mental health stigma essay

• Stigma, Prejudice and Discrimination Against People with Mental Illness

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More than half of people with mental illness don't receive help for their disorders. Often, people avoid or delay seeking treatment due to concerns about being treated differently or fears of losing their jobs and livelihood. That's because stigma, prejudice and discrimination against people with mental illness are still very much a problem.

Stigma, prejudice and discrimination against people with mental illness can be subtle or obvious—but no matter the magnitude, they can lead to harm. People with mental illness are marginalized and discriminated against in various ways, but understanding what that looks like and how to address and eradicate it can help.

The Facts on Stigma, Prejudice and Discrimination

Stigma often comes from lack of understanding or fear. Inaccurate or misleading media representations of mental illness contribute to both those factors. A review of studies on stigma shows that while the public may accept the medical or genetic nature of a mental health disorder and the need for treatment, many people still have a negative view of those with mental illness.

Researchers identify different types of stigma: (See chart below.)

• Public stigma involves the negative or discriminatory attitudes that others may have about mental illness.
• Self-stigma refers to the negative attitudes, including internalized shame, that people with mental illness may have about their own condition.
• Structural stigma  is more systemic, involving policies of government and private organizations that intentionally or unintentionally limit opportunities for people with mental illness. Examples include lower funding for mental illness research or fewer mental health services relative to other health care.

Stigma not only directly affects individuals with mental illness but also the loved ones who support them, often including their family members.

Stigma around mental illness especially an issue in some diverse racial and ethnic communities and it can be a major barrier to people from those cultures accessing mental health services. For example, in some Asian cultures, seeking professional help for mental illness may be counter to cultural values of strong family, emotional restraint and avoiding shame. Among some groups, including the African American community's, distrust of the mental healthcare system can also be a barrier to seeking help. (See more on mental health in Diverse Populations .)

Types of Stigma

Source: Adapted from Corrigan, et al., 2014.

Media representations of people with mental illness can influence perceptions and stigma, and they have often been negative, inaccurate or violent representations. A study published by Scarf, et. al. in 2020 looked at a recent example, the popular film Joker (2019), which portrays the lead character as a person with mental illness who becomes extremely violent. The study found that viewing the film "was associated with higher levels of prejudice toward those with mental illness." Additionally, the authors suggest, " Joker may exacerbate self-stigma for those with a mental illness, leading to delays in help seeking."

The stigma of mental illness is universal. A 2016 report on stigma concluded "there is no country, society or culture where people with mental illness have the same societal value as people without mental illness."

Harmful Effects of Stigma and Discrimination

Stigma and discrimination can contribute to worsening symptoms and reduced likelihood of getting treatment. A recent extensive review of research found that self-stigma leads to negative effects on recovery among people diagnosed with severe mental illnesses. Effects can include:

• reduced hope
• lower self-esteem
• increased psychiatric symptoms
• difficulties with social relationships
• reduced likelihood of staying with treatment
• more difficulties at work

A 2017 study by Oexle et al  involving more than 200 individuals with mental illness over a period of two years found that greater self-stigma was associated with poorer recovery from mental illness after one and two years.

An editorial in the Lancet notes that the impacts of stigma are pervasive, affecting political enthusiasm, charitable fundraising and availability, support for local services and underfunding of research for mental health relative to other health conditions.

Some of the other harmful effects of stigma can include:

• Reluctance to seek help or treatment and reduced likelihood of staying with treatment.
• Social isolation.
• Lack of understanding by family, friends, coworkers, or others.
• Fewer opportunities for work, school or social activities or trouble finding housing.
• Bullying, physical violence or harassment.
• Health insurance that doesn't adequately cover your mental illness treatment.
• The belief that you'll never succeed at certain challenges or that you can't improve your situation.

Source: Adapted from Mayo Clinic 2017

Stigma Can Also Impact Family and Friends

Family members and friends, who often provide essential help and support for people with mental illness, can also experience stigma. They may internalize stigma and blame themselves, or they may fear that people will blame them for causing a loved one’s illness or reject the family socially. This stigma can lead to reduced emotional support, social isolation, and reluctance to seek care for their relative. (Yanos, 2023; Mclean, 2023)

Stigma in Diverse Communities

Stigma around mental illness is especially an issue in some diverse racial and ethnic communities, and it can be a major barrier to people from those cultures accessing mental health services. For more information, please see Mental Health Disparities: Diverse Populations.

Stigma in the Workplace

A 2022 national poll from the American Psychiatric Association (APA) found that mental health stigma is still a major challenge in the workplace. About half (48%) of workers say they can discuss mental health openly and honestly with their supervisor, down from 56% in 2021 and 62% in 2020. Half (52%) also say they feel comfortable using mental health services with their current employer, compared to 64% in 2021 and 67% in 2020. In a more positive trend, fewer adults are worried about retaliation if they take time off or seek care for their mental health. About one in three (36%) worried about retaliation if they took time off, compared to 48% in 2021 and 52% in 2020. Less than one-third (31%) were worried about retaliation for seeking care, compared to 43% in 2021 and 2020. (APA, 2022)

Reducing Stigma

Public health approaches.

Many years of research on anti-stigma interventions has found that successful interventions (Yanos, 2023):

• Include contact (in person, but video can also be a feature if done right).
• Focus on a range of disorders, not just depression or mental illness broadly.
• Involve participation of people with “lived experience.”
• Target groups that have the most interaction or where lack of help-seeking is most problematic (e.g., young people, undocumented communities, military communities).
• Are tailored to be credible to specific language and cultural signifiers of the target group.
• Last several years in order to be effective.

Substantial research shows that knowing or having contact with someone with mental illness is one of the best ways to reduce stigma. Individuals speaking out and sharing their stories can have a positive impact. When we know someone with mental illness, it becomes less scary and more real and relatable.

Teens are searching for health information online and mental health issues are among the top searches, according to a national survey from Hope Lab (Hope Lab, 2021). About four in 10 teens said they have looked for people with similar health concerns. Many celebrities, such as Demi Lovato, Dwayne "The Rock" Johnson, Michael Phelps, Taraji P. Henson and Lady Gaga have publicly shared their stories of mental health challenges and brought the discussion much more into the general media and everyday conversation. Young people are looking for information and for these personal stories online.

Recent studies have also shown the effectiveness of brief videos in reducing stigma. One study tracked more than 700 students across two years in a randomized controlled trial and found that watching videos of people sharing their personal experiences and videos with information on mental health improved students' mental health care access (da Conceição, et al 2023). The researchers found that the intervention was particularly effective for those in need, enabling them to recognize their need for care and behave accordingly. Another study found that a video featuring an actor sharing a story was as effective as a person with lived experience. (Amsalem, et al 2023).

Social marketing campaigns can also be effective. For example, a research study looked at the effectiveness of an anti-stigma social marketing campaign in California and found that the campaign increased service use by helping people better understand symptoms of distress and increasing awareness that help is available. (Collins, et al 2019). The researchers suggest that widespread exposure to the mental health campaign could significantly increase access to treatment.

Individual Actions to Reduce Stigma

The National Alliance on Mental Illness (NAMI) offers some suggestions about what we can do as individuals to help reduce the stigma of mental illness:

• Talk openly about mental health, such as sharing on social media.
• Educate yourself and others – respond to misperceptions or negative comments by sharing facts and experiences.
• Be conscious of language – remind people that words matter.
• Encourage equality between physical and mental illness – draw comparisons to how they would treat someone with cancer or diabetes.
• Show compassion for those with mental illness.
• Be honest about treatment – normalize mental health treatment, just like other health care treatment.
• Let the media know when they are using stigmatizing language presenting stories of mental illness in a stigmatizing way.
• Choose empowerment over shame – "I fight stigma by choosing to live an empowered life. To me, that means owning my life and my story and refusing to allow others to dictate how I view myself or how I feel about myself." – Val Fletcher.

Employers who are leading efforts to address stigma offer some suggestions (CWMH):

• Tailor programs/approaches to your company culture and existing strengths.
• Mention your commitment to leading a behaviorally healthy workplace every time you mention the company's commitment to its overall culture of health, attracting and retaining the best talent, and valuing its employees, etc.
• Train leaders to identify emotional distress and make referrals and to responding promptly and constructively to behavioral performance issues.
• Be welcoming of the need for accommodations. Train managers to respond appropriately

Organizations and Campaigns

Across the country numerous organizations and campaigns focus on addressing the issue of mental health stigma and discrimination. A few examples are highlighted below:

How So We Stop Stigma? Conversation

Try these simple tips for talking.

• "Thanks for opening up to me."
• "Is there anything I can do to help?"
• "I'm sorry to hear that. It must be tough."
• "I'm here for you when you need me."
• "I can't imagine what you're going through."
• "People do get better."
• "Oh man, that sucks."
• "Can I drive you to an appointment?"
• "How are you feeling today?"
• "I love you."

Don't Say

• "It could be worse."
• "Just deal with it."
• "Snap out of it."
• "Everyone feels that way sometimes."
• "You may have brought this on yourself."
• "We've all been there."
• "You've got to pull yourself together."
• "Maybe try thinking happier thoughts."

Source: MakeItOK.org

  References

• Amsalem, D. et al. 2023. Stigma Reduction Via Brief Video Interventions: Comparing Presentations by an Actor Versus a Person With Lived Experience. Psychiatric Services. https://doi.org/10.1176/appi.ps.20230215
• APA News Release: Employees Say Workplaces Are Offering Fewer Mental Health Services in 2022, According to APA Poll. May 22, 2022.
• Barnett, D. 2023. ‘Tis the Season: Opportune Time to Help Reduce Stigma of Substance Use Disorders Psychiatric News. Nov. 27, 2023. https://doi.org/10.1176/appi.pn.2023.12.12.35
• Center for Workplace Mental Health. Working Well Toolkit . 2016.
• Collins, R.L., et al. Social Marketing of Mental Health Treatment: California's Mental Illness Stigma Reduction Campaign . Am J Public Health . 2019 June; 109(Suppl 3): S228–S235.
• Corrigan, Pw, Druss, BG, Perlick, DA. The Impact of Mental Illness Stigma on Seeking and Participating in Mental Health Care . Psychological Science in The Public Interest . 2014, 15(2);37-70.
• da Conceição, V., Mesquita, E., & Gusmão, R. (2023). Effects of a stigma reduction intervention on help-seeking behaviors in university students: A 2019-2021 randomized controlled trial . Psychiatry research, 331, 115673. Advance online publication. https://doi.org/10.1016/j.psychres.2023.115673
• Forde, K. 2020. By Sharing Their Own Struggles, Celebs Help Teens Tear Down Mental Health Stigma .
• Greenstein, L. 9 Ways To Fight Mental Health Stigma . NAMI blog, Oct. 11, 2017.
• Hope Lab, Common Sense, and California HealthCare Foundation. 2021. Coping With Covid-19: How Young People Use Digital Media To Manage Their Mental Health.
• Mayo Clinic. Mental health: Overcoming the stigma of mental illness . 2017.
• McLean/Mass General Brigham, 2023. Let’s Face It, No One Wants To Talk About Mental Health
• Oexle N, Müller M, Kawohl W, et al. Self-stigma as a barrier to recovery: a longitudinal study . European Archives of Psychiatry and Clinical Neuroscience . October 2017. doi: 10.1007/s00406-017-0773-2.
• Pescosolido, BA. The public stigma of mental illness: what do we think; what do we know; what can we prove? J Health Soc Behav . 2013 Mar;54(1):1-21. doi: 10.1177/0022146512471197.
• Scarf, D., et al. Association of Viewing the Films Joker or Terminator: Dark Fate With Prejudice Toward Individuals With Mental Illness . JAMA Network Open . April 24, 2020.
• Yanos, P., Amsalem, D., Dixon, L. 2023. Brief video interventions to reduce self-, public, and affiliate stigma among/toward young individuals with psychosis. Presentation at APA 2023 Mental Health Services Conference

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Home — Essay Samples — Nursing & Health — Mental Health — Breaking the Stigma of Mental Health: Awareness and Acceptance

Breaking The Stigma of Mental Health: Awareness and Acceptance

• Categories: Mental Health

About this sample

Words: 761 |

Published: Sep 12, 2023

Words: 761 | Pages: 2 | 4 min read

Table of contents

The complex nature of mental health stigma, the role of awareness in dismantling stigma, the transformative power of acceptance, impact on prevention, treatment, and recovery.

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Mental Health Stigma

Reviewed by Psychology Today Staff

Mental health stigma refers to negative beliefs people may hold about those with mental illness, which can lead to stereotypes, prejudice, and discrimination . Public awareness and literacy have increased substantially over the years, yet some entrenched stigmas persist today.

• What Does Mental Health Stigma Mean?
• How to Combat Mental Health Stigma

Mental health stigma involves marking and discrediting people due to their differences, which can instill feelings of shame or worthlessness. Those with mental health conditions may be labeled, stereotyped, or discriminated against as a result. For example, someone with a mental health condition may be called “crazy” or “dangerous”. Another may be denied a job due to their diagnosis.

Different models of stigma propose different structures for the construct. One views stigma as a combination of three components: cognitive (ignorant beliefs), emotional (negative feelings of dislike or fear ), and behavior (ostracization and oppression). Another defines stigma by the process through which it arises. This involves distinguishing and labeling differences, linking labels to negative stereotypes, placing labeled people in distinct categories, decreasing their status, and limiting access to social, economic, and political power, which perpetuates rejection and discrimination .

Mental health stigma has been categorized into three types. Public stigma refers to the negative attitudes society has toward people with mental illness. Self-stigma or internalized stigma is when an individual with mental illness internalizes these negative attitudes. Institutional stigma is systemic and includes laws or policies from the government or other organizations that, intentionally or not, discriminate against those with mental illness. An example of institutional stigma is the insurance coverage disparities between psychiatric treatment and medical treatment.

Personally accepting and agreeing with stereotypes and prejudices held against oneself is called internalized stigma or self-stigma. Some believe that it results in part from the stress of experiencing stigma. Internalized stigma is linked to emotional distress, feelings of low self-worth, and loss of self-efficacy . There can be practical ramifications as well; for example, internalized stigma may stop someone from applying for a job because they don’t believe they are capable.

What people stigmatize varies from culture to culture; culture informs how people perceive and explain differences. America tends to value individualism and independence, which some argue perpetuates stigma by placing responsibility or “blame” solely on the individual. People in many other parts of the world don’t blame individuals for their differences or their struggles. They may blame God, the family, a malevolent spirit, karma, or the stress of war, poverty, and other sociopolitical forces. 

Stigma forces people to not only struggle with their disorder but to cope with prejudice and rejection. This can lead people to develop feelings of self-blame and low self-esteem, and prevent them from seeking treatment or social and professional opportunities. A systematic review demonstrates these repercussions, finding that mental health stigma negatively affects employment, income, and public views about resource allocation and healthcare costs. 

People with mental disorders have been blamed, vilified, and ostracized throughout human history. While attitudes about mental illness, and treatment for those conditions, have improved dramatically over the last century, stigma has not disappeared. Yet individuals, organizations, and societies are continuing to address mental health stigma and its consequences.

The evolution of stigma over time is complex. Today there is greater awareness, information, and literacy than in years prior. Yet that doesn’t always translate into attitudes and beliefs. For example, a recent study that assessed trends in the stigma of mental illness in the U.S. between 1996 and 2018 found a substantial decrease in stigma for major depression but not for schizophrenia or alcohol dependence. The study also reported a substantial increase in acceptance of biomedical causes of mental illness, but that acceptance didn’t lead to less social rejection. While there has been progress, it’s far from uniform or all-encompassing.

Research suggests that awareness and literacy, though important, are not always effective at reducing stigma. One experience that does seem to reduce stigma is interacting with people with mental health conditions. Proximity to and relationships with people with mental illness, and being open about those relationships with others, can shift attitudes. In the absence of live interactions, depictions in television and movies can be helpful substitutes. Similarly, celebrity disclosures can be beneficial as well. 

There are several actions individuals can take to fight stigma in their lives and their communities. They can educate themselves by reading about mental health, stereotypes, and myths. They can research the factors that contribute to stigma such as culture, stress, and poverty. They can explore any self-stigma and if so practice self-compassion and empowerment. And they can help others by volunteering or advocating on behalf of those with mental health conditions. 

People with mental health conditions can respond to stigma by continuing to seek treatment, even when it feels difficult. They can join a support group, share their story, and reframe experiences of stigma. Speaking to a mental health professional can also help people process painful experiences, develop coping skills, and build resilience . 

Yes. A systematic review found that self-stigma interventions are generally effective in reducing internalized stigma, and they take the form of group-based programs that involve psychoeducation, cognitive behavioral theory, and disclosure-focused exercises. Two examples of treatments that target internalized stigma are narrative enhancement and cognitive therapy and coming out proud. 

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Mental health: overcoming the stigma of mental illness.

False beliefs about mental illness can cause significant problems. Learn what you can do about stigma.

Stigma is when someone views you in a negative way because you have a distinguishing characteristic or personal trait that's thought to be, or actually is, a disadvantage (a negative stereotype). Unfortunately, negative attitudes and beliefs toward people who have a mental health condition are common.

Stigma can lead to discrimination. Discrimination may be obvious and direct, such as someone making a negative remark about your mental illness or your treatment. Or it may be unintentional or subtle, such as someone avoiding you because the person assumes you could be unstable, violent or dangerous due to your mental illness. You may even judge yourself.

Some of the harmful effects of stigma can include:

• Reluctance to seek help or treatment
• Lack of understanding by family, friends, co-workers or others
• Fewer opportunities for work, school or social activities or trouble finding housing
• Bullying, physical violence or harassment
• Health insurance that doesn't adequately cover your mental illness treatment
• The belief that you'll never succeed at certain challenges or that you can't improve your situation

Steps to cope with stigma

Here are some ways you can deal with stigma:

• Get treatment. You may be reluctant to admit you need treatment. Don't let the fear of being labeled with a mental illness prevent you from seeking help. Treatment can provide relief by identifying what's wrong and reducing symptoms that interfere with your work and personal life.
• Don't let stigma create self-doubt and shame. Stigma doesn't just come from others. You may mistakenly believe that your condition is a sign of personal weakness or that you should be able to control it without help. Seeking counseling, educating yourself about your condition and connecting with others who have mental illness can help you gain self-esteem and overcome destructive self-judgment.
• Don't isolate yourself. If you have a mental illness, you may be reluctant to tell anyone about it. Your family, friends, clergy or members of your community can offer you support if they know about your mental illness. Reach out to people you trust for the compassion, support and understanding you need.
• Don't equate yourself with your illness. You are not an illness. So instead of saying "I'm bipolar," say "I have bipolar disorder." Instead of calling yourself "a schizophrenic," say "I have schizophrenia."
• Join a support group. Some local and national groups, such as the National Alliance on Mental Illness (NAMI), offer local programs and internet resources that help reduce stigma by educating people who have mental illness, their families and the general public. Some state and federal agencies and programs, such as those that focus on vocational rehabilitation and the Department of Veterans Affairs (VA), offer support for people with mental illness.
• Get help at school. If you or your child has a mental illness that affects learning, find out what plans and programs might help. Discrimination against students because of a mental illness is against the law, and educators at primary, secondary and college levels are required to accommodate students as best they can. Talk to teachers, professors or administrators about the best approach and resources. If a teacher doesn't know about a student's disability, it can lead to discrimination, barriers to learning and poor grades.
• Speak out against stigma. Consider expressing your opinions at events, in letters to the editor or on the internet. It can help instill courage in others facing similar challenges and educate the public about mental illness.

Others' judgments almost always stem from a lack of understanding rather than information based on facts. Learning to accept your condition and recognize what you need to do to treat it, seeking support, and helping educate others can make a big difference.

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• StigmaFree me. National Alliance on Mental Illness. https://www.nami.org/Get-Involved/Take-the-stigmafree-Pledge/StigmaFree-Me. Accessed April 25, 2017.
• What is stigma? Why is it a problem? National Alliance on Mental Illness. https://www.nami.org/stigmafree. Accessed April 25, 2017.
• Stigma and mental illness. Centers for Disease Control and Prevention. https://www.cdc.gov/mentalhealth/basics/stigma-illness.htm. Accessed April 25, 2017.
• Sickel AE, et al. Mental health stigma: Impact on mental health treatment attitudes and physical health. Journal of Health Psychology. http://journals.sagepub.com/doi/pdf/10.1177/1359105316681430. Accessed April 25, 2017.
• Americans with Disabilities Act and mental illness. Womenshealth.gov. https://www.womenshealth.gov/mental-health/your-rights/americans-disability-act.html. Accessed April 25, 2017.
• Picco L, et al. Internalized stigma among psychiatric outpatients: Associations with quality of life, functioning, hope and self-esteem. Psychiatric Research. 2016;246:500.
• The civil rights of students with hidden disabilities under Section 504 of the Rehabilitation Act of 1973. U.S. Department of Education. https://www2.ed.gov/about/offices/list/ocr/docs/hq5269.html. Accessed May 2, 2017.
• Wong EC, et al. Effects of stigma and discrimination reduction trainings conducted under the California Mental Health Services Authority. Rand Health Quarterly. 2016;5:9.

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Speaking out on the stigma of mental health

Persons with psychosocial disabilities frequently face stigma, discrimination and rights violations, including within and from the medical community, which reflects broader societal stigma. One doctor relates his personal experience here and how he uses it today to challenge stigma. 

When Dr Ahmed Hankir first experienced extreme psychological distress as a medical student in the United Kingdom in 2006, he delayed seeking help due to the shame and stigma of having a mental health condition.

Exacerbating his distress was the added stigma of being a man of colour and a Muslim, which, with his mental health condition, made up what he calls a “triple whammy” of stigmas that he “internalized”. It led to him feeling “dehumanised”. 

The stress and strains of working low-paid jobs to support himself as a student, and an outbreak of war in Lebanon, the country of his roots and where his parents were living, made matters worse. Meanwhile, he was living in a dilapidated house in one of the most dangerous areas of Manchester.

The intersectionality of these stressors – which added a “layer upon layer” – are often overlooked at the level of the individual, he said. Racism might be passed over. “It might be there is some gaslighting... so, you know, you are not a victim of racism.”

Hankir, who was born in Belfast when his parents fled the 1982 war in Lebanon, but later returned to Lebanon as a teenager, also said he had an identity crisis. “We want to be accepted, but I wasn't treated as British in the UK and I wasn't treated as Lebanese in Lebanon.” 

Stigma “rampant” in the medical profession 

Yet it was in his own profession that he felt the stigma of mental health most deeply, which led to the delay in seeking help. He was “ridiculed” by fellow medical students and ostracised by his closest companions. When he sought help from the person in charge of student support, a person who had the power to have him removed from his course, he was “psychologically tortured”. He was forced to temporarily interrupt his studies. 

“Stigma is rampant in the medical profession. Unless we address it, it will continue to destroy and devastate the lives of many. We’re just scratching the surface now - I don’t know an expert in stigma. There is a lot of ignorance on how to deal with mental health,” he said. 

Not only is there ignorance, but there is also arrogance from health providers, some of whom look down on people with mental health conditions and psychosocial disabilities, he said. 

“It takes strength to accept that you might be a source of stigma. What we need is humility. But I’ve met inspirational, humble doctors who have contributed to my recovery and continue to contribute to my resilience.”

“My lived experience is my superpower”

Today, Hankir is a psychiatrist and he draws from his past: “My lived experience is my superpower. It’s a strength, not a weakness. It makes me more insightful, empathetic and driven. 

“When I'm working in frontline psychiatry and I'm providing care for a person in a mental health crisis at 2am, I often draw on my personal expertise more than my professional expertise especially when attempting to develop a rapport and 'therapeutic alliance' with the person receiving care from me.”

He believes that many of his peers have also experienced psychological distress, but have chosen to remain silent about it. “I’m honest and open about my experience of living with a mental health condition. More people are talking about it. We normalize living with mental health conditions.”

Ahmed has won multiple awards for his “Wounded Healer” presentation, including from WHO in 2022. Photo credit: WHO/ Michelle Funk 

Delivering the “Wounded Healer” presentation around the world

Hankir is now renowned for his “ Wounded Healer ” presentation, which aims to debunk myths and humanize people living with mental health conditions through blending performing arts and storytelling with psychiatry.

The Wounded Healer also traces Hankir’s recovery journey. “Speaking out on stigma helps to reduce it,” he explained. More than 100,000 people in 20 countries have heard him speak. In recognition of his work, Hankir received the 2022 World Health Organization Director-General Award for Global Health, among other awards.

He welcomes WHO’s Quality Rights Initiative, which takes an approach to mental health  grounded on a human rights framework that empowers, dignifies and humanizes people with mental health conditions.

“Our human rights are being violated, regardless of time and place – high income country, low income country. Too many people feel like they have been brutalized,” he said. “When care is available, there are also concerns about the quality of care.”

He continues to face negativity from some psychiatrists, some of whom are “suspicious” of his success. “They accuse me of fabricating having a severe mental health condition. It is as if people living with severe mental health conditions can’t recover or excel, and can only ever think of survival. I was miserable for many years. But now I am not just surviving, I’m thriving,” he laughed. 

A version of this story first appeared in the WHO Global report on health equity for persons with disabilities.  

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

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Annual Review of Sociology

Volume 41, 2015, review article, the stigma complex.

• Bernice A. Pescosolido 1 , and Jack K. Martin
• View Affiliations Hide Affiliations Affiliations: Department of Sociology, Indiana University, Bloomington, Indiana 47405-7103; email: [email protected]
• Vol. 41:87-116 (Volume publication date August 2015) https://doi.org/10.1146/annurev-soc-071312-145702
• First published as a Review in Advance on May 04, 2015
• © Annual Reviews

Since the beginning of the twenty-first century, research on stigma has continued. Building on conceptual and empirical work, the recent period clarifies new types of stigmas, expansion of measures, identification of new directions, and increasingly complex levels. Standard beliefs have been challenged, the relationship between stigma research and public debates reconsidered, and new scientific foundations for policy and programs suggested. We begin with a summary of the most recent Annual Review articles on stigma, which reminded sociologists of conceptual tools, informed them of developments from academic neighbors, and claimed findings from the early period of “resurgence.” Continued (even accelerated) progress has also revealed a central problem. Terms and measures are often used interchangeably, leading to confusion and decreasing accumulated knowledge. Drawing from this work but focusing on the past 14 years of stigma research (including mental illness, sexual orientation, HIV/AIDS, and race/ethnicity), we provide a theoretical architecture of concepts (e.g., prejudice, experienced/received discrimination), drawn together through a stigma process (i.e., stigmatization), based on four theoretical premises. Many characteristics of the mark (e.g., discredited, concealable) and variants (i.e., stigma types and targets) become the focus of increasingly specific and multidimensional definitions. Drawing from complex and systems science, we propose a stigma complex, a system of interrelated, heterogeneous parts bringing together insights across disciplines to provide a more realistic and complicated sense of the challenge facing research and change efforts. The Framework Integrating Normative Influences on Stigma (FINIS) offers a multilevel approach that can be tailored to stigmatized statuses. Finally, we outline challenges for the next phase of stigma research, with the goal of continuing scientific activity that enhances our understanding of stigma and builds the scientific foundation for efforts to reduce intolerance.

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• Published: 22 July 2021

Effectiveness of arts interventions to reduce mental-health-related stigma among youth: a systematic review and meta-analysis

• Shivani Mathur Gaiha   ORCID: orcid.org/0000-0002-0636-8936 1 , 2 , 3 ,
• Tatiana Taylor Salisbury   ORCID: orcid.org/0000-0002-8249-3886 4 ,
• Shamaila Usmani 5 ,
• Mirja Koschorke 4 ,
• Usha Raman   ORCID: orcid.org/0000-0002-9023-9853 6 &
• Mark Petticrew 2  

BMC Psychiatry volume  21 , Article number:  364 ( 2021 ) Cite this article

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Educational interventions engage youth using visual, literary and performing arts to combat stigma associated with mental health problems. However, it remains unknown whether arts interventions are effective in reducing mental-health-related stigma among youth and if so, then which specific art forms, duration and stigma-related components in content are successful.

We searched 13 databases, including PubMed, Medline, Global Health, EMBASE, ADOLEC, Social Policy and Practice, Database of Promoting Health Effectiveness Reviews (DoPHER), Trials Register of Promoting Health Interventions (TRoPHI), EPPI-Centre database of health promotion research (Bibliomap), Web of Science, PsycINFO, Cochrane and Scopus for studies involving arts interventions aimed at reducing any or all components of mental-health-related stigma among youth (10–24-year-olds). Risk of bias was assessed using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool for Quantitative Studies. Data were extracted into tables and analysed using RevMan 5.3.5.

Fifty-seven studies met our inclusion criteria ( n  = 41,621). Interventions using multiple art forms are effective in improving behaviour towards people with mental health problems to a small effect (effect size = 0.28, 95%CI 0.08–0.48; p  = 0.007) No studies reported negative outcomes or unintended harms. Among studies using specific art forms, we observed high heterogeneity among intervention studies using theatre, multiple art forms, film and role play. Data in this review are inconclusive about the use of single versus multiple sessions and whether including all stigma components of knowledge, attitude and behaviour as intervention content are more effective relative to studies focused on these stigma components, individually. Common challenges faced by school-based arts interventions included lack of buy-in from school administrators and low engagement. No studies were reported from low- and middle-income countries.

Arts interventions are effective in reducing mental-health-related stigma to a small effect. Interventions that employ multiple art forms together compared to studies employing film, theatre or role play are likely more effective in reducing mental-health-related stigma.

Peer Review reports

Stigma or a negative disposition towards mental ill-health and people with mental health problems is a widely recognized barrier in help-seeking for mental health problems [ 1 ]. Public stigma, consists of ‘problems of knowledge (ignorance), problems of attitude (prejudice), and problems of behaviour (discrimination).’ [ 2 ] Such stigma especially inhibits help-seeking by youth due to their inability to recognize mental health problems, difficulty in talking about their problems for fear of peer pressure and a negative perception of people with mental health problems as dependent, which clashes with their desire to be self-reliant [ 3 ]. Thus, although an estimated 10–20% of youth aged 10–24 years suffer from mental health problems, [ 4 ] 63–86% of all mental health problems that require a diagnosis generally go undetected [ 5 ]. Therefore, interventions targeting non-clinical youth groups to reduce mental-health-related stigma may promote youth help-seeking behaviour and ultimately address unattended mental health needs.

Most anti-stigma interventions and/or campaigns have been conceptualized using knowledge-attitude-behavior paradigm [ 6 ]. Knowledge is defined as information an individual perceives about mental health as a function of memory and stereotyping (related to, for e.g., treatment efficacy, symptom recognition, help-seeking, and employment), attitude is defined as perceptions or views towards people with mental disorders or about mental disorders (related to negative attitudes, for e.g., desiring social control and social distance), and behavior as intended or actual discriminatory actions towards people with mental health problems (related to, for e.g. social exclusion, which may contribute to status loss or human rights violations of someone living with a mental health problem) [ 2 , 7 , 8 , 9 ]. Further, effective strategies in anti-stigma interventions include education, social contact (interaction with a person who suffers from a mental health problem) and protest [ 10 ]. In addition, effective interventions are often locally tailored, perceived as credible and of a longer duration [ 11 ]. In school-based settings, experiential learning (learning through reflection on doing), empathy building, interactive and prolonged exposure to anti-stigma content is likely effective [ 12 , 13 ]. Overall, systematic reviews of anti-stigma intervention studies report that in the long term and among youth, educational interventions are likely more effective than social contact interventions in reducing stigma with moderate effect [ 14 , 15 , 16 ]. Among the approaches used, educational interventions have employed a variety of visual, literary and performing arts to improve relatability, interactivity and engagement.

Art is broadly defined as any means for expression of individual and social values, through concrete and artistic activities and processes [ 17 ]. Further per Dewey’s conceptualisation of art, arts interventions may communicate moral purpose or education [ 18 ] or explain experiences of one’s daily emotional and rational world [ 19 ]. The evidence for arts-based educational interventions is generally limited, despite its documented emotional and visceral effects [ 20 ]. Despite multiple, relevant systematic reviews, uncertainties remain regarding the overall effectiveness of arts-based interventions in reducing mental-health-related stigma and relative effectiveness of interventions employing different art forms, varying durations and conceptualizations of stigma. A review of 22 studies evaluating the impact of mass media interventions including film, photographs, radio and comics attributed reduced prejudice (attitude) for mental health problems to creative and artistic content [ 21 ]. The majority (86%) of studies in this review focused on student populations. Other reviews of studies among 11–18 year olds using creative activities such as music, dance, singing, drama and visual arts [ 22 ] and performing arts, [ 23 ] indicate that arts-based interventions improve knowledge, another component of mental-health-related stigma. As some reviews are focused on educational versus social contact-based interventions, [ 14 , 15 , 16 ] they do not focus on the distinguishing role of arts-based elements in achieving impact nor suggest the relative impact from using role play, theatre, film compared to other art forms.

Previous studies show that arts-based interventions have the potential to reduce mental-health-related stigma as they have improved individual components of such stigma, i.e. attitude and knowledge. However, little is known about the effectiveness of arts-based interventions in reducing overall mental-health-related stigma among youth, and whether interventions using specific art forms, duration and content on all stigma components of knowledge, attitude and behavior are more effective in reducing such stigma compared to individual components. The objectives of this study are to: (a) assess the effectiveness of arts-based interventions to reduce stigma associated with mental health among youth; (b) assess effectiveness of arts-based interventions by their duration; (c) assess whether a comprehensive approach to stigma is more effective than a focus on individual stigma components; and (d) identify barriers and facilitators in implementation of arts-based interventions and the role of implementation in building participant engagement and ultimately influencing how effective such interventions are in reducing stigma.

Eligibility criteria

Studies will be included in the review if they contain:

Interventions using any form of art or creative expression or storytelling as a key method were included. Such art forms include (1) using words in literary art (in stories, poetry, creative writing, essays and other forms), and through creation of physical objects and experiences, through (2) visual art (drawing, painting, sculpture, crafts, pottery, installation), and (3) performing art (theatre or dramatic improvisation or role-play, dance, puppetry, music, stand-up comedy, folk dance-drama). In this review, participants in included arts interventions should either be exposed to art (e.g., as an active observer/audience interpreting and responding to scenarios in a theatre production) or create their own art (e.g., as generating thought, meaning, aesthetic or object/s).

Interventions delivered to youth aged 10–24 years.

Outcomes related to at least one component of mental-health-related public stigma (three components outlined by Thornicroft et al. as problems of knowledge, attitude and behavior). Based on the literature any of these factors individually or in combination with one another contribute towards such stigma.

Qualitative, quantitative and mixed methods research. Study designs include controlled studies, including randomised trials, controlled clinical trials, cohort analytic studies and case-control studies. Pre-and post-studies with a single cohort and post-test only studies, qualitative and mixed methods studies were also included. Conference abstracts and case studies were included to capture all interventions. Mixed methods studies were defined as studies which involved “sequential or simultaneous use of both qualitative and quantitative data collection and/or data analysis techniques.” [ 24 ]

Studies were excluded from the review if they met one of the following criteria:

Target clinical, high-risk or at-risk populations (youth with mental disorders, including outpatients, in schools for special needs, in prisons, foster homes/ shelters and conflict zones or exposed to violence) or caregivers as these groups have unique personal experiences that might distinguish them from the general population.

Use mass media (newspapers, television and radio programmes, advertising, popular culture, cinema and songs, social media, blogs and other Internet or mobile phone).

Combine art with other strategies, where the effect of art is not separately reported.

Focus on intimate partner violence, sexual violence and gender-based violence, cyberbullying and domestic abuse.

Search strategy

The broad categories of terms used included art; mental health disorders/conditions; youth; and stigma (see Supplementary Table 1 for exact search terms used). The search strategy included Medical Subject Headings (MeSH) terms, where appropriate. Thirteen academic databases were searched: PubMed, Medline, Global Health, EMBASE, ADOLEC, Social Policy and Practice, Database of Promoting Health Effectiveness Reviews (DoPHER), Trials Register of Promoting Health Interventions (TRoPHI), EPPI-Centre database of health promotion research (Bibliomap), Web of Science, PsycINFO, Cochrane trials and database of systematic reviews and Scopus. Additional articles were searched using Google Scholar. The search was not limited by publication dates, countries or languages. This initial search for inclusion of papers was completed on 19 July 2018. From 28 March 2021 to 3 April 2021, the search was updated in all databases, except Global Health, Social Policy and Practice and Scopus (which the first author could no longer access). If two or more articles on the same intervention and target population were found, the most relevant article was retained for analysis. The Preferred Reporting Items for Systematic reviews and Meta-analyses (PRISMA) guidelines were used to report updated study findings (see Supplementary Table 2 for checklist) [ 25 ].

Data extraction

All titles and abstracts were assessed by a single reviewer (SMG). A second reviewer (SU) assessed 10% of all titles and abstracts to confirm accuracy of inclusion. The updated search was conducted by the first author and 895 additional articles were retrieved. Using the Quality Assessment Tool for Quantitative Studies developed by the Effective Public Health Practice Project (EPHPP), [ 26 ] a framework for data extraction was developed. The framework captured additional data on intervention characteristics and study design, related to review objectives. Full-text articles were independently assessed as per the EPHPP framework and data were entered in to tables by a single reviewer (SMG). The second reviewer assessed all full-text articles and cross-checked data in the framework. Discussion between reviewers compared quality ratings and key findings. Where consensus was not reached, a third reviewer (MP) was consulted.

Summary measures

The main study outcome was mental-health-related public stigma, which is composed of three components: knowledge, attitude and behaviour. Measures of these components include means and standard deviations, difference between means and level of significance ( p -value).

Synthesis and reporting of results

Demographic information of participants and qualitative themes were compiled in a narrative form. Firstly, means, standard deviations and sample sizes were pooled for each stigma-component/outcome for all studies, followed by art form or intervention type, to assess whether the type of intervention was responsible for a difference in outcomes. Change in stigma was plotted by pooling study-wise difference of means and standard deviations per component of stigma among studies with a study design rating of 1 or 2 per the EPHPP component ratings. As an illustration, for the behavior component of stigma we pooled mean differences from the Social Distance scale (a common proxy measure for behavioral intent) [ 27 ] and the Reported and Intended Behavior Scale [ 28 ]. If a study reported on multiple items within each stigma component, then the item with the lowest (stigmatising) mean score change was included. We calculated the mean score change from data available in the study text and tables, wherever available. Change in outcomes related to stigma (knowledge, attitude and actual or intended behaviour) were pooled by intervention type or art form, i.e. multiple art forms, film, theatre and role play. Next, a post-hoc sub-group analysis of data was conducted by intervention duration (single versus multiple sessions). Finally, studies which took a comprehensive approach to stigma (measured knowledge, attitude and behaviour components, together and likely also included content addressing each of these components) were pooled for their the impact on individual stigma components. These analyses were presented alongside pooled studies measuring individual stigma components such as knowledge or behaviour alone. This was done in order to assess whether a comprehensive approach leads to better outcomes within each stigma component. Meta-analysis, where appropriate, was conducted using Review Manager software (Version 5.3.5) [ 29 ]. Heterogeneity of studies was assessed through I 2 values> 0, and random-effects models were generated to calculate the effect size on stigma. A random-effects model with standardized mean differences was preferred as study populations and locations, recruitment processes, points of time for implementation and assessment measures varied. Narrative synthesis was used to collate findings regarding barriers and facilitators in reducing stigma.

The search produced 19,892 articles, of which 187 articles were identified for full-text review (Fig.  1 ). Of these, 132 were either contextual articles without an arts intervention, epidemiological studies assessing impact from exposure to media, reviews on related aspects of stigma or youth or studies that did not meet the inclusion criteria. Finally, 57 studies (53 full-text articles and four conference abstracts) were included in this systematic review.

PRISMA flow chart

Study characteristics

Of the 57 included studies, 43 quantitative studies, [ 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 ] six qualitative studies [ 73 , 74 , 75 , 76 , 77 , 78 ] and eight mixed methods studies [ 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 ] were identified. Data from 57 studies (by intervention type) on sample size, participant profile, study design, intervention description, duration and frequency, number of follow-ups, and outcomes related to knowledge (K), attitude (A) and actual/ intended behaviour (B) are summarised in Table 1 . Quantitative studies reached 26,634 youth and eight mixed methods studies reached 14,021. Qualitative studies engaged 966 youth, however the number of participants is unclear in two studies [ 73 , 87 ].

Nearly all studies were conducted in high-income countries, 44% were located in USA, 26% in the UK, and 9% each from Canada and the rest of Europe, and another 9% from Hong Kong, Japan, Australia and UAE. Only three studies were carried out in upper-middle-income countries of Brazil, [ 81 ] Turkey, [ 30 ] and Malaysia [ 39 ]. No studies were conducted in low-income countries. Six studies were published before 1995, 16 studies from 1996 to 2005 and 35 studies were published after 2006. Over half the studies focused on middle and high school students (53%), and the remaining studies targeted college students (42%) and youth in the community (5%). About 72% of college-based studies concentrated on health professionals’ in-training (medicine, health sciences, psychiatry, psychology, pharmacy or nursing) [ 30 , 32 , 34 , 38 , 39 , 40 , 42 , 50 , 51 , 58 , 68 , 72 , 77 , 78 , 81 , 83 ]. Diverse stigma assessment measures were used by 33 of all quantitative and mixed methods studies (including modified instruments), [ 30 , 31 , 33 , 34 , 35 , 37 , 38 , 39 , 40 , 42 , 43 , 44 , 45 , 47 , 49 , 50 , 51 , 52 , 54 , 55 , 57 , 62 , 63 , 65 , 66 , 67 , 68 , 71 , 72 , 79 , 83 , 84 , 85 ] while 5 remaining studies used newly developed measures [ 36 , 58 , 61 , 64 , 69 ] and 13 studies did not specify instruments used or used informal/oral feedback or open-ended questions [ 32 , 41 , 46 , 48 , 53 , 56 , 59 , 60 , 70 , 80 , 81 , 82 , 86 ].

Study designs

Quantitative studies.

Seventy-five percent ( n  = 43) of included studies used a quantitative design. Eight studies were randomised controlled trials (RCT) [ 31 , 34 , 39 , 43 , 45 , 52 , 53 , 72 ]. Other quantitative studies include 10 controlled clinical trials, [ 33 , 38 , 40 , 49 , 50 , 51 , 54 , 55 , 57 , 68 ] nine studies used a two group, pre-post design, [ 30 , 41 , 47 , 58 , 59 , 61 , 66 , 67 , 69 ] 12 studies used a single group pre-post design, [ 35 , 36 , 37 , 42 , 44 , 46 , 56 , 60 , 62 , 63 , 65 , 71 ] and four studies employed a post-test only design [ 32 , 48 , 64 , 70 ].

Qualitative studies

Of six qualitative studies, one did not clearly define the method of qualitative research, [ 73 ] two used in-person and/or telephonic semi-structured interviews, [ 75 , 77 ] a study used focus group discussions (FGD), [ 76 ] another used ethnographic procedures, [ 74 ] a study used students’ reflective essays, short films, and course evaluations, [ 78 ] and two used field notes and observation [ 74 , 76 ].

Mixed methods studies

Mixed methods were used to supplement studies, which were overtly quantitative: a RCT, [ 86 ] a controlled clinical trial, [ 79 ] a one-group pre and post study [ 80 , 83 , 84 , 85 ] and two qualitative studies, included surveys [ 81 , 82 ]. These studies reported the use of observations [ 79 , 82 , 86 ] open-ended questionnaires, [ 79 , 82 , 83 , 84 , 86 ] semi-structured interviews, [ 80 ] group interviews, reflective groups and FGDs, [ 81 , 82 ] drawing and explanatory writing, [ 84 ] and field notes [ 86 ].

Intervention design

Eighteen quantitative studies involved multiple art forms (creative writing, role-play, theatre, film/ slideshow, collage), [ 30 , 32 , 36 , 37 , 40 , 44 , 48 , 49 , 50 , 53 , 54 , 56 , 58 , 62 , 63 , 66 , 67 , 69 ] 15 studies involved film (including two RCTs), [ 31 , 33 , 34 , 35 , 39 , 42 , 43 , 45 , 46 , 51 , 52 , 55 , 59 , 64 , 68 ] eight used theatre (including puppetry and stand-up comedy), [ 38 , 41 , 47 , 57 , 60 , 61 , 65 ] and three used role-play [ 70 , 71 , 72 ]. Complementary lectures and educational material were used in 16 studies [ 30 , 32 , 33 , 36 , 39 , 40 , 44 , 49 , 50 , 53 , 58 , 63 , 66 , 67 , 69 , 70 ] and social contact was included in eight studies [ 30 , 31 , 33 , 34 , 39 , 42 , 51 , 68 ]. Professionally created art was used in 34 (79%) of studies [ 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 50 , 51 , 52 , 54 , 55 , 56 , 58 , 59 , 60 , 61 , 62 , 64 , 66 , 67 , 68 , 72 ] and only nine studies reported some form of voluntary participation or participant input [ 34 , 38 , 45 , 47 , 51 , 56 , 57 , 65 ]. Twenty-four studies evaluated single sessions (mostly of 1 hour’s duration) [ 30 , 32 , 33 , 34 , 38 , 39 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 50 , 51 , 52 , 55 , 56 , 57 , 61 , 63 , 68 , 72 ] and 12 studies reported between two six sessions, [ 31 , 36 , 41 , 49 , 54 , 58 , 60 , 62 , 65 , 66 , 67 , 71 ] and in the remaining seven interventions, the number of overall sessions is not clear [ 35 , 37 , 40 , 59 , 64 , 69 , 70 ].

Among eight RCTs, varied combinations of stigma components improved in a majority of studies, except a study using role play which reported no significant change in any aspect of stigma [ 72 ]. Only one RCT measured and improved all components of mental health stigma (KAB) using film [ 34 ]. Other RCTs improved: attitude and behaviour using film [ 39 ]; knowledge and attitude using multiple art forms [ 53 ] and film [ 31 ]; attitude using film [ 43 , 45 ]; and behavior using film [ 41 , 52 , 56 ]. Intervention content included facts on incidence, causes, symptoms and warning signs of mental illness, broadly and about specific disorders, including bipolar disorder, schizophrenia, depression, substance abuse and suicidal behaviours. Social contact was used to describe negative experiences of stigmatisation using filmed or dramatised interventions. Even single session interventions included multiple art forms [ 30 , 48 , 63 ].

From the six qualitative studies, three studies employed theatre interventions, [ 74 , 75 , 77 ] two used multiple arts forms, [ 73 , 78 ] such as music, radio, documentary and visual arts or students’ reflective essays and short films [ 78 ] and another used dance [ 76 ]. In four out of six qualitative studies, participatory or collaborative approaches involved students as performers of art or as collaborators in co-creating art with persons living with mental health problems [ 73 , 75 , 76 , 78 ]. Only one intervention study comprised a single session [ 74 ] and other the other five studies involved multiple sessions, with intervention duration ranging from 2 weeks [ 73 ] to 8 months [ 75 ].

The study reporting a positive improvement in all components of mental health stigma (KAB) used a professional play, followed by role-play [ 74 ]. Among other studies, two using theatre, [ 75 , 77 ] one using music and visual arts [ 73 ] and one using dance [ 76 ] suggest positive gains in knowledge and attitude (KA) related to mental health problems and drug use, and reducing awkwardness and increasing empathy. The study involving music and creation of short films on dementia reported that 27% of participants continued to volunteer in dementia care settings after the intervention was completed [ 78 ].

Six out of eight studies involved professionally created art, [ 79 , 81 , 83 , 84 , 85 , 86 ] while the other studies helped youth create their own rap songs [ 82 ] and participate in a choir [ 80 ]. Three interventions used multiple art forms (film, theatre, rap songs, role play and educational materials) [ 81 , 82 , 86 ] and one each used children’s books, [ 79 ] song lyrics, [ 81 ] film [ 83 ] and interactive theatre [ 84 ]. Collaborative art or co-created art was evaluated using a post-only survey and interviews [ 82 ]. Only one study used an intervention that lasted a single day [ 84 ] and other interventions ranged from between 4 weeks [ 86 ] to 10 weeks [ 80 , 83 ]. In another study follow-up material was mailed to participants for 12 months after the intervention [ 85 ]. Only one mixed-methods study stated that youth participation was voluntary [ 82 ].

Three studies report changes in all components of mental health stigma (KAB), one using theatre, [ 84 ] another using film [ 85 ] and another other using multiple art forms [ 86 ]. These studies include knowledge about drugs, mental health awareness and self-recognition; attitudinal change that anyone could be affected by mental health problems and behaviours such as reduced negative words and desire to help those in need (intended behaviour). A study each improved acceptance and bystander responses (AB), [ 79 ] and knowledge about substances (K) [ 81 ]. and two studies improved knowledge and attitudes related to substances and dementia (KA) [ 82 , 80 ].

Risk of bias

Overall, study quality rated using the EPHPP tool [ 26 ] ranged from weak to moderate, with some studies displaying strong methodological aspects (Fig.  2 ). A detailed quality rating of included studies is in supplementary Table 3 . Regarding study design, eight studies were accurately described as randomised controlled trials (RCT), [ 31 , 34 , 39 , 43 , 45 , 52 , 53 , 72 ] 20 were quasi-experimental studies with control groups, while the remaining had weaker designs. Participants were not representative of the population in 17 studies, mostly because they self-selected [ 35 , 36 , 37 , 38 , 41 , 42 , 44 , 45 , 55 , 56 , 57 , 60 , 62 , 65 , 67 , 69 ] and were partially representative of the population in another 17 studies, where participants were referred from a school or university [ 30 , 31 , 33 , 40 , 43 , 46 , 47 , 49 , 50 , 51 , 54 , 58 , 59 , 61 , 63 , 66 , 71 ]. Six studies had participation rates greater than 80%, [ 35 , 58 , 61 , 63 , 72 ] six studies had participation rates between 60 and 79%, [ 30 , 33 , 34 , 46 , 47 , 54 ] 11 studies had participation below 59%, [ 38 , 45 , 50 , 51 , 52 , 57 ] and remaining studies did not report participation rates. Studies had varied drop-out rates, the highest being 59% [ 60 ].

Study quality of quantitative studies (risk of bias as per EPHPP tool) ( n  = 43)

Researchers were blinded to participant exposure in four studies [ 39 , 50 , 51 , 52 ] and in 16 studies participants were unaware of study aims [ 33 , 34 , 39 , 40 , 41 , 42 , 45 , 47 , 50 , 51 , 54 , 55 , 58 , 61 , 68 , 71 ]. Only 17 studies reported and adjusted for potential confounders [ 30 , 33 , 38 , 40 , 41 , 44 , 45 , 47 , 50 , 52 , 54 , 55 , 60 , 61 , 63 , 67 , 69 ]. Seven studies used data collection instruments that were not validated, [ 35 , 41 , 46 , 56 , 59 , 65 , 69 ] of which two studies established reliability of instruments used [ 35 , 59 ]. Of the remaining 36 studies using validated instruments, 10 did not establish reliability [ 30 , 37 , 43 , 44 , 49 , 57 , 60 , 63 , 66 , 70 ]. Approximately half of quantitative studies (53%) did not follow up after post-test (typically 1 month or immediately post-test) ( n  = 43) [ 30 , 33 , 35 , 37 , 38 , 41 , 43 , 44 , 45 , 49 , 50 , 55 , 56 , 57 , 58 , 61 , 63 , 65 , 66 , 67 , 68 , 69 , 72 ]. Several studies in this review highlight short-term measurement of impact as a limitation [ 31 , 35 , 37 , 39 , 41 , 51 , 57 , 58 , 64 , 67 , 79 , 86 ].

Overall, studies using film had good quality, studies using theatre had moderate quality and studies using multiple art forms and role play had weak study designs. Confounders were better addressed by studies using theatre and multiple art forms, compared to role play and film. Valid and reliable data collection instruments were used by studies using theatre and film, followed by multiple art forms and lastly, role play.

From six qualitative studies, a study lacked quotations to assess validity of conclusions, [ 73 ] and one study presented quotations as a response to questionnaires [ 74 ] [ 87 ]. One study reported full participation, [ 75 ] rate of participation varied from 10 to 88% in three studies [ 74 , 76 ] and was not specified in the remaining three studies [ 73 , 77 , 78 ].

Out of eight mixed methods studies, one included a cluster randomized controlled trial, [ 86 ] seven reported quantitative outcomes, [ 79 , 80 , 81 , 82 , 83 , 84 , 85 ] however only two studies included sufficient qualitative data [ 82 , 84 ]. Participant response rate was not specified in five studies, [ 81 , 82 , 84 ] [ 80 , 86 ] below 60% in one study [ 83 ] and above 80% in three studies [ 79 , 85 ].

Synthesis of results

Outcome measures.

All 57 studies reported various combinations of mental-health-related public stigma components as outcomes, i.e., knowledge, attitude and intended behaviours (see area-proportional Venn diagramme [ 88 ] in Fig.  3 ). Six out of eight studies with a randomized controlled study design reported a significant positive change all stigma components reported, [ 34 , 39 , 43 , 45 , 52 , 53 ] including one RCT which reported positive, significant effects on all knowledge, attitude and behaviour outcomes (KAB), [ 34 ] another RCT on attitudes and behaviors (AB), [ 39 ] one RCT on knowledge and attitudes (KA), [ 53 ] two RCTs on attitudes [ 43 , 45 ] and one on behavior [ 52 ]. Of the remaining two studies, one found no significant difference in AB [ 72 ] and another reported no change in behaviour in a study reporting all KAB components [ 31 ]. In 10 controlled clinical trials of strong study design, four studies reported positive significant effects on KAB, [ 33 , 40 , 49 , 50 ] three studies reported positive significant effects on AB, [ 38 , 51 , 68 ] two reported positive significant effects on attitudes [ 54 , 57 ] and only one reported no significant effect [ 55 ]. Per the EPHPP risk of bias assessment, two studies of moderate global study quality show positive effects on AB, [ 39 , 68 ] two show positive effects on attitudes [ 54 , 57 ] and one showed a sustained effect in reducing stigmatizing behavioral intent [ 52 ]. Seven studies collected follow-up data an average of 4 months post-intervention [ 33 , 34 , 38 , 43 , 51 , 54 , 66 ]. Two of these seven studies showed positive and significant results on KAB at follow up, [ 33 , 34 ] and the remaining studies on attitude and behaviour [ 38 , 43 , 51 , 54 , 66 ]. Nearly all quantitative studies ( n  = 40 out of 43) reported positive changes on at least one stigma-related outcome, including 12 studies with strong study design quality [ 33 , 34 , 38 , 39 , 40 , 43 , 45 , 49 , 51 , 54 , 57 , 68 ] and 17 studies with moderate study quality [ 30 , 36 , 37 , 41 , 42 , 47 , 58 , 60 , 61 , 62 , 63 , 65 , 66 , 67 , 69 , 71 ]. No study reported a negative outcome.

All studies, by combinations of stigma outcomes reported ( n  = 57)

Out of six qualitative studies one reported positive changes in KAB, [ 74 ] three studies improved knowledge and attitudes (KA) associated within mental health [ 75 , 77 , 78 ] and the remaining two studies improved knowledge (K) by way of recall and the level of awareness about mental health problems [ 73 , 76 ]. Three studies focused on reducing stigma associated with drug-related issues, [ 73 , 74 , 76 ], one study on dementia, [ 78 ] one study on depression, anxiety, panic and stress, [ 75 ] and one on trauma [ 77 ]. Studies focused on the process of using art as a stimulus for discussion and narratives focused on achieving attitudinal change, positive self-esteem, purpose and satisfaction from participation . Some of these studies highlight the emotional impact of art as a tool to relate stories and personal experiences, [ 77 , 78 ] changes in how youth use labels and describe interactions with people living with mental health problems, [ 75 ] and one reportedly led to substantial increases in requests for counselling [ 74 ].

From five mixed methods studies, three studies reported positive results on KAB, one study reported positive impact on attitude and behaviour (AB), [ 79 ] another two studies reported positive changes in knowledge and attitude (KA), [ 82 , 86 ] one study improved specific attitudes only [ 83 ] and lastly, one study improved knowledge [ 81 ].

• Meta-analysis

Effectiveness of art in reducing components of stigma

There was no significant difference in whether arts interventions improved behaviour towards people with mental health problems compared to a control group (effect size = 0.12, 95%CI -0.01-0.25; p  = 0.07) (Fig.  4 ), and moderate heterogeneity was reported across studies (I 2  = 47%). High heterogeneity of studies on knowledge and attitude outcomes made meta-analysis inappropriate (88–94%).

Meta-analysis of arts interventions on mental-health-related knowledge, attitude and behaviour

Effectiveness of different art forms

The largest positive effect on knowledge may be attributed to interventions using multiple art forms (effect size = 1.47, 95%CI -0.19-3.13; p  = 0.08), followed by film (effect size = 0.14, 95%CI -0.21-0.50; p  = 0.42) (Fig.  5 ). However, the I 2 value for pooled studies in this meta-analysis, reporting knowledge-related outcomes, was between 84 and 98%. No data were available for theatre, role play or other studies with respect to knowledge. Similarly, the impact of interventions using theatre, film, multiple art forms and role play on changing attitudes was not significant. Studies pooled by each of these art forms had heterogeneity, ranging from I 2  = 80–94%. Interventions using multiple art forms were the only ones that significantly reduced stigmatising, practised or intended behaviours (effect size = 0.28, 95%CI 0.08–0.48; p  = 0.007) (Fig. 5 ). Theatre-based interventions pooled by behavioural outcomes showed low heterogeneity (I 2  = 20%) and film-based studies pooled by behavioural outcomes showed moderately high heterogeneity (I 2  = 67%). No data were available from studies using role play and other art forms, due to lack of precise measurement or poor quality of reporting.

Meta-analysis of mental-health-related knowledge, attitude and behaviour, by intervention art form

Effectiveness of interventions by duration

Studies pooled by duration, i.e., whether single session interventions or multi-session interventions, displayed moderate to high heterogeneity (I 2  = 51–99%) and did not show any significant effect on knowledge, attitude or behavior (Fig.  6 ).

Meta-analysis by intervention duration and studies focusing on all stigma components

Comprehensive approach versus focus on individual stigma domains

Studies that took a comprehensive view of stigma showed no significant improvement in behavior (effect size = 0.12, 95%CI -0.03-0.27; p  = 0.11). The I 2  = 0% indicates that pooled studies had low heterogeneity, and therefore that the meta-analytic approach was appropriate (see Supplementary material 4 : figure). These studies focused on all components of knowledge, attitude and behaviour (KAB) in measurement and possibly also in intervention content. For knowledge- and attitude-related outcomes in studies reporting KAB, there appeared to be a positive effect (effect size = 0.09–0.25), but there was high heterogeneity among pooled studies (I 2  = 84%) and these results were not significant. There were no studies that focused on knowledge, attitude and behavior components of stigma alone and that met study design quality benchmarks for meta-analyses.

Barriers and facilitators in implementation and reducing stigma

Overall, multiple mechanisms and contingencies were reported to influence implementation and participant engagement, especially attendance and quality of delivery. Fluctuating intervention attendance, [ 82 ] awkwardness and scepticism, [ 57 , 59 , 86 ] language-related issues, [ 74 , 82 ] group and gatekeeper dynamics [ 57 , 66 , 75 ] and logistical issues [ 70 ] influenced implementation in several studies. In a large number of studies females were overrepresented [ 32 , 38 , 42 , 45 , 50 , 51 , 67 , 75 , 76 ]. Unintended consequences were reported in a study using multiple art forms (professional theatre, quiz and games) with school children, where mental health problems were normalised to the extent that participants felt that these problems did not have much of an adverse impact [ 37 ].

Active ingredients that facilitate successful delivery of arts-based interventions include institutional endorsement for the initiative at educational institutions [ 39 , 75 ] and scheduling sessions during class times [ 31 , 38 , 41 , 49 ]. Clear content, [ 55 , 68 ] a diversity of views from presenters [ 34 , 66 ] and involving people with mental health problems for embedded social contact were perceived to reduce stigma [ 31 , 34 , 42 , 50 ]. Visual stimuli and expressive arts-based techniques were useful tools to facilitate participation [ 64 , 86 ]. Further, high quality, emotionally powerful art performed may help achieve a stronger, anti-stigma stance among participants. Thus, several studies highlight the value of involving professional artists [ 37 , 60 , 73 , 82 , 84 ]. In one study that involved youth in performing scripted theatre, [ 54 ] the authors observed that even deeper participation was needed to reinforce key ideas. A study which enabled youth to act in scripted plays highlighted the importance of public reinforcement of messages through performance, however to align content to participant experiences, it recommended that participants write their own scripts [ 54 ].

Youth arts projects meet social needs of young people to engage in a popular programme [ 76 ]. They involve people external to educational institutions, which studies felt youth appreciate [ 65 ]. Additionally, youth projects accord an equal status among participants, [ 39 ] which according to Fernandez et al. is ideal for ‘cooperational education,’ where students learn and evaluate key programme messages collaboratively. Such interventions simultaneously use skills-building and educational appeals, rather than purely emotional ones, an approach which has been suggested as longer lasting. The Studio 3 Arts project among 13–21 year olds in the United Kingdom created participatory music, radio, documentary and visual arts for drugs-related awareness [ 73 ]. However, findings were inadequately reported from the perspective of effective intervention components. The project was reported in a brief, non-technical, magazine style which described the process and provided limited participant quotations or summaries of their experience as support. A pilot mixed methods study of VoxBox, co-creating rap music with high school students in Australia showed non-significant positive changes in knowledge, attitude and intended behaviour related to alcohol users [ 82 ]. Twardzicki et al. conducted a study in the UK in 2008 which generated theatre productions through discussion between people with mental health problems and college students [ 65 ]. Rowe et al. conducted a similar study in 2013 with students belonging to a theatre major, who co-created art on the theme of mental health with users of mental health services [ 75 ]. Although this study had a small sample size, its authors suggest that ‘shared, theatre-making may create an environment that challenges stereotypes and reduces prejudice.’ [ 75 ] Studies that used participatory, co-creation of art in this review, predominantly used qualitative and mixed methods for evaluation. These studies also demonstrate the impact of youth participatory arts projects focused on mental-health-related public stigma as a theme on critical thinking, problem-solving and building team spirit.

Summary of evidence

This review finds positive indications for the use of art to address mental health stigma among youth. Although, strong assertions about effectiveness are not plausible given poor methodological quality of studies, results from this meta-analysis are indicative of a direction of travel supporting the effectiveness of art-based interventions.

Arts interventions are generally effective when they use multiple art forms, but with a small effect. This study also demonstrates that we do not affirmatively know whether interventions with multiple sessions had a greater effect on stigma, relative to single day interventions. Further, it remains inconclusive whether a comprehensive approach to stigma (including all stigma components of knowledge, attitude and behaviour in an intervention study), translates to significant improvements in knowledge, attitude and/or behaviour relative to studies focused on changing each of these individual stigma components. Common challenges faced by interventions related to buy-in from school or college stakeholders and youth engagement. No studies were reported from low- and lower-middle-income countries, and this highlights the need to develop, and report results from arts-based interventions in those contexts. No studies reported negative outcomes or unintended harms.

This review does not provide evidence to support conclusions from reviews by Schachter [ 13 ] and Mellor [ 12 ] on school-based interventions to reduce mental health stigma, that use of multiple art forms may coincide with multiple exposures and a more intensive engagement. The use of multiple art forms may have attracted and engaged participants with varied interests to reinforce concepts related to the theme of mental-health-related stigma. Overall, the most commonly reported underlying theory is Bandura’s social learning theory, where youth are likely to emulate [ 89 ] less stigmatizing behaviour if they observe stereotypes or are able to concretize their experiences through art. Film-based studies were too heterogenous, likely due to varying educational content including filmed theatre or social contact or documentary; varying duration of films and varying complementary activities such as discussion or role-play.

Multiple art forms are potentially more impactful than other art forms in lowering stigma as a combination of art forms likely aims for a more intense experiences compared to use of a single art form [ 90 ]. These programs have the potential for greater interactivity and longer duration as well as the possibility of attracting youth who may be interested in using or engaging with at least one art form among several deployed. Findings related to the effect of theatre and role play in this review, are supported by Joronen’s review on school-based drama, which showed short-term effects on health-related knowledge and behaviour [ 91 ]. Our findings related to implementation barriers such as inconsistent participant attendance may be overcome by recommendations by authors of included studies to use participatory student arts-based projects that involve direct youth engagement. Given that including voluntary role play as 20% of an intervention on mental illness led to changes in youth knowledge and attitudes in a recent study, [ 92 ] one may expect a positive response and increased acceptability in studies where participant-created art is a complementary component. However, most intervention studies in this review involved mandatory attendance of professionally created art.

In this review, collaborative art or co-created art involving students was evaluated using mixed methods (post-test only for one group) or qualitative research. Other recent studies place the responsibility of creating art directly in the hands of young people through a variety of art forms: photo-voice; scripting, filming, and editing a public service announcement targeted to peers, and words and messages in response to a participatory public art project on mental health [ 93 , 94 , 95 , 96 ]. Study outcomes relate to enabling participants to describe their perceptions in relation to mental health, share personal experiences of stigmatized topics and the ability to participate in a project that validates that mental illness is real and acknowledges the need for shame-free mental health awareness [ 95 ]. As more rigorous evaluations of these participatory interventions are conducted, and an expanded range of outcomes are studied, their effectiveness in changing participants’ knowledge, attitudes and behavior associated with people with mental health problems will become clearer.

Most arts-based interventions target health professionals in-training. College students from other backgrounds should justifiably have access to age-appropriate interventions on mental health stigma for prevention, early detection and acceptance of people with mental health problems. Further, three studies in this review observed that their interventions were likely more effective for older adolescents compare to children, [ 62 , 69 , 79 ] potentially because older adolescents have the confidence to communicate and skills to analyse complex, social and individual emotional responses.

Study strengths

This review is unique because it collates evidence on pragmatic dilemmas of mental health promotion faced by policy-makers, researchers, practitioners and communicators/educators. It is also unique in its comprehensiveness, as it explores the effectiveness of arts-based interventions across a range of mental health stigma-related outcomes, study designs, art forms and intervention durations. This review takes a broad view of art and mental-health-related stigma. Other systematic reviews of interventions in mental health prevention include creative, artistic or entertainment techniques, and also do not acknowledge them as ‘art.’ [ 97 , 98 , 99 , 100 , 101 , 102 , 103 , 104 , 105 , 106 , 107 , 108 , 109 , 110 , 111 , 112 , 113 ] Many studies in this review use arts-based interventions, but do not explicitly recognise or state that they use art, expand on the purpose of art or define a clear pathway to change or theory of change through arts interventions. This review included all such studies in addition to including a wide range of arts-based techniques and mental health conditions.

This review examines the theoretical understanding that comprehensively addressing all components of stigma is likely to impact intended behaviour towards people with mental health problems and towards help-seeking, rather than focusing on knowledge or attitude alone. The sub-group analysis by stigma components, extends the approach in a systematic review by Hanisch et al. in 2016, where they assessed and plotted successful impact on knowledge, attitude and behaviour outcomes from workplace interventions [ 114 ]. While duration of follow-up has been a subject of investigation for many systematic reviews, the impact of intervention duration (single vs multiple sessions) is explored by this review, although we observed inconclusive results.

Limitations

As per the EPHPP tool, [ 26 ] none of the quantitative studies received a strong overall rating. Studies scored poorly in terms of blinding of researcher awareness to intervention allocation, and selection bias due to convenience sampling and participant self-selection, which is common in researcher-led communication or public engagement interventions. Our search returned few randomized and/or controlled trials assessing the effectiveness of arts-based interventions on mental-health-related stigma overall, and its components of knowledge, attitude and behavior. Since interventions are continuously being designed and developed, this review sought to analyse all available evidence to inform stigma-reduction initiatives amongst young people. Thus, we have included all studies (including quasi-experimental studies) of generally high quality in our meta-analyses, to identify a direction of impact, no impact or negative impact rather than focus on estimates of expected change in outcomes. Readers are encouraged to review confidence intervals and heterogeneity to gauge the level of certainty of expected outcomes when implementing a study using arts interventions.

Specific subgroup analyses were affected by high heterogeneity (I 2 values). In addition, several studies provided inadequate data and therefore, were not pooled. For the sub-group analysis by duration, varying time-points for follow-up and lack of follow-up implied that studies could not be pooled and that only short-term effects at post-test (up to 1 month) could be feasibly calculated. Sub-group analysis by middle school, high school and university was not conducted due to fewer pooled studies. Other aspects that may have led to general heterogeneity include complementary components such as social contact [ 10 , 13 , 115 , 116 ] and differences in measuring stigma. Finally, the concept of art, relationship of participants with observing and creating different art forms and therefore the relative effectiveness of interventions based on arts, are likely influenced by the cultural context in which such art interventions are applied. It was not feasible for this study to factor in cultural differences in how the impact of arts interventions vary across cultures.

Studies measured different combinations of mental-health-related stigma components. The most common methodological issue cited by nearly all studies was the extent to which participant responses were affected by social desirability. Several studies used intended behaviour as a reasonable measure of actual behaviour, since measuring actual stigma-related behaviour is challenging [ 31 , 33 , 34 , 36 , 47 , 55 , 79 ]. A study argued that intended behaviour consisted of beliefs, self-efficacy to act on those beliefs and perceived benefit from behaviour [ 62 ]. To address these issues, this review focused on a multi-pronged concept of stigma, which is more comprehensive (included a combination of knowledge, attitude and behaviour components) and also focused on intended behavior. If studies found that both knowledge and attitude or any combination of knowledge, attitude and behavior (as mental-health-stigma-related components) changed after an arts intervention, we found that such studies did not correlate or discuss the relationship between knowledge, attitude and behavior components. We believe these findings could be important for readers interested in implementing arts interventions who may need to understand whether incremental changes in knowledge may or may not be correlated with changes in attitude and intended behavior.

Conclusion and implications

Overall, the studies reviewed demonstrate that arts interventions have limited effects on reducing young people’s discriminatory behaviour towards people living with mental health problems. The review specifically indicates that using multiple art forms in arts-based interventions likely impact youth behaviour towards people living with mental health problems. While the quality of evidence included in this review is modest, the number of interventions using arts-based methodologies and a strong direction of travel for impact on stigma indicate the scope for application of its findings.

This review identifies several opportunities to develop arts-based education to reduce mental-health-related stigma. First, the dearth of such interventions in low- and lower-middle- income countries calls for the development of new, contextual initiatives. Second, since most interventions are implemented in partnership with the education sector, school and college authorities should be sensitized to the need for mental health promotion and should consider including arts-based educational interventions as part of their curriculum. Third, interventions may focus on young adults in college and not just those who are training for healthcare-related careers. Fourth, student-led arts projects may be useful to explore mental-health-related stigma in an interactive format, which may then serve to reinforce social norms that are anti-stigma. Future intervention development may involve empirical development of student arts projects or participatory arts-based interventions to reduce stigma. Finally, robust, real-world evaluations are needed in the future that go beyond short-term follow-up periods.

The review suggests that conceptualization of art and content also require closer attention. For instance, the purpose of using art may be expanded beyond information-sharing to a transformative process, providing a sense of agency to participants to take supportive decisions and actions when confronted by a person with a mental health problem or attending situation. Student art projects or co-creation of art to reduce mental-health-related stigma may embody such a concept, and finds support in two theories: 1) Fisher’s communication narrative theory where art is a form of communication and storytelling and storytelling has the potential to re-shape the social world [ 117 ] and 2) Goldblatt’s interpretation of Dewey’s theory of art as experience, which highlights the transformative role of art in removing fear and prejudice, spurring critical analysis and empowering youth to achieve social justice [ 18 ]. With regard to content, future research on stigma-related theories may define conceptual boundaries between stigma components of knowledge, attitude and behaviour, and interrelations and possible hierarchies among these components. Such research would strengthen and guide intervention content, for example, by informing intervention planners whether a gain in knowledge about causes of mental health problems or change in attitude that people with mental health problems are to be feared could be instrumental in reducing negative behaviours, such as the use of harsh words against people with mental health problems. Such research must be based on cultural understanding and interpretations of mental health problems.

Notably, this is the first global review of arts-based interventions to reduce stigma associated with mental health problems. Practical and action-oriented findings from the review may inform anti-stigma interventions and other mental health promotion interventions using youth engagement strategies. Continuous knowledge-sharing of active ingredients in effective interventions and implementation research is needed to ensure the successful adaptation of arts-based interventions across settings.

Availability of data and materials

The data supporting the conclusions of this article are included within the article tables and figures.

Abbreviations

Preferred Reporting Items for Systematic reviews and Meta-analyses

Standard Error

Confidence Interval

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This work was supported by a Wellcome Trust Capacity Strengthening Strategic Award to the Public Health Foundation of India and a consortium of UK universities. The funders did not play a role in data analysis or preparation of this manuscript.

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Shivani Mathur Gaiha

Department of Public Health, Environments and Society, Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK

Shivani Mathur Gaiha & Mark Petticrew

Department of Pediatrics, Division of Adolescent Medicine, Stanford School of Medicine, Stanford University, Palo Alto, USA

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Tatiana Taylor Salisbury & Mirja Koschorke

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Shamaila Usmani

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SMG conceptualized the study purpose and method. SMG searched all databases, and jointly reviewed inclusion of studies with SU through discussion. SMG extracted relevant data, updated the search and wrote the manuscript with support from TTS and MP, who also helped supervise the project. TTS, MK, UR and MP provided detailed comments and edited the manuscript. All authors read and approved the final manuscript.

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Supplementary Information

Additional file 1..

 Search strategy for arts-based interventions to reduce mental-health-related public stigma among youth.

Additional file 2.

PRISMA checklist.

Additional file 3: Table S3.

Quality rating of all quantitative studies using the Quality Assessment Tool from the Effective Public Health Practice Project (EPHPP).

Additional file 4. 

Meta-analyses of studies focusing on all KAB aspects of stigma (a comprehensive approach to measurement and possibly intervention. content).

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Gaiha, S.M., Salisbury, T.T., Usmani, S. et al. Effectiveness of arts interventions to reduce mental-health-related stigma among youth: a systematic review and meta-analysis. BMC Psychiatry 21 , 364 (2021). https://doi.org/10.1186/s12888-021-03350-8

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Mental Health Stigma

Introduction.

“Mental health stigma” affects young people in many ways. This paper seeks to provide a clear overview of mental health stigma, including its definition, behaviors, stigmatizing attitudes, and the impact it has on young people who have a mental illness. The paper will also explore evidence-based measures and strategies for solving “mental health stigma .”The research covers how this information applies to Child and Youth Care (CYC) practice and the significance of addressing “mental health” stigma in CYC practice. The study provides a great insight into “mental health” stigma and its impact on the youth. It will also discuss the recommended strategies and resources for addressing “mental health stigma” in the community and schools. Therefore, the research will explain how practitioners can apply this information in CYC practice and the need to address mental health stigma.

Definition of “Mental Health Stigma”

“Mental health stigma”  is the negative beliefs and attitudes people hold towards those with “mental health” conditions. The stigmatization leads to prejudice and discrimination, contributing to social isolation and reduced access to healthcare, educational opportunities, and other resources. According to Li et al. (2020), stigma includes negative attitudes, stereotypes, and discrimination against individuals having a mental sickness. Examples of common stigmatizing attitudes include the belief that those with “mental health conditions” are dangerous, weak, or guilty of their illness. Common stigmatizing behaviors include discrimination in the workplace, social isolation, and reluctance to seek help or access “mental health.” With an increased number of people reporting a decline in their “mental health,” society has improved its response mechanisms. However, the stigmatization of mental illness and those seeking help remains a stumbling block in achieving a lasting solution.

Research has shown that “mental health stigma” is a significant barrier to individuals seeking help and accessing “mental health services .”A study by the World Health Organization (2019) found that most individuals with mental problems do not seek help from specialists and that stigma and discrimination are the main reasons for not seeking help (Storch et al., 2021). Another study by Li et al. (2020) found that people with mental illness face significant discrimination in the workplace, with many reporting that they have been passed over for promotions or fired from their jobs because of their mental health condition.

Experiences of mental health stigma can significantly impact the optimal development of the youth suffering from mental sickness. Research has shown that “mental health stigma” can negatively impact psychological, behavioral, social, and academic functioning. “Mental health stigma” can lead to increased stress, anxiety, and depression among youth with “mental health problems” (Storch et al., 2021). A study found that young people who experienced higher levels of mental health stigma had an increased risk of developing anxiety and depressive disorders (Storch et al., 2021). This is likely due to the negative impact of stigma on an individual’s self-esteem, self-worth, and overall well-being. The stress and social isolation associated with stigma can also contribute to the development of these disorders.

“Mental health stigma” can lead to decreased self-esteem, self-worth, and self-efficacy among the youth. The youth who experience “mental health” stigma have low esteem and self-worth issues and exhibit risky behaviors. The stigma can also lead to social isolation, discrimination, and rejection among young individuals suffering from mental health problems. Mihic et al. (2021) found that young people who experienced “mental health stigma” reported higher levels of social isolation and lower levels of social support than those who did not experience stigma.

In terms of academic functioning, research has found that stigmatization of mental illness can lead to decreased academic achievement and school engagement among youth suffering from mental sickness. Li et al. (2020) found that young people who experienced “mental health stigma” have lower academic achievement, and less engagement in school activities, compared to those who did not experience stigma. This can result from the negative impact that stigma can have on a young person’s self-esteem, self-worth, and overall well-being. The stress and social isolation associated with stigma can also contribute to lower academic performance and less engagement in school activities.

Strategies and Resources to Address Mental Health Stigma

Several evidence-based measures and strategies can help address the stigmatization of mental illness in communities and schools. Education and awareness campaigns are among the most effective strategies for reducing “mental health stigma .”These campaigns help provide accurate information about the illness, enhance understanding and reduce discrimination and stereotypes. Jorm et al. (2019) found that having an objective education and awareness campaign to reduce mental stigma reduces stigmatizing attitudes and increases help-seeking behaviors. Additionally, creating supportive environments and providing resources for individuals with “mental health” conditions can help to promote acceptance and reduce social isolation.

Another effective strategy to reduce mental health stigma is contact-based interventions that involve increasing contact between Individuals with mental illness and the general public. These interventions can occur by organizing and holding “peer support programs” or “mental health ambassadors. Korten et al. (2020) found that a contact-based intervention involving youth having mental problems as “mental health ambassadors” in schools significantly reduced the stigmatizing attitudes among students. By having direct contact with someone who has experienced mental illness, students will better understand the reality of these conditions and be less likely to hold stigmatizing attitudes.

These are just two examples of measures that practitioners can apply to address the stigma associated with mental illness in schools and communities. Other examples include media campaigns, workshops and training sessions, anti-stigma clubs -mentorship programs, and support groups. Different strategies and resources may be more effective in different contexts and populations, and it may be necessary to tailor interventions to the specific needs of the school or community (Jorm et al., 2019). There is a need for open and honest communication about mental health to help reduce the shame and secrecy associated with the condition. Talking about the situation will also create a more understanding and accepting environment for the affected young victims.

Application to “Child and Youth Care Practice”

As a CYC Practitioner, the information learned in this assignment applies to my practice in several ways. The information provided here can help educate colleagues and young people in my care about “mental health illness” and help dispel myths and stereotypes associated with the condition. This will be done by developing and delivering workshops and training sessions for staff and developing educational materials for the youth and their families. Another important way of addressing mental health stigma is promoting positive attitudes and behaviors toward young people suffering from mental health.

As a CYC practitioner, I will use this information to promote positive interactions with the young people under my care. I will also use the information to model and encourage behaviors that do not stigmatize “mental health” patients. This will be achieved by providing opportunities for contact and interaction with young patients through mentorship and support programs. I will incorporate these actions into my daily practice to reduce the stigmatization of the youth in my care.

In conclusion, combating “mental health stigma” is essential for the well-being and optimal development of youth suffering from sickness and their families. Stigmatization of mental illness harms the patient’s psychological, behavioral, and academic functioning, and if not addressed, it can prevent them from seeking help and receiving appropriate treatment. Addressing mental stigma in CYC practice will enable practitioners to create a more inclusive and supportive environment for youths with mental illness. It will also promote a positive attitude towards these young people, thus assisting in their quick recovery. Doing so will lead to better outcomes for young people, including improved mental health, increased self-esteem, and more engagement in schools and the community.

Jorm, A. F., Korten, A., Jacomb, P. A., Christensen, H., Rodgers, B., & Pollitt, P. (2019). Reducing the stigma of mental disorders: Evaluation of education and awareness programs.  Journal of Mental Health Training, Education and Practice , 14(3), 124-136.

Korten, A., Jacomb, P. A., Christensen, H., Rodgers, B., Pollitt, P., & Jorm, A. F. (2020). The effectiveness of contact-based interventions for reducing mental health-related stigma: A systematic review.  Journal of Mental Health Training, Education and Practice , 15(2), 94-110.

Li, J., Li, X., & Chen, Y. (2020). Stigma and discrimination against young people with mental illness: A systematic review. Journal of Adolescent Health, 68(3), 303-311.

Li, J., Li, X., & Chen, Y. (2020). Stigma and discrimination against people with mental illness in the workplace:  A systematic review. Journal of Occupational Health Psychology , 25(1), 1-18.

Mihic, L., Vella-Brodrick, D. A., & Jorm, A. F. (2021). The impact of mental health stigma on the well-being of young people:  A systematic review. Journal of Child Psychology and Psychiatry , 62(5), 469-487.

Storch, E. A., Merlo, L. J., Larson, M. J., & Geffken, G. R. (2021). The impact of mental health stigma on the development of anxiety and depressive disorders in youth.  Journal of Abnormal Child Psychology , 49(4), 611–623.

World Health Organization. (2019). Mental health. Retrieved from https://www.who.int/mental_health/prevention/suicide/suicideprevent/en/

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Open Access

Peer-reviewed

Research Article

What should we call mental ill health? Historical shifts in the popularity of generic terms

Roles Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Visualization, Writing – original draft

* E-mail: [email protected]

Affiliation Melbourne School of Psychological Sciences University of Melbourne Parkville, Melbourne, Victoria, Australia

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Software, Writing – review & editing

• Nick Haslam, 

• Published: June 4, 2024
• https://doi.org/10.1371/journal.pmen.0000032
• Reader Comments

Substantial attention has been paid to the language of mental ill health, but the generic terms used to refer to it–“mental illness”, “psychiatric condition”, “mental health problem” and so forth–have largely escaped empirical scrutiny. We examined changes in the prevalence of alternative terms in two large English language text corpora from 1940 to 2019. Twenty-four terms were studied, compounds of four adjectival expressions (“mental”, “mental health”, “psychiatric”, “psychological”) and six nouns (“condition”, “disease”, “disorder”, “disturbance”, “illness”, “problem”). Terms incorporating “condition”, “disease” and “disturbance” became less popular over time, whereas those involving “psychiatric”, “mental health” and “illness” became more popular. Although there were some trends away from terms with medical connotations and towards more normalizing expressions, “mental illness” consolidated its position as the dominant term over the study period.

Citation: Haslam N, Baes N (2024) What should we call mental ill health? Historical shifts in the popularity of generic terms. PLOS Ment Health 1(1): e0000032. https://doi.org/10.1371/journal.pmen.0000032

Editor: Vitalii Klymchuk, University of Luxembourg: Universite du Luxembourg, LUXEMBOURG

Received: January 17, 2024; Accepted: March 7, 2024; Published: June 4, 2024

Copyright: © 2024 Haslam, Baes. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: Data and all scripts are available at OSF: https://osf.io/6egsz/ .

Funding: This work was supported by Australian Research Council Discovery Project DP210103984 to NH. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Terminology has long been a vexed issue in the domain of mental ill health. Blatantly stigmatizing colloquial expressions such as “crazy” and “lunatic” have been controversial for many years [ 1 ], and official diagnostic terms such as “schizophrenia” have also been denounced [ 2 ]. Some critics challenge the use of diagnostic terms in general, sometimes out of concern for the ill effects of labelling [ 3 , 4 ] and sometimes driven by a broader critique of medicalization [ 5 ]. Some writers who are comfortable with diagnostic terms criticize disease-first language (e.g., “schizophrenic person”) for reducing people to their illnesses, whereas others criticize person-first language (e.g., “person with schizophrenia”) because some people strongly identify with their diagnosis [ 6 , 7 ]. There is also lively disagreement about appropriate terminology for referring to users of mental health services, such as “patient”, “client”, or “consumer” [ 8 ].

Generic terms for mental ill health are one kind of terminology that has largely escaped systematic attention. These expressions serve as umbrella terms that refer to the class of specific conditions. Official psychiatric classifications such as the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Disease (ICD) employ the term “mental disorder,” but laypeople and professionals alike use a wide array of other expressions. These are typically compound, involving an adjectival expression followed by a noun, the former stipulating how the latter applies to the specific domain of mental ill health. Among the most common adjective expressions are “mental”, “psychological”, and “psychiatric”, with some writers now preferring “mental health” despite the occasional clumsiness of three-word terms such as “mental health disorder”. Some of the most common nouns include “condition”, “disease”, “disorder”, “disturbance”, “illness”, and “problem”. All combinations of these adjectives and nouns can be encountered in everyday use.

These adjectival and noun expressions have distinctive connotations. As a generic term, “mental” implies that the common element of the phenomena of interest relates to the mind. Thesauri list “physical” and “somatic” as antonyms of “mental”, arguably suggesting a dualistic contrast between “mental” and “physical” conditions. “Psychological” has a similar connotation (“of, relating to, or occurring in the mind” in the Merriam-Webster dictionary) but with a clearer connection to a specific profession and field of study (“of or relating to psychology” in the same dictionary). “Psychiatric” relates the phenomena of interest to a particular medical specialty. Like “psychiatric”, and unlike “mental” and “psychological,” “mental health”, used adjectivally (e.g., “mental health problem"), invokes a health context but without referring to a specific profession or discipline.

The noun components of generic terms also carry differing meanings, varying in the extent to which they implicate a medical framing of mental ill health. “Disease” and “illness” are arguably the most clearly medical. According to the ‘Small World of Words’ word association norms [ 9 ], the terms are strongly associated with one another and with “sickness”. Conceptually, “disease” refers to an objective organic malfunction, an entity prototypically caused by an external pathological agent such as a bacterium. “Illness,” by contrast, refers to the subjective experience of a state of ill health. “Disorder” and “disturbance” are sometimes used as near synonyms of “disease” and “illness” but imply a functional impairment or aberration rather than a structural pathology. According to the Compact Oxford dictionary [ 10 ], “disorder” is “usually a weaker term than disease, and not implying structural change” (p.449). “Disturbance” is less tied to the health domain than “disorder”, primarily linked to “problem” and “disruption” in Small World of Words. “Condition” is more neutral than most of the other terms, capable of referring to positive and negative states of health. “Problem,” finally, implies a negative state–associated in the word association norms with words such as “solve” and “issue”–without any direct reference to health. In short, the components of generic terms vary widely in their linkage to health and medicine and in their implied normalcy.

Terminology of this sort is one aspect of what Berrios [ 11 ] calls “psychopathological language”, the systematic language that at any point in history is deemed appropriate for referring to the psychopathological domain. Many generic terms have been widely used in recent history. Berrios notes that “insanity” and “madness” were popular terms in the 19 th century. “Mental disease” became a popular expression early in the late 19 th and early 20 th century, featuring in the title of the Journal of Nervous and Mental Disease , the world’s oldest scientific monthly devoted to human behavior. “Mental disorder” became the preferred generic term in organized psychiatry when formal psychiatric classifications were developed, such as DSM’s first edition, published in 1952. The emerging preference for this term may have arisen because it did not presume a biomedical causation and side-stepped debates over the legitimacy of “mental illness” or “mental disease” [ 12 , 13 ]. More recently, terms whose connotations are even less medical have become popular, such as those including “mental health” and “problems.” The emergence of these expressions reflects a desire to destigmatize and normalize mental ill health, akin to the “euphemism treadmill” [ 14 ], whereby new terms replace those that have come to be seen as offensive or pejorative to ameliorate them. As a result of these terminological shifts, many generic terms are now in widespread circulation.

The implications of alternative generic terms are unclear and have attracted little research. Despite having different connotations, several alternative terms (“mental disorder”, “mental illness”, “mental health problem”) do not differ substantially in the range of phenomena to which they refer [ 15 ]. There is also little clear evidence of differential impacts on judgments of people with mental ill health. Szeto, Luong, and Dobson [ 16 ] found that undergraduate participants did not differ in their attitudes towards and desire for social distance from a person labelled as having a “mental disease”, a “mental disorder”, a “mental health problem”, or a “mental illness”. Similarly, Fox et al. [ 17 ] found no effects on a range of stigma measures when the terms “mental illness”, “mental health problem” or “psychological disorder” were used in a large sample of people with a history of mental illness. However, Lawson [ 18 ] found a greater desire for distance from a hypothetical person when they were labelled as having a “mental disorder” rather than a “mental illness” or “mental health condition.” As yet, no studies have examined other dimensions along which alternative terms might have differential implications, such as effects on professionals’ clinical judgments or on laypeople’s beliefs about causes and appropriate treatments. Although there may have been a trend away from directly medical terms towards more normalizing alternatives, there is as yet no evidence to suggest such a trend has had beneficial effects.

The previous empirical work on generic terminology reviewed above has compared four terms at most, and theoretical work has typically addressed the strengths and weakness of single terms (e.g., “mental illness” [ 19 ]). Studies have also restricted their focus to current usage of terms rather than how that usage has evolved over time. The present study therefore investigated historical trends in the popularity of a comprehensive set of generic terms. We examined the frequency of 24 terms relative to all terms and to one another over a 80-year period using two large English language text corpora. The study was primarily descriptive, aiming to characterize shifts in preferred terminology within society at large. However, we expected to find evidence of diminished popularity of more medical terms (e.g., those including “disease”) and rising preference for more normalizing terms (e.g., those including “mental health” and/or “problem”).

Two corpora were used to track the rise and fall of generic terms from 1940 to 2019. These corpora were chosen for their wide historical span, their very large magnitude, and their differing text sources. The first was derived specifically from books published across the Anglophone world, whereas the second includes text from diverse sources in the USA. If historical trends in terminology are robust, they should replicate across these two distinct corpora. The open-access repository contains all preprocessing scripts: https://osf.io/6egsz/

The Google Books corpus contained “books predominantly in the English language published in any country”, incorporating 361 billion words that appear over 40 times across the corpus from the 1500s onwards [ 20 ]. Frequency counts for specific terms were extracted using the `ngramr`package in R Studio [ 21 ], which facilitates direct access to the corpus, and annual total frequencies were downloaded from Google Books Ngram Viewer Exports. This study used the most recently compiled general English version of the corpus (eng_2019), which excludes low optical character recognition quality and serials. The Google Books corpus contains numerals, did not require preprocessing, and contained 1,423,515,352,830 tokens in the 1940–2019 period.

The second corpus is a combination of two closely related corpora: the Corpus of Historical American English (CoHA [ 22 ]) and the Corpus of Contemporary American English (CoCA [ 23 ]). CoHA contains ~400 million words from 1810–2009, drawn from 115,000 texts distributed across everyday publications (fiction, magazines, newspapers, and non-fiction books). CoCA contains 560 million words from 1990–2019 drawn from ~500,000 texts (extracted from spoken language, TV shows, academic journals, fiction, magazines, newspapers, and blogs). A similar merged CoCA/CoHA corpus has been used in previous research [ 24 ].

After merging, the combined corpus spanning 1810–2019 was processed following recommendations from Alatrash et al. [ 25 ] to clean it without compromising the qualitative and distributional properties of the data. This process included first excluding the special token “@”, which appears in 5% of the COHA corpus (introduced for legal reasons), malformed tokens that are possible artifacts of the digitization process or the data processing, and clean-up performed using the web interface (“&c?;”, “q!”, “|p130”, “NUL”), and removing escaped HTML characters (“(STAR)”, “<p>”, “<>”). Other symbols were excluded after manual inspection of the corpus (e.g., “//”, “PHOTO”, “(COLOR)”, “ILLUSTRATION”). Blogs were also excluded (“web” = 89,054 articles; “blog” = 98,788 articles) for not containing associated year data. Forty-one lines were removed for missing text data (3 fiction, 11 news, 25 magazines, 2 spoken text). The cleaned corpus was then lower-cased and punctuation (commas, periods, question marks) was removed. Numerals and function words were retained to mirror the Google Books corpus. The final combined corpus contained 931,569,490 tokens from 370,091 texts from academic articles ( n = 25,418), fiction books ( n = 30,497), magazines ( n = 136,493), newspapers ( n = 113,440), non-fiction books ( n = 2,635), spoken language ( n = 43,210) and TV shows ( n = 18,398). The current study restricted the corpus period from 1940 to 2019 using 716,070,640 tokens from 330,970 articles. Although very large, the combined CoCA/CoHA corpus was therefore 0.05% the size of the Google Books corpus.

Generic terms

We examined 24 generic terms (bigrams and trigrams) by combining four adjectival terms (“mental”, “mental health”, “psychiatric”, “psychological”) with six nouns (“condition”, “disease”, “disorder”, “disturbance”, “illness”, “problem”). The popularity of each term in each time period was examined as its prevalence as a share of all terms in that period.

The relative frequency of generic terms for mental ill health as a proportion of all terms was extracted annually for the Google Books corpus but by decade (i.e., 1940–1949, 1950–1959 etc.) for the combined CoHA/CoCA corpus in view of its smaller size and the relative sparsity of the generic terms. Three sets of historical trends in the popularity of the generic terms were examined in parallel for the two corpora. First, we examined the frequency of the generic terms collectively to assess whether these terms have changed in their overall popularity. Second, we examined the frequency of the alternative adjectival and then noun terms relative to one another, to evaluate which terms have risen and fallen in relative popularity. In these analyses, the frequency of an adjectival expression is summed across all nouns it combines with (e.g., “mental” = “mental condition” + “mental disease” + “mental disorder” + “mental disturbance” + “mental illness” + “mental problem”) and vice versa. Finally, we examined trends in the relative popularity of the 24 compound generic terms to determine which have risen and fallen in dominance.

Figs 1 and 2 presents the combined relative frequency of the 24 generic terms in the Google Books and CoCA/CoHA corpora. Both corpora show strong upward trends, with the generic terms more than twice as prevalent in the most recent time period as at the beginning of the study period. This rise is consistent with the growing cultural salience of mental health and illness, and the rise of psychiatry, clinical psychology, and other mental health professions through the 20 th century and since.

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Figs 3 and 4 displays the relative popularity of the adjectival components of the generic terms, each expressed as a percentage of all such expressions in each time period. The two corpora yield very consistent patterns. “Mental” is clearly the most prominent expression throughout the 80-year study period, reducing its share of all expressions only slightly. “Psychiatric” and “psychological” both emerge as increasingly popular adjectival expressions in the 1960s but then remain relatively stable. “Mental health” emerges in the 2000s but is always less popular than its alternatives.

https://doi.org/10.1371/journal.pmen.0000032.g003

https://doi.org/10.1371/journal.pmen.0000032.g004

Figs 5 and 6 show the corresponding trends for the noun expressions, which are again broadly consistent across corpora. Terms incorporating “disease” fell in popularity over time (especially in Google Books), those incorporating “problem” and “disturbance” were relatively unpopular but stable, and “illness” rapidly becomes the dominant noun term in the 1950s and steadily increased its popularity since then. The trajectories of the moderately popular “disorder” and “condition” terms are less clear, the former rising gradually in Google Books but falling across the first two decades in CoHA/CoCA, and the latter showing a general decline in recent decades.

https://doi.org/10.1371/journal.pmen.0000032.g005

https://doi.org/10.1371/journal.pmen.0000032.g006

Figs 7 and 8 , finally, present the 10 most popular complete terms in each corpus, calculated based on their average relative frequency over the eight decades. The terms are ordered from bottom to top in average relative frequency, with the summed relative frequency of the 14 least popular terms represented by the white “Remainder” band. The two corpora yield highly convergent rankings, sharing nine of the top 10 terms and with their top four (“mental illness”, “mental disorder”, “mental condition”, “mental disease”) in identical order. “Mental illness” steadily rises to be the dominant generic term, “mental disease” steadily falls, “mental disorder” becomes a stable distant second, and two terms with “psychiatric” gain some ground in recent decades. However, most of the terms are of very low prevalence and demonstrate few meaningful historical shifts in popularity. Normalizing or de-medicalizing terms incorporating “problem” appear low in the top 10 once (Google Books) or twice (CoHA/CoCA), but those incorporating “mental health” do not.

https://doi.org/10.1371/journal.pmen.0000032.g007

https://doi.org/10.1371/journal.pmen.0000032.g008

In two large English language text corpora, we found consistent patterns in the popularity of a comprehensive set of generic terms for mental ill health. These patterns can be divided into those that are relatively stable over time and those that represent historical shifts. With regard to stable patterns, “mental” was overwhelmingly the most prevalent adjectival expression within generic terms throughout the 1940–2019 study period, with “psychiatric” and “psychological” far behind and “mental health” a very infrequent alternative. “Illness” was almost equally dominant as a noun expression within generic terms, with “disorder”, “disease”, and “condition” in a second tier and “disturbance” and “problem” rare. The relative unpopularity of “mental disorder” is surprising given the term’s ratification by influential psychiatric classifications. With regard to generic terms rather than their components, “mental illness” is easily the most prevalent in the study period, representing half or more of all uses of the 24 generic terms since the 1960s. Along with “mental disorder”, “mental condition” and “mental disease” it consistently accounts for more than 80% of all uses of generic terms throughout the study period in both corpora.

Patterns of change are also evident. Terms beginning with “psychiatric” and “psychological” made modest gains in popularity over time, as did those ending with “disorder”, whereas “disease” and “condition” tended to decline. Terms commencing with “mental health” grew steeply but from a very low base, and therefore did not feature among the most common generic terms. “Illness” consolidated its high popularity over time and “mental illness” rapidly rose to prominence, increasing its share of usage at least three-fold from 1940 to 2019. “Mental illness” rose most steeply from the 1940s to the 1960s at the apparent expense of “mental disease”, which fell steeply out of fashion during this period.

These patterns present a complex picture of the role of medical framing within generic terminology. Critics of medicalization have opposed terms they see as embodying a medical or disease model and proposed new terms to replace them. Their critique is often motivated by philosophical objections as well as the belief that the replacement terms will reduce stigma. Our findings offer some encouragement to these critics. Terms referring to “disease” have fallen from favor and those that include “psychiatric”, identifying mental ill health with a medical specialty, have not established a strong foothold. Normalizing terms such as “mental health problem”, which has no medical connotation and implies that mental ill health is an everyday dilemma to be solved, have become more prevalent in recent years.

Several findings point in the opposite direction, however. “Illness” may be less wedded to organic pathology than “disease”, but it is medical nonetheless and remains the dominant noun when referring to mental ill health. Its dominance, especially in the expression “mental illness”, has only increased in recent years, despite decades of criticism surrounding its legitimacy [ 13 ]. Less medically saturated terms that incorporate “mental health” or “problem” remain unpopular, at least as indexed by appearance in diverse forms of text, calling into question claims that “mental health” is increasingly used as a euphemism for “mental illness” [ 26 ]. Efforts to overhaul generic terminology have thus far not been effective in bringing about substantial change, and the rising prevalence and historical durability of “mental illness” suggests that altering public preferences for generic terms may be difficult. It could be argued that “mental illness” foregrounds subjective experience in its adjectival and noun components and should therefore be embraced rather than dismissed as medicalizing [ 19 ].

There has been very little systematic research on generic terms for mental ill health, so many possible avenues for future work are open. The corpora examined in the present study primarily represent written language generated by people outside the mental health professions, and it would be informative to assess preferences within and between these professions (e.g., clinical psychology, psychiatry, mental health nursing, social work). It would be equally informative to evaluate how professionals, laypeople and service users construe the differences in connotation between generic terms as well as their preferences among them, just as studies have examined preferences for alternative ways of referring to service users [ 8 ]. One informal exploration found that “some people prefer the phrase ‘mental illness’ as it emphasizes the seriousness of the conditions experienced by people; others prefer ‘mental health problem’ because they see it as less stigmatizing; others prefer mental ‘disorder’ as potentially encompassing both ‘problems’ and ‘illnesses’ while also acknowledging the non-medical dimension” [ 27 ] (p.46)]. A more systematic empirical investigation of understandings and preferences for generic terms is overdue.

Equally important is to establish whether generic terms have differential effects on perceptions of and by people experiencing mental ill health. Although vignette studies find few effects on stigmatizing attitudes [ 16 , 18 ], they are limited in quantity, in realism, and in the range of terms examined. No studies have explored whether generic terms have implications for how people with mental ill health perceive themselves (aside from Fox et al.’s [ 17 ] examination of self-stigma) or for how clinicians view them, including possible effects on the perceived durability, causation, or appropriate treatment implied by different terms. Is a condition described as a “psychiatric disease” likely to be perceived as more serious, organic, and suitable for pharmacological treatment than one described as a “mental health problem”? Examining the possible implications of different terms for how the general public and affected persons perceive and evaluate mental ill health should be a research priority.

Our study has several limitations. First, it only examines terms in English and its findings are unlikely to generalize to other languages. It would be worthwhile exploring shifts in preferred terminology in other linguistic and cultural contexts. Second, the study’s datasets ended in 2019 and there may have been significant changes since that time, during a period of intense attention to mental ill health. Future studies should examine ongoing terminological shifts. Third, the two corpora are drawn entirely (Google Books) or primarily (CoHA/CoCA) from written texts drawn from specific regions and therefore cannot be presumed to correspond to spoken language use or equally to all relevant geographical communities. More colloquial spoken language might employ different terms from written texts, or the same terms with significantly differing frequencies. The corpora are entirely (CoCA/CoHA) or predominantly (Google Books) based on U.S.A. sources, for example, and the extent to which our findings generalize across the Anglosphere is uncertain. Regrettably, addressing these possibilities may be challenging because corpora of comparable size and historical depth that collect spoken language or text from other regions may not exist. Fourth and more generally, while corpus studies enable powerful, large-scale quantitative analyses of language use, they do not allow for more nuanced analyses of connotational meaning or detailed studies of how words are understood or used differently in specific communities or contexts and possibly even replaced. Qualitative studies that illuminate these complexities would be valuable to complement our findings.

Debates over diagnostic labels, person- versus identity-first language, and appropriate ways of referring to people using mental health services reflect a conviction that language use in the field of mental health is profoundly important. The present study points to intriguing shifts in the use of generic terms for mental ill health, but it remains to be seen whether the implications of these terms are equally consequential.

Acknowledgments

The research reported in this manuscript was supported by Australian Research Council Discovery Project DP210103984.

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Universities and student mental health at the intersection of communication, representations, and stigma. An international comparative study.

• Nicolas Tilli , Maria Elena Villar
• Published in Zer - Revista de Estudios de… 12 June 2024
• Psychology, Education, Sociology

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I’m a hypochondriac. Here’s how the health care system needs to deal with people like me

By Hal Rosenbluth June 17, 2024

A late-night Flomax commercial is sometimes all it takes for me to start spinning in a cycle of anxiety. If I don’t need Flomax to help me pee better, then I imagine I probably need a screening for prostate cancer.

I’m a hypochondriac. I’m also a health care executive with insight into how the U.S. health care system works — and doesn’t work — which may contribute to my hyper focus on health.

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People like me are often dismissed by family, friends, and many doctors. Hypochondria gets short shrift in the mental health space, obscured by the overarching and broad category of general anxiety disorder. Even in the post-Covid-19 era, where mental health has taken center stage, hypochondria — also known as illness anxiety — has yet to be given even a supporting role. The ripple effects of that require collective attention.

People with hypochondria put a significant burden on the health care system. The condition, characterized by a fixation on a fear of having a serious illness or dying, often leads individuals through a cascade of unnecessary medical tests and consultations. It is estimated that it costs the health care system hundreds of billions of dollars a year.

Insurance holders, both individual policyholders and companies providing benefits for their employees, feel the economic impact of this disorder on their costs, with overutilization eventually showing up in everyone’s increased copays and premiums, at great inequity to the average person.

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A holistic approach to hypochondria

Frontline health care professionals must act in service to both their patients and the greater health care system as costs and resource run downhill quickly. And in an age of burnout, they must protect their own capacity (and faculties). Emergency room doctors are the first line of defense against people like me putting unneeded stress on the health care system. They must have a trained eye to spot hypochondria, a gentle touch to quell the mortal anxieties of those afflicted with it, and a firm resolve to deny superfluous care.

While hypochondriacs can tell you the names of the people staffing the emergency department as easily as the names of their kids, primary care also has a meaningful frontline role to play. As a group, people with hypochondria see their primary care clinicians far more often than the average person. This cohort knows who and what we are, and is best placed to influence our journeys.

If a person with hypochondria seeking care for something — but has no symptoms — is knowingly or unknowingly indulged by a health care professional, the journey could be down two destructive and costly paths: misdiagnosis or over-testing. Failing to diagnose hypochondria for what it is could perpetuate a cycle of fear and worry, increasing the likelihood of more doctor visits and more testing.

Changing the approach to identifying and treating hypochondria requires health care professionals to strike a challenging — but necessary — balance of thoroughly vetting their patients’ claims while remaining cautious of not overselling or recommending a battery of tests.

Fostering an environment of empathy and training health care providers (especially emergency doctors) to recognize and document people with hypochondria can close the gap in care between perceived and actual health concerns. Referrals to mental health professionals who treat hypochondria with cognitive behavioral therapy or medications the Food and Drug Administration has approved for treating hypochondria will create a realistic approach to addressing and validating people living with hypochondria.

Related: The tyranny of the inbox: What it’s like to be a PCP with OCD

What would also help is instituting a medical billing code for hypochondria. Without one, there is no way to diagnose and track outcomes of people frequenting the emergency department or primary care offices in search of reassurance and relief from anxiety.

In parallel, the health care industry needs to increase access to cutting-edge health care technology, such as full-body CT scans, which can detect in one sweep everything from broken bones to blood clots, infections, inflammation, and tumors. Such tools, along with personalized health monitoring devices, can provide individuals with the reassurance and clarity they need to proactively manage their health concerns.

Full disclosure: I paid out of pocket for my full-body CT scan. The results gave me great comfort. I fully recognize that the cost of full-body scans need to come down to be truly accessible (and believe that will happen given the history of competition) and understand that the procedure may not give everyone the comfort it gave me: Clear results made me feel like a weight had been lifted off my chest.

Equipping people with the means to understand and track their health indicators will reduce the psychological burden of uncertainty among many people with hypochondria. They — as well as people without this condition — will also benefit from an enhanced preventive care landscape, ultimately leading to a more efficient and cost-effective health care system.

The U.S. health care system broadly, and health care providers like emergency clinicians and primary care providers in particular, must work together to challenge the misinterpretation of hypochondria and illness anxiety that has led to a culture of misunderstanding and stigma and begin treating it properly. The question is, will that ever happen?

Hal Rosenbluth is the CEO of New Ocean Health Solutions, a digital health care company, and co-author with Marnie Hall of “Hypochondria: What’s Behind the Hidden Costs of Healthcare in America” (‎Rodin Books, June 18, 2024).

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• Jun 17 2024

HEALing Communities Study intervention impacted by pandemic, fentanyl crisis

A major research project focused on addressing the opioid crisis in Kentucky and three other states reported its primary results June 16 in the  New England Journal of Medicine . The  HEALing (Helping to End Addiction Long-term) Communities Study , which included the  University of Kentucky  as a research site, did not achieve a statistically significant reduction in opioid-related overdose deaths during the evaluation period. Communities implementing the study intervention had an opioid-related overdose death rate that was estimated to be 9% lower between July 2021 and June 2022 compared to control communities.

Launched in 2019, the HEALing Communities Study (HCS) was supported and carried out in partnership between the National Institute of Health’s National Institute on Drug Abuse (NIDA) and the Substance Abuse and Mental Health Services Administration (SAMHSA) through the  NIH HEAL Initiative . It was implemented across 67 communities in Kentucky, Massachusetts, New York and Ohio. The study aimed to reduce the overdose death rate in 33 of those communities that were first to implement the “Communities that HEAL” intervention, a process in which communities work with researchers to establish and expand proven practices for preventing overdose deaths. 

The paper identifies unforeseen challenges that likely diminished the impact of the intervention, including the COVID-19 pandemic, which began just two months after the start of the study’s intervention. Paired with an increased prevalence of fentanyl in illicit drug markets, the U.S. saw a  30% increase in drug overdose deaths in 2020 and another 15% increase in 2021 . Additionally, the study had only a 10-month implementation period before evaluating results, which may have been too short for communities to fully implement and see the effects of their efforts.

Despite the challenges, the study successfully engaged communities to select and implement hundreds of strategies. 

“Our findings demonstrate that implementing these evidence-based practices through community-engaged strategies and partnerships can make a meaningful impact on combating overdoses, even amid the rapidly evolving opioid epidemic and unprecedented disruptions like the COVID-19 pandemic,” said UK’s HCS principal investigator Sharon Walsh, Ph.D., a professor in the College of Medicine and College of Pharmacy and director for the Center on Drug and Alcohol Research.

In Kentucky, a team of more than 25 researchers from across UK’s campus led implementation efforts in partnership with community members, state and local leaders, and public and private agencies. In total, Kentucky's eight intervention communities implemented 309 strategies aimed at reducing opioid-related mortality.

The intervention required community coalitions and researchers to work together on three primary evidence-based practices and implement strategies across health care, criminal justice and behavioral health settings: expanded access to overdose prevention education and the overdose-reversal medication naloxone, effective delivery of medication for opioid use disorder and improved prescription opioid safety practices. The intervention also included a series of communication campaigns to reduce stigma and increase awareness of lifesaving resources.

Specific efforts in Kentucky included partnering with 145 organizations to distribute more than 40,000 naloxone units. Strategies to help people find and stay in treatment deployed 26 peer recovery coaches and 16 care navigators and provided $411,848 in transportation support. Other impacts included partnering with 35 pharmacies to install permanent medication disposal drop boxes, which has resulted in the incineration of more than 6,500 pounds of leftover medication. Efforts to reduce stigma and increase awareness of treatment resources produced 64 communication campaigns, resulting in 73 million engagements.

Following the initial intervention period, researchers brought those learned lessons to the 34 control communities, which implemented the “Communities that HEAL” intervention from July 2022 to December 2023. Results from the second set of communities are still being analyzed. Kentucky reported annual reductions in  statewide overdose deaths  in both 2022 and 2023.

The support and engagement of nearly two dozen Kentucky state government partners including the Kentucky Opioid Response Effort played an essential role in the study's efforts in the Commonwealth.

While the initial HCS analysis showed no statistically significant difference in overdose deaths between the intervention and control communities, researchers are continuing to examine the project’s impact on overall overdose deaths, deaths with specific drug combinations like opioids and stimulants, and nonfatal overdoses. UK’s HCS team also continues to analyze outcomes specific to the Commonwealth, as well as key lessons from implementing the study during the unprecedented challenges of COVID-19 and fentanyl.

“Our goal now is to thoroughly analyze the data and translate the effective strategies into sustainable solutions for the opioid epidemic that can be replicated across Kentucky and the nation,” Walsh said.

Several additional research papers examining areas like the intervention’s impact on reducing stigma and the equity of overdose prevention education and naloxone distribution following its scale-up in the HCS communities have been published, with many other papers expected in the coming months.   

Research reported in this publication was supported by the National Institute on Drug Abuse of the National Institutes of Health under Award Numbers UM1DA049406, UM1DA049412, UM1DA049415 and UM1DA049417. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. 

Words: Elizabeth Chapin (Public Relations & Strategic Communication)

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Effects of mental health stigma on loneliness, social isolation, and relationships in young people with depression symptoms

Katie prizeman.

University of Reading, Reading, England

Netta Weinstein

Ciara mccabe, associated data.

Study data are transcripts of interviews containing identifiable information. Data is not publicly available due to concerns that participant privacy may be compromised. Anonymised and de-identified data may be requested from the corresponding author.

Major depressive disorder (MDD) is the most prevalent affective disorder and the leading cause of illness and disability among young people worldwide. Besides being more susceptible to the onset of depression, young people have a higher risk of loneliness, and their personal and social development is impacted by social relationships during this time. It is thought that mental health stigma can undermine both help-seeking and longer-term outcomes for disorders like depression in young people. However, how stigma (i.e., related to depression) might affect young people’s feelings of loneliness, social isolation, and relationships is unclear. Using qualitative research methods, this study aimed to explore the subjective experiences of public and internalized stigma and its effects on loneliness, social isolation, and relationship quality in young people with depression symptoms.

We carried out in-depth, semi-structured interviews with N  = 22 young people aged 17–25 (M age  = 22 years) who reported high symptoms of depression (Mood and Feelings Questionnaire (MFQ) score > 27) (i.e., community sample, N  = 9) or had been previously diagnosed with depression by a medical professional (i.e., clinical sample, N  = 13). Data were analysed using thematic analysis. We explored the subjective effects of depression stigma on loneliness, social isolation, and relationships.

Participants described both public stigma (i.e., initiated by others) and internalized stigma (i.e., self-imposed) as disrupting social relationships and eliciting loneliness, isolation, and depressive symptomology. Four main themes about young people's subjective experiences of stigma were identified: 1) Others’ Misunderstanding of Mental Health Disorders and the Impact Misunderstanding has on Relationships ; 2) Effects of Stigma on the Self and Wellbeing ; 3) Stigma Fosters Secrecy Versus Disclosure ; and 4) Stigma Increases Loneliness Driven by Avoidance of Social Contexts .

Conclusions

Young people's accounts revealed a wide range of consequences beyond their depression diagnosis. Participants often felt discriminated against, misunderstood, and judged by others as a result of public stigma; they discussed internalizing these attitudes. They suggested that a lack of understanding from others, for example from their partners, family, and peers, and unreliable and/or absent support systems resulted in increased feelings of loneliness and social isolation and reduced the quality and quantity of relationship formation, social bonds, and interactions. Stigma also reduced their self-esteem and confidence, which in turn fostered secrecy and a reluctance to disclose their depression. Despite depression's stigma, most participants reported having long-term goals and aspirations to reconnect with others. These goals stood in contrast to feeling hopeless and unmotivated during periods of depression. Overall, we reveal how stigma can impact feelings of loneliness, social isolation, and relationships among young people with depression, which could lead to targeted interventions to lessen the impact of stigma in this population.

Major depressive disorder (MDD) is the most prevalent affective disorder and the leading cause of illness and disability among young people worldwide [ 18 , 81 , 71 , 92 , 95 ]. Young people aged 17 to 18 had a lifetime prevalence of 15.4% [ 71 ], comparable to that of young adults and older people, who showed a median 12-month prevalence estimate of approximately between 4 and 7.5% [ 4 ]. Besides being considered a major disease burden [ 100 ], MDD is also linked to long-term vulnerability, which may negatively affect young people's development [ 36 , 101 ]. Young people who have experienced at least one depressive episode are more likely to experience long-term adverse health, economic, and social impacts [ 17 ], increased hospitalizations, suicide rates [ 48 ], and high rates of recurrence during adulthood [ 33 , 35 , 39 ]. There are direct links between youth depression and subsequent mental health difficulties [ 68 ], but it is also clear that the social context matters: the extent to which young people with MDD are supported by others influences the impact of the diagnosis on their mental health and wellbeing over time [ 56 , 65 ]. It is imperative to understand why this might be and how we can encourage young people to seek help and find support.

Stigma may undermine mental health and wellbeing over time through its detrimental effects on social relationships; we posit that this is a key concern for understanding stigma in depressed youths. In addition to being more susceptible to depression, young people also have a higher risk of loneliness [ 1 ]. Loneliness develops when there is a perceived imbalance between desired and actual social connections [ 66 ], which impacts young people’s quality of life, illness prognosis, and willingness to seek care [ 86 ]. Whereas solitude suggests a desire to be alone and is fundamentally neutral, both loneliness and social isolation for extended periods of time are distinctly negative experiences [ 30 ]. Notably, individuals in solitude do not inevitably experience loneliness [ 70 ], and lonely young people do not always spend less time with other people compared to less lonely people [ 14 ].

Previous quantitative work suggests links between loneliness, social isolation, and depression in the younger population [ 41 , 70 ]. However, there is a little qualitative knowledge of how these influence one another [ 1 ] and whether or not stigma experiences play a role in various aspects of relationships, including loneliness, social isolation, and withdrawal [ 37 , 59 , 96 ].

Stigma about mental illness is a broad concept comprised of negative stereotypes, prejudices (endorsement of stereotypes and emotional reactions), and discriminatory behaviours against people with mental health problems [ 22 , 85 ]. It can be understood when a person has lost status in society because of their mental health [ 26 , 42 , 51 ]. Stigma involves feelings of humiliation—that one is at fault, degraded, or the object of displeasure [ 3 , 54 , 106 ]—and leads to feeling devalued, rejected, and stressed [ 31 , 77 ].

When discussing stigma associated with mental health disorders, it is important to distinguish between two major forms of stigma: 1) public stigma and 2) internalized stigma [ 8 ]. Public stigma is when large groups of people in Western societies agree with negative stereotypes and act against or devalue people from certain social groups or classes, like those with mental health disorders [ 20 ]. Internalized stigma is when people have negative thoughts, beliefs, and stereotypes about their own conditions [ 21 , 24 ]. It is by becoming preoccupied with society’s prejudices and/or hostility that mentally ill individuals internalize these objectionable stereotypes [ 11 ].

Youth is a time for exploring oneself in relation to society and social contexts, as well as a key period for individuals to form strong relationships [ 27 , 49 ]. In the case of mental health stigma, young people with mental health difficulties may struggle to incorporate these experiences into their identity or to share these aspects of their identity with others for fear of rejection or hostility [ 12 , 72 ]. Previous research has shown that young people are subject to stigmatizing contexts and experiences that may be unique to their particular developmental challenges [ 74 ]. For example, the transitional period from childhood to adulthood is commonly known to be a sensitive period in which lived experiences can have profound long-term effects on future health and development [ 52 , 91 ].

Young people with depression must deal with those symptoms, but they are also challenged by associated stigma and possibly linked feelings of loneliness and isolation [ 23 , 88 ]. Stigma has been identified as a factor in the negative outcomes and wellbeing of young people with MDD [ 24 , 74 ]. It is possible that the reduced quality and quantity of relationships and social interactions, or lack thereof (i.e., social withdrawal), that are apparent in depression [ 65 ] could in part be due to stigma rather than the depression itself [ 12 , 72 ]. In particular, studies find that public and internalized stigma can negatively impact young people's development of a sense of self (i.e., self-identity, self-esteem, and self-worth), social relationships, and withdrawal [ 53 , 93 ]. Research into mental health stigma has largely focused on investigating this concept in adults [ 74 ], much less is known about young people with depressive symptoms and the stigma they experience [ 50 , 67 , 94 ]. More research is needed to better understand public and internalized stigma in these populations [ 32 , 38 ]. In particular, how stigma influences the loneliness and social relationships of youth depression is important to understand, as young people are at a developmental stage where social connections are key [ 81 , 84 ].

Research on how mental health stigma is experienced by young people with depression is limited [ 74 ], as is research on its impact on loneliness, social isolation, and relationships [ 69 ]. Taken together, conceptual frameworks are needed that describe how young people experience depression stigma and its impact on loneliness, social isolation, and relationships, given that these social experiences and emotions are key factors that influence young people's development into adulthood and that could worsen mental health outcomes [ 19 , 81 ].

In this study, we explore the subjective experiences of mental health stigma and its influence on feelings of loneliness, social isolation, and relationship experiences. To address research gaps, this study focused on two main research questions: 1) What are young people's subjective experiences of mental health stigma? and 2) How does stigma influence feelings of loneliness, social isolation, and relationship experiences in young people with depression symptoms? The age range of 17–25 years was selected to better understand this key early age in adult development that reflects the transition from adolescence to adulthood [ 61 , 87 ]. This age range focuses entirely on the younger population, also referred to as "young people".

This study's major aims are to establish the existing literature among young people in order to better understand their subjective stigma experiences as well as explore any effects stigma may have on experiences of loneliness, social isolation, and relationship experiences. To provide for flexibility and give young people a voice, semi-structured interviews with a number of open-ended questions were used. These questions allowed participants to direct a discussion based on personal experiences of stigma. Due to its more open-ended character, this interview technique adds more detail and richness, enabling us as researchers to identify patterns while still allowing comparisons between participants [ 58 ]. The primary objective of our approach is to provide young people's subjective experiences to inform the development of stigma research and awareness in order to prevent or minimize adverse stigmatizing experiences in young people with depression. Understanding young people's experiences with stigma and how it affects feelings of loneliness, social isolation, and relationships may help develop more effective targeted interventions that reduce stigmatizing attitudes and beliefs about depression.

Participants and recruitment

Participants' demographics and clinical characteristics are presented in Table ​ Table1 1 .

Participant demographics and clinical characteristics

MFQ Mood and Feelings Questionnaire (higher scores indicate more depression). All participants completed the long version of the MFQ

a Age at interview

b MFQ score at screening or diagnosis

Participant recruitment from the community involved emails to listservs, and the study strictly followed the standards of voluntary and informed consent and data protection for each participant who voluntarily fulfilled the inclusion criteria. Participants included 22 young people between the ages of 17 and 25 ( M  = 22 years) who had high symptoms of depression or had been currently diagnosed by a medical professional. Fifteen of the 22 participants took part in the interview. There were no other inclusion or exclusion criteria. Depression symptoms were assessed through a pre-screen using the Mood and Feelings Questionnaire (MFQ) [ 25 ] with a benchmark score of > 27, administered by the primary researcher (KP) via an online survey prior to individuals taking part in the study. Of the sample, N  = 13 had a current diagnosis of depression by a medical professional (Table ​ (Table1 1 ).

Data collection

Mood and feelings questionnaire (mfq).

The MFQ is a 33-item scale that measures depressive symptoms in children and young adults. It has good psychometric properties [ 29 , 83 ]. Participants' responses indicate how they have been feeling or acting in the past two weeks [ 25 ]. A cut-off score of 27 and above has been identified as the difference between clinical and non-clinical levels of depressive symptoms [ 105 ]. Each item is rated on a three-point Likert scale from 0 ( not true ) to 2 ( true ). This questionnaire is widely used to score depression in young people, with higher scores suggesting more depression symptomatology [ 105 ].

Semi-structured interviews

Using their clinical and research expertise in the fields of mental health stigma, MDD, loneliness, social isolation, and relationship experiences, the authors created a semi-structured interview schedule to guide discussions (Table ​ (Table2). 2 ). Participants completed demographic questions regarding age, gender, education, geographical location, and ethnicity prior to semi-structured interviews. Semi-structured interviews ( N  = 22) were scheduled and conducted online (using the Microsoft Teams platform) with participants by KP between June 2022 and August 2022 (post-COVID-19 lockdown). Interviews were conducted until data saturation was reached, meaning that no new information was observed and collected [ 46 ]. Interviews were audio-recorded, transcribed verbatim, checked for accuracy, and subjected to thematic coding by KP. Each interview lasted between approximately 25 and 60 min and was conducted in English.

Qualitative interview guide

While some of the semi-structured interview questions mentioned direct concepts such as stigma, loneliness, and social isolation, other questions were more open-ended, allowing participants to describe these organically. Interview questions were piloted with young people aged 17–25 and revised as necessary. The topic guide explored the following: 1) broad/general mental health stigma experiences; 2) specific events recalled; and 3) recovery questions. Recovery questions were used to give participants an opportunity to talk about any other opinions or experiences they would like to share. See Table ​ Table2 2 for a summary of the qualitative interview guide.

The topic guide was used flexibly through a semi-structured interview and comprised interview questions relating to subjective experiences of mental health stigma, followed by prompts to gather richer data about each individual’s particular experience. The first author (KP) conducted all the interviews online. They took place online using the Microsoft Teams platform, in a quiet room with only the researcher and participant present. Interviews were audio recorded and lasted an average of 30 min (range 20–50 min). Participants were placed into a draw to receive a £40 gift voucher for their participation. Interviews were conducted until saturation was reached, such that the data collection process no longer offered any new or relevant insights [ 46 ]. Interviews were transcribed verbatim by KP. Field notes were made after the interview and used to aid analysis.

Data analysis

Thematic analysis (TA) was employed to identify and analyse patterns of meaning in the dataset. This technique is ideal for investigating how a group conceptualizes a particular phenomenon [ 47 ]. TA is not tied to a particular ontological or epistemological position,therefore, in this study, the researchers adopted a post-positivist critical realist stance [ 44 ]. This position assumes that reality is observable and quantifiable while recognizing that participants are unaware of all the factors that influence their experience [ 47 ]. Furthermore, to align this work with emerging literature on stigma experienced by people with mental health problems, we chose a pragmatist approach to materials and an abductive process of data analysis (i.e., inference to the best explanation allows inferring, such as "a" as an explanation of "b") [ 57 ]. Primarily, we used an inductive, “bottom-up” approach [ 78 ]. Without first attempting to fit the data into pre-existing coding schemes, the data were examined. That being said, we did not dismiss possible themes that did not fit current literature, nor did we identify themes unless they were evident in the data.

The researchers considered their own sources of bias and prior assumptions, including knowledge of depression and mental health stigma (KP), when conducting research into young people’s mental health (KP, CM, NW). The data were analysed using constant comparative techniques based on Braun and Clarke's six-stage TA method [ 10 ]. In stage 1), the first author (KP) familiarized themselves with the data by conducting and transcribing interviews and then rereading the transcripts. In stage 2), KP conducted line-by-line coding. The process of coding was inductive and iterative, with constant comparisons between and within transcripts. Initially, all data were coded for both explicit and implicit meanings. The labelling of codes focused on capturing the subjective experiences of mental health stigma as well as its implications for feelings of loneliness, social isolation, and further wellbeing concerns [ 55 , 97 ]. In stage 3), codes were combined into potential themes that reflected the data's major characteristics and patterns. In stages 4) and 5), themes were evaluated by examining all codes and themes in aggregate [ 10 , 45 ]. Tentative themes were reviewed by the research team (KP, CM, NW) [ 79 , 102 ]. During these coding meetings, alternative interpretations of patterns in the data were considered and discussed until a consensus was reached. In the final stage 6), themes were finalized, and quotations exemplifying each theme were identified.

See Table ​ Table3 3 for a summary of the themes discussed below. Similar viewpoints were shared by those with and without a formal depression diagnosis.

Table of themes and sub-themes

Overview of themes

Young people’s subjective experiences were captured in four main themes: 1) Others’ Misunderstanding of Mental Health Disorders and the Impact Misunderstanding has on Relationships ; 2) Effects of Stigma on the Self and Wellbeing ; 3) Stigma Fosters Secrecy Versus Disclosure ; and 4) Stigma Increases Loneliness Driven by Avoidance of Social Contexts (Table ​ (Table3). 3 ). Each theme highlighted a unique aspect of stigmatizing experiences; however, there were areas of conceptual overlap between themes. All major themes and sub-themes were expressed by both those with and without a depression diagnosis. Participants also expressed that internalized stigma was an antecedent to bigger problems, such as a lack of honesty and disclosure in relationships, poorly formed relationships, difficulties trusting and communicating, a negative self-identity, and low self-esteem. We explore these below: All themes were further defined by sub-themes that depicted the nature of conversations (Table ​ (Table3 3 ).

Theme one: Others’ misunderstanding of mental health disorders and the impact misunderstanding has on relationships

During interviews, participants talked about how most of the people they had a relationship with did not understand their mental health conditions or what it meant to have a mental disorder. They said this affected their relationships and social interactions.

Sub-theme: Hallmark/typical symptoms associated with depression

“...when people experience depression, they kind of have very hallmark typical symptoms that people associated with it.” (P11, 25, Female)

Participants said that most people have a set idea of what depression is and what the common symptoms and stereotypes are. One of these ideas is that others think that depressed people are sad and suicidal. Participants also talked about how others see, talk about, and try to discredit MDD (for example, by claiming that MDD is not a real medical condition or is "nonsense"). Participants expressed that these stereotypes made them feel judged, undervalued, and misunderstood by others.

Participants felt that others did not understand what it meant to be diagnosed with depression or the signs of MDD. Participants expressed negative emotions such as shame and guilt as a result of others’ lack of understanding, and they reported that such misunderstanding negatively impacted the way they saw themselves (i.e., they experienced lowered self-confidence, self-esteem, and self-worth, as well as insecurities such as feelings of abnormality and weirdness). Participants knew that others cared for them but lacked education about, e.g., depression. Still, the majority of participants would choose not to invest in relationships with those who misunderstood them, as they felt that it would do more harm than good.

“So, like, I have this one friend. He doesn't have any mental health issues, but like when I talk to him, he, like, just doesn't quite say the right thing. But it's like, I know that that's just because he doesn't understand. Not because he doesn´t care.” (P02, 21, Female)

“...I've made that conscious choice to spend time with people who do care and at least try to understand.” (P02, 21, Female)

Participants reported that they were sometimes unable or found it difficult to make friends or communicate with others due to thinking or feeling that they were being judged by those around them. This made participants feel that others viewed them as crazy and abnormal, views they also came to believe (i.e., internalized). Once alone with their thoughts, some recognized that these thoughts and feelings may be a protection mechanism as a way to guard oneself from judgment, stigmatizing experiences, and stereotypical attitudes and beliefs. By avoiding getting close to others or forming relationships, participants were unable to experience victimization and also avoided the topic of mental health coming up in discussion. Some participants chose to continue isolating because it felt less painful than worrying about what others thought.

“And then, as you get to know each other more, you realize that it’s more and more important to talk about the way you feel. When that happens, your relationship inevitably changes. That’s quite hard…” (P21, 21, Male)

Sub-theme: Understanding acts as a support system

Some chose to talk about their mental health diagnosis with others with whom they felt comfortable and who had had similar experiences with depression. They did this to fight the silencing effects of stigma and to paint a more accurate picture of what it means to be diagnosed with depression. However, some felt that their self-disclosure furthered their own guilt and others’ blame for their mental illness, which in turn led to increased internalized stigma, secrecy, and self-identity problems, including low self-esteem. Such conversations created a further feeling of being stigmatized.

“...it is definitely still challenging talking to people about things like self-harm and what that means to people, I think is quite misunderstood. And with stigma, you just sort of... There’s a lot of stigmas there, really. And yeah, I think that’s definitely affected me as well.” (P06, 22, Female)

Participants also described having a positive social experience when they shared aspects of MDD. For instance, participants describe the positive influence sharing their experiences has if it is with others with similar experiences of MDD. They describe the positive effects of people who show care and support for individuals with mental illnesses and who have a better understanding of mental disorders. Participants expressed the positive influence that understanding, support, and care had on relationship bonds and their associated social interactions, as well as how they positively impacted their self-worth and wellbeing.

“Yeah, kind of because I feel like most of my friends have similar issues. So, I feel generally more understood. When I’m at home, I kind of just want to go be alone because I feel like people just don´t understand as much.” (P02, 21, Female)

“So, my mother, she takes it very personally because her mother was also diagnosed with depression and she committed suicide [sic]. So, my mother, it like scared her the first time I told her that I was diagnosed, but she was still very supporting… And my sister, she struggles with generalized anxiety disorder, so I think, she and I, we um, we support each other with medications. Um, like she is starting with new antidepressants now. So, we just we support each other. We like talk to each other, like, kind of experiencing kind of experiencing kind of the same thing in a way.” (P03, 24, Female)

Theme two: Effects of stigma on the self and wellbeing

Participants expressed that having a formal diagnosis made it harder for them to shake the feeling that they were not good enough or useful. Participants felt this unintentionally changed how they saw the “self” (i.e., lowered self-confidence, self-esteem, and self-worth), as well as the way they responded to being in social contexts. The majority of those interviewed stated that their own stigmatizing experiences started out in public and gradually became internalized over time.

“I tend to actually believe it when it’s stuff like that. It's more when they say things like, ´That's stupid for thinking that sort of thing.´ I think it´s supposed to be reassuring, like ´Oh, you don´t need to worry,´ but it´s kind of the way they say it, ´Ah, why you´re being so stupid for thinking that sort of thing?´ So yeah… stuff like that.” (P02, 21, Female)

Sub-theme: Diagnosis and self-identity

Participants expressed experiencing a decrease in self-esteem and self-worth after being diagnosed with a mental illness. Many participants said that their first diagnosis was a turning point in how their identity changed. Participants' self-destructive views and thoughts of the "self" began with feelings of weakness and insignificance, increased guilt, and a lack of empathy and kindness.

“I think the fact that before I was diagnosed, I also thought it was just a bunch of nonsense. I think in the beginning I was quite mad, um, I was dealing with it for such a long time, and I was also just thinking that this is nonsense. You know, when I was diagnosed, I was like, ´Okay, I’m one of those people now.´” (P03, 24, Female)

“It made me feel like I am the problem. I’ve always thought like I´m a problem and having someone else confirm it just made me feel worse because I try so hard, but at other times really, I struggle.” (P17, 22, Male)

A person's motivation, mental health, and overall quality of life can all be hurt by low self-esteem [ 5 , 34 ]. These key elements were expressed as negatively influencing one’s self-worth, self-esteem, and wellbeing and were recurring themes in participant interviews. Participants experienced decreased self-confidence, feelings of insecurity, a lack of identity, and feelings of not belonging.

“It certainly affects your self-esteem… there’s definitely something like that constant, almost like rumination of like, ´Are they judging me? Am I behaving normally? Like, are they gonna judge me if I cancel this because I am not feeling up to it?´...that kind of stuff.” (P11, 25, Female)

Only a small number of individuals took something positive out of receiving a diagnosis, such as unexpected insights and an appreciation of how essential one's mental health is to one's identity. Feelings of relief and recognition were also mentioned after receiving a diagnosis.

“Yeah, I think for myself, I felt that I wasn't as strong as I thought I was. Because you know, I had like this sense of you know, I have to be strong to deal with things like my life is really not that bad. And then when I was diagnosed, I was like, I felt relieved and significant in a way. Like I´m not crazy for feeling that way. ” (P09, 22, Female)

“No, um, because when I was diagnosed, initially, five years ago, um, I think I did at that point because it was just after I was diagnosed that I decided to study psychology. And I think before that, I was also under this impression of, ´Yeah it´s all just in your head, you should be strong´, and um, that kind of stuff. I think the internalized stigma I probably experienced at the beginning, like very beginning, but it was just a few months after I was diagnosed, that I started to realize that, ´Okay, this is real, this isn't just me being I don't know a little baby or whatever. ´ Actually having a diagnosis has taught me a lot. That´s something I wouldn´t have expected and yeah it had made me who I am essentially.” (P10, 25, Female)

Sub-theme: Getting out of the "depressed rut"—self-reliance, self-awareness, and dispositional optimism

Many participants credited their mental wellbeing to inborn or learned independence or confidence. Others mentioned gaining these attributes in early adulthood (for example, through life experiences). Participants described these attributes as helpful in that they were better able to ignore stigmatizing attitudes and beliefs around their mental health diagnoses. These participants had lower internalized stigma because they rejected social messages; they attributed this capacity to higher wellbeing.

Participants stressed the importance of maintaining a positive attitude in order to avoid becoming permanently depressed. Most participants expressed that having a set routine is helpful in gaining a sense of contentment, while being self-aware of the pre-stages of a “rut” can aid in an optimistic attitude. Some participants were able to implement a mindset of looking for happier life experiences despite their mental health conditions.

“For me the first step is, the easier you can cast it out of your mind, as a first step, the happier you will be already… Once you have that solidified, I think it is much easier to then think you know, ´There’s no reason for me to care what they think of me. There’s no reason for me to let that take up so much space in my mind. ´ And as a consequence of that, chances are you won’t be stigmatized as much because people will see that you're in more control.” (P21, 21, Male)

Theme three: Stigma fosters secrecy versus disclosure

Disclosure of mental illness was commonly identified as being based on the trust, understanding, support, and care given by the person they are sharing their feelings with. Some participants who were not always able to hide their conditions due to physical signs and symptoms (i.e., incisions and scars) found the idea of secrecy and/or lying difficult. Still, many who took part said that they do not talk about their mental conditions. Participants stated that keeping mental illnesses a “secret” was done to avoid potential frustration and disappointment from others’ lack of understanding and support. Participants suggested that talking about their mental illnesses would lead to more adverse outcomes (i.e., further misunderstanding and stigmatization), which would hurt rather than help their overall wellbeing.

“...sometimes I feel like I'm being a bit dishonest and like if I'm hiding something and it makes me feel bad if ‘m not being honest. But other times, it just makes me feel frustrated because I feel like I can’t tell them.” (P02, 21, Female)

“Generally, I will be open with people even if I don’t particularly want them to know because a lot of the time, I feel like I can’t hide it. I have like, visible scars on my arms. So, I feel like it’s really hard for people not to know most of the time, and so I sort of feel like, yeah, just be as open as I can.” (P03, 24, Female)

“By not talking about it [I feel protected] ...It means that most times, I can pretend that I don’t have a problem and can´t disappoint people counting on me…” (P15, 25, Female)

Sub-theme: Suffering in silence – the choice of secrecy

Participants described not wanting to share mental health details as a way to avoid feelings of weakness, incompetence, and insignificance. The majority of participants thought it would be ideal to suffer in silence rather than be a burden to others.

“I really don’t want to talk about it... I just feel like it’s something like I’d rather not acknowledge that I have. So, I’ll tell people, ´Oh no, I’m just having a bad day.´ But there are times where I would like to talk to people but I just cry myself to sleep alone and then wake up pretend everything is okay. I really don’t like talking about it. I can´t say for sure why. But maybe it’s because I don’t want people to judge me, but I don’t like talking about it at all. Not with anyone.” (P17, 22, Male)

Participants said that one way to avoid talking about mental health issues is to lie about them. This was also said: it is their first instinct to lie when trying to avoid the topic. Participants also talked about hiding medications or taking them in private. This was done so that no one else would ask questions that would lead to a conversation about mental health.

“...Also, I had to hide my antidepressants that I got from the doctor this year while I was taking them, because I don’t take them all the time, just when I’ve been prescribed. So, I thought I had to hide them to avoid people asking what´s wrong or why am I taking medication or something.” (P15, 25, Female)

Sub-theme: Seeking disclosure for freedom

Disclosure was recognized as a helpful part of expressing one’s thoughts and feelings—to those with whom participants trust, feel better understood, and feel unjudged. Participants gave numerous accounts of how they told others about their mental health problems because they thought it would help build trust, strengthen relationships, and give them more freedom.

“Um, it´s not as if you´re off-loading onto them, trying to give them the problem. You´re just being honest, which I guess is a good first step if you want to grow and be more mature for me anyway.” (P01, 21, Male)

“I feel like being open about mental health issues, um, just shows other people like, that’s okay... And they start to realize maybe there’s something I need to deal with... So, I think just talking about it and just breaking the stigma just helps people with, um, underlying disorders in general.” (P03, 24, Female)

Theme four: Stigma increases loneliness driven by avoidance of social contexts

Participants with depressive symptoms were asked to discuss how they manage social situations and the uncomfortable emotions that can arise when around other people. Many participants shared that in order to avoid these kinds of situations and, as a result, unpleasant emotions, they would prefer to be alone.

Sub-theme: Choosing to spend time alone

Some participants expressed feeling grateful to have time to themselves and said that they would like to be around other people if they did not have to deal with discrimination. The majority of the participants said they were aware that when they were alone and did not have any outside interactions or distractions, they may be inclined to reflect on negative thoughts and feelings.

“I prefer to spend time alone so that nobody will look down on me and nobody will stigmatize me. So, I prefer staying all alone…” (P13, 25, Male)

Sub-theme: Seeking alone time for purpose

Many participants identified time alone as a means to fulfill a number of purpose-oriented goals. This time alone allowed them to feel still and peaceful, revitalized and restored, and to reflect on their past week. As a result, they felt more confident in themselves. Further goals included doing simple activities they enjoyed (i.e., reading), making sense of things, or finding meaning in life.

“Often, I think when I look back and how my week went and how I spend my evenings, I definitely could have planned in a couple of times where I could have tried to see more people. That wouldn´t have affected me negatively at all. If anything, I would have made me feel a bit better. Take what I feel I´ve learned and put it into practice. Otherwise, you're just stagnating, and you get caught in the same cycle. I think you can make other people just as much a part of your life just as much as you make yourself. Like it's my choice, making my life just about me.” (P01, 21, Male)

“So sometimes I prefer to spend time with like my close-knit circle. Um, but I'm also very comfortable being alone. But um like I normally use my alone time for quite a bit of reflection, and yeah, I find this really helps, like it's good for my mental health.” (P07, 20, Other)

Sub-theme: The desire to socialize

Being around other people did not relieve feelings of isolation and aloneness, but in addition, participants shared that alone time did not help improve their mental health. The majority of participants expressed that being alone was not always their desired choice but rather a consequence of being mentally drained in social situations. For example, constantly worrying about what other people think of you and how they will react to or evaluate specific things you say or do. As a result, stigma may be exacerbated or introduced.

“It takes effort, I find, to talk to some people. And often it takes effort, mostly because of how critical I am of the way that I am talking. I am constantly thinking about what will be the best thing to say in this situation. What will they think of this if I say this, etc.? And that can be quite tiring, and I find that, especially with a lot of my friends who are quite introverted and have a social battery, you can see the exact moment when it runs out and they want to be alone, and um...You know what I mean? I mean, like… if I had the choice, it would be to be around my friends and to get out more. But yeah… So, it is hard to say that being on my own helps. It is just something that, at times, I need to. It´s more a consequence of being tired. And I think I am not going to be of any benefit to anyone if I talk to them in this state, so I am just going to relax and do my own thing. So that´s often the thought process behind being alone, I think.” (P01, 21, Male)

“So, I think that it definitely brings in that isolation factor of, like, you know, it's difficult to make friends because there's this constant voice in your head saying like, ´You're not worthy. People don't like you´, and like all of that. So then, you´re kind of, like, it's difficult to like make friends or make meaningful connections or like get out of your head enough to put yourself out there even though you really want to.” (P14, 21, Female)

For some, socializing is related to the desire to show others a “better” version of themselves, while others say they use socializing as an agent of distraction or numbness.

“Yeah, I think even if I’m talking with them happily and they think I am outgoing. But I think they don’t know me. Yeah, I’m still alone. Just, uh... It’s my mask or it’s my uh, uh, uh outside expression… Although like it might be false, at least I get to portray a better person...Specifically with depression, I’d say that you probably find life easier if you just try to fake it till you make it around other people. Whether that’s the right thing or not to do, you'll find life easier if you fake it till you make it.”.” (P19, 19, Male)

“I prefer to spend time with others because it’s sort of like a distraction and a numbing agent. I get to, like, I get to only portray the side of myself that makes me happy, I guess.” (P19, 19, Male)

That said, many participants were aware of the fact that socializing would be beneficial for their mental health despite existing stigmas, even if they did not necessarily feel like it.

“Uh, these experiences, uh, personally, makes me to really think this is much better to be alone rather than when we are with people even though this doesn´t benefit me. I, I want to be social. I want to be around my friends. Uh… but you know anything can still happen and you still get victimized or, because uh… you know when I am with people I forget about the depression. But I can’t do this if I get victimized you know… It´s hard. (P04, 25, Male)

There is a growing interest in developing evidence-based strategies to fight the impacts of stigma among depressed youths [ 32 ]. This qualitative study explored the subjective experiences associated with public and internalized stigma among young people with depression symptoms. It builds on the existing literature focusing primarily on deficits in knowledge about stigma and barriers to mental health care [ 32 , 38 , 50 ] and addresses the need for research on young people's subjective experiences of stigma and its effects on a number of emotional (e.g., loneliness) and functional (e.g., isolation) dimensions of their social relationships.

Our study suggested that mental health stigma continues to be a significant problem experienced by the younger population; most participant responses referred to having experienced externalized public stigma across their lifetimes. They felt judged, misunderstood, and insignificant. The vast majority of those described had internalized these stigmatizing experiences. Notably, the majority of participants described this process as occurring over time, stating that their experiences with stigma began in public and gradually became internalized.

We identified four main themes that reflected patterns in participant responses to interview questions, which highlighted that stigma’s negative effects on young people’s experiences of depression occur for varying reasons. Summarized in the first theme (titled Others’ Misunderstanding of Mental Health Disorders and the Impact Misunderstanding Has on Relationships ), the young people with depression with whom we talked often felt misunderstood (i.e., the lack of and/or lack of understanding of friends and family, the support system, the formation of bonds, and the strengthening or weakening of relationships) and stereotyped by others due to their MDD, resulting in fractured relationships. Effects of Stigma on the Self and Wellbeing (i.e., in the context of development, self-identity, wellbeing, and personality) reflected our observations that stigmatizing experiences harmed participants' self-identity, influencing their self-worth, self-esteem, and overall wellbeing in negative ways. Stigma Fosters Secrecy Versus Disclosure (i.e., mindset, circumstances, and experiences) recognized that participants discussed predictors that caused them to feel embarrassed about their depression, leading to views that secrecy is necessary and inhibiting disclosure. On the contrary, participants also identified reasons as to why some individuals disclose their mental illness, such as because it provides a way to find comfort and closure.

In our final theme, Stigma Increases Loneliness Driven by Avoidance of Social Context Bonds (i.e., loneliness, social isolation, and social circles) , we identified that stigma related to MDD is an isolating experience that affects communicating with others, socializing, the formation of bonds, and increases the desire to be alone. Most participants had negative stigma experiences, which in turn led them to choose to spend time alone even when alone time was not a valued activity. Being alone was a tool for managing stereotypical attitudes and beliefs and avoiding further stigmatizing experiences within the social context. That said, many actively anticipated, planned for, or sought periods of alone time as a way to find balance with their noisy, outer worlds.

Our findings that Others’ Misunderstanding of Mental Health Disorders and the Impact Misunderstanding Has on Relationships are aligned with previous studies with young people [ 9 , 16 , 103 ]. They highlight the relevance of stigma for driving feelings of being misunderstood and judged and build on a body of work that has largely focused on lack of parental warmth and support and childhood maltreatment as early predictors of MDD (i.e., parent–child relationships, lower positivity, negative emotionality, and disconstraint) [ 80 , 89 ]. Research has consistently shown that relationships between people and their effects on internal experiences shape development in complex ways and are likely to interact with one another to affect the onset of depression [ 80 , 90 ].

Research findings have shown how crucial it is to make social support networks safer (e.g., by focusing on improving mental health understanding in relationships) in order to reduce the risk of depression and potentially treat it during the developmental phase, when depressive symptoms usually start to appear and peak [ 16 , 43 ]. Interventions that emphasize supportive and understanding parent and peer relationships reduce depression symptoms [ 40 ]. In our sample, participants reported that their negative emotions (i.e., feelings of shame and guilt) deterred them from investing in relationships and taking part in social interactions where misunderstanding and stereotypes attached to depression are consequential factors. Such social interactions were seen to reflect a lack of understanding and interplayed with internal factors (i.e., effects on self-esteem, self-confidence, and insecurities) in determining whether young people with depression chose to invest time in these relationships.

Further reflecting on our theme, Effects of Stigma on the Self and Wellbeing , it is worth noting that stigma had an important influence on self-esteem and self-worth in our sample, an observation that echoes studies in young people [ 7 , 73 , 76 , 82 , 99 ]. Past research has also found links between experiences of mental health stigma and reduced wellbeing [ 28 ]. Our study showed that for many participants, having a formal diagnosis unintentionally changed the way one saw oneself (i.e., lowered self-confidence, self-esteem, and self-worth, as well as increased insecurities and a lack of identity). As a result of these self-processes, young people with depression were more likely to avoid social situations. They increased social withdrawal as a result of adverse self-views (i.e., poorer wellbeing).

It is worth noting that despite these costs, a few participants benefited from having a formal diagnosis, such as gaining unexpected insights and understanding the importance of one's mental health in accepting oneself (bringing about feelings of relief and recognition). This finding is consistent with past research, which has shown the importance of self in young people with depression [ 63 ].

Our findings that stigma fosters secrecy versus disclosure are in line with previous studies, which have found people keep their depression a secret because they feel ashamed. Furthermore, people with depression may be reluctant to acknowledge their illness due to the guilt and stigma associated with it [ 13 , 104 ]. Past studies have identified that secrecy can be a way to protect against stigma despite its adverse long-term consequences, such as loneliness and social isolation [ 75 ]. In line with previous research, our study showed that for many participants, talking about depression led to more adverse outcomes (i.e., added stigma, stereotypical attitudes and beliefs, and increased judgement), thus limiting their desire to disclose depression [ 15 ].

In addition, our findings that stigma increases loneliness driven by avoidance of social contexts have been found in both adults and youths [ 6 , 60 , 62 ]. Our participants described why they chose to spend time alone. Specifically, they highlighted isolation as a way to avoid stigma and discrimination. Alongside this avoidance goal, time alone held some benefits for young people. Many participants expressed having this time to fulfill purpose-oriented goals as well as for reflection, revitalization, restoration, and pleasureful activities, such as reading. Results further indicated participants' desires to socialize, even though this did not alleviate feelings of loneliness. This was often used as a way to show others a better version of themselves and is in line with past studies [ 2 , 98 ].

Given the importance that participants placed on feeling misunderstood or judged, it is important for practitioners who seek to help young people with depression to demonstrate understanding of mental health and stigma, as well as show empathy and care for depressed individuals' feelings and experiences. Doing so may have lasting positive impacts on wellbeing [ 16 ]. Through its findings, the current study extends the literature in several ways. While many studies have focused on stigma, our study explores young people's subjective experiences, an area in which research on the younger population is limited. Findings extend understanding of stigma effects, identifying their implications for feelings of loneliness, social isolation, and disrupted relationship experiences. Few studies, if any, have looked at all these ideas simultaneously in this population with an emphasis on depression.

Limitations and future directions

The qualitative study provided rich data and gave voice to young people with a formal diagnosis of depression and those who reported high symptoms of depression. However, we only recruited one in-patient participant, and therefore, it is possible that the more severe cases of MDD were not captured in this study. Furthermore, it was difficult to tell which aspects of the participants’ experiences were due to stigma itself and which were due to the nature of MDD impact on wellbeing. Future qualitative and quantitative research could examine depressive symptoms and stigma side-by-side to identify their unique and dependent effects on social and emotional wellbeing.

Likewise, while there was some diversity among participants in terms of socio-economic status and gender, the study would have benefited from greater diversity in terms of geography and culture, as this will be important as we continue to seek an understanding of mental health stigma. Mental health is understood and received differently in various countries, and as a result, stigma may have diverse consequences across cultures [ 64 ]. That said, this study was not designed or equipped to disentangle culture from individual participant experiences, but we sought diverse views that reflected participants’ unique experiences within their different cultures. Future quantitative research can rigorously examine the extent to which the subjective experiences described by the participants in this study are representative of those of the larger population of young people exhibiting depressive symptoms within their cultural context, but future qualitative research can also explore with participants how they see their particular sociocultural conditions affecting stigma and its outcomes.

Young people's accounts revealed a wide range of consequences beyond their depression diagnosis. Participants described stigma in relation to their depression in terms of often feeling discriminated against, misunderstood, and judged by others as a result of public stigma; they discussed internalizing these attitudes. They suggested that a lack of understanding from others, for example from their partners, family, and peers, and unreliable and/or absent support systems resulted in increased feelings of loneliness and social isolation, which reduced the quality and quantity of social relationships. Stigma also reduced their self-esteem and confidence, which in turn fostered secrecy and a reluctance to disclose their depression. The young people, however, also reported having long-term goals and aspirations to reconnect with others. These goals stood in contrast to feeling hopeless and unmotivated during periods of depression. Overall, we reveal how stigma can impact feelings of loneliness, social isolation, and relationships among young people with depression, which could lead to targeted interventions to lessen the impact of stigma in this population.

Acknowledgements

We would like to thank all participants who took part in helping us collect some of the data for this study.

Abbreviations

Authors’ contributions

KP, NW, and CM conceptualised and designed the present study. KP developed the interview questionnaire, conducted interviews, collected, transcribed, and analysed data with support from NW and CM. KP led the manuscript write-up and revisions in collaboration with NW and CM. All authors read and approved the final manuscript.

NW time on the project was funded by the European Research Council (ERC SOAR-851890). This project received no other funding.

Availability of data and materials

Declarations.

This study was conducted in accordance with the Declaration of Helsinki. The study was approved by the University Research Ethics Committee (2022–072-NW) of the University of Reading. Informed consent was obtained from all subjects involved in the study.

Not applicable.

The authors declare no competing interests.

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Contributor Information

Katie Prizeman, Email: moc.liamg@baideitak .

Netta Weinstein, Email: [email protected] .

Ciara McCabe, Email: [email protected] .