Jenniffer González-Colón, co-chair of the Congressional Endometriosis Caucus (PR-At Large) said :

“Research indicates that over 5 million women in the States are living with endometriosis.  In Puerto Rico, some estimates show a prevalence of 4%. Women with endometriosis struggle with chronic pain and other problems that impact their daily lives and their families. The Endometriosis CARE Act seeks to mitigate some of the challenges associated with the condition by supporting data collection, research, access to treatment, and increasing information available for providers to better detect and provide care for endometriosis. I am proud to be a co-lead of this bill and will work with my colleague, Rep. Nikema Williams, to move it forward.”

Kathryn Schubert, President and CEO of the Society for Women’s Health Research said :

“Endometriosis is a public health crisis that is deserving of our attention. It affects more than 6.5 million women in the United States, often goes undiagnosed or misdiagnosed for years, and has significant social and economic implications. Tackling this condition requires a multi-faceted approach that includes dedicated research funding and improving our national education and awareness efforts. The Endometriosis CARE Act of 2024 will help bridge the gaps that currently exist for endometriosis and—most importantly—will improve health and quality of life outcomes for women across the country. We thank Representatives Williams, González-Colón, Underwood, and Adams for their leadership to improve endometriosis outcomes and urge Congress to swiftly pass this legislation.”

Lauren R. Kornegay, Founder & Executive Director of Endo Black, Inc. said :

“Since being diagnosed with endometriosis at 20 years old in March 2011, I’ve faced many challenges and understand the struggles this condition entails. The Endo Black, Inc. community and I wholeheartedly support the reintroduction of the Endometriosis CARE Act of 2024, championed by Representatives Lauren Underwood, Representatives Nikema Williams, and the Endometriosis Caucus. This vital legislation is a significant step forward in providing the necessary support for research, treatment, and increased awareness.”

Shannon Cohn, Film Director & Producer of ‘Below the Belt’ said :

“As someone who lives with endo, I know first hand the devastating impact of this disease. As a filmmaker, I’ve followed multiple women and their excruciating and traumatic journeys over many years. Millions of women are impacted, more research is necessary and the time is now. We have touched a nerve with our film, Below the Belt , and I am grateful to our leaders – Congresswoman Williams,  Congresswoman Adams and Congresswoman Underwood – for taking action to get this legislation across the finish line.”

Dr. Dan Martin, Scientific and Medical Director of the Endometriosis Foundation of America (EndoFound) said :

“Fifty million is an excellent start to investing in women’s health care. We need more funds for research and to eliminate barriers to patient access. Awareness and addressing demographic disparities are crucial. We welcome the renewed focus on the 10 to 20 million individuals with endometriosis including the undiagnosed group affected by inequalities in care, lack of education, and normalization of pain.”

The Endometriosis CARE Act would: 

• Invest $50 million annually for five years for endometriosis research through the National Institutes of Health;
• Commission a national study on the disparities in endometriosis prevalence, detection, treatments and outcomes by race, ethnicity, geography and insurance status;
• Establish a national campaign to promote public awareness of endometriosis;
• Identify barriers to accessing treatments for endometriosis symptoms, such as health care coverage, transportation, and health care professional shortages

The Endometriosis CARE Act is endorsed by the Society for Women’s Health Research, the Endometriosis Foundation of America, Endo Black Inc., Endo What? The American College of Obstetricians and Gynecologists and the March of Dimes. 

Click here for a one pager on the Endometriosis CARE Act.

Click here to watch a live stream of the press conference.

Contact: Amber English Coleman, [email protected]  

Congresswoman Nikema Williams proudly serves Georgia’s Fifth Congressional District on the exclusive Financial Services Committee. She is a champion of voting rights and builds on the Fifth District’s legacy as the cradle of the civil rights movement as co-chair of the Congressional Voting Rights Caucus. Congresswoman Williams is committed to closing the racial wealth gap and ensuring the promise of America for all–regardless of your ZIP code or bank account.

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