Incorporating Lived Experience Perspectives Crucial in Reducing Global Mental Health Stigma
The study, published in eClinicalMedicine, is the first to co-produce research with people with lived experience of mental health conditions to investigate global perspectives of mental health related stigma and discrimination.
198 participants from over 30 countries across Europe, the Americas, Africa, Asia, and Australia/Oceania shared their perspectives on the role that language, media, and societal reactions play in perpetuating stigmatising views. Researchers found that insensitive language and misinformation continues to reinforce harmful stereotypes about mental health conditions around the world. Tokenistic involvement of people with lived experience resulted in weak anti-stigma campaigns with little positive impact.
The findings emphasised that people with lived experience play a key role in efforts to reduce stigma and discrimination.
Superficially including people with lived experience in research is not enough – there must be genuine collaboration. By co-producing our research with people with lived experience, we developed a deeper understanding of global perspectives of stigma, centred around the priorities of those that are impacted by discrimination. Our findings highlighted the role of language, media, and societal reactions in perpetuating stigma, and emphasised the importance of involving people with lived experience in the production of anti-stigma activities to maximise impact.
Dr Petra Gronholm, first author of the study and Research Fellow at King’s IoPPN
This study included people with lived experience as co-authors and collaborators at every stage of the work, from developing methods and data collection to analysis and conclusions, as well as writing the manuscript for peer-reviewed publication.
The role of language and the media
Participants reported that terms used for mental health conditions, both in informal and healthcare settings, were often derogatory or insensitive, perpetuating stigma and discrimination. They emphasised that using person-first language was important to avoid feeling defined as a diagnosis, rather than a person.
A participant from Russia said: “Being addressed ‘psycho’ or ‘mental’ whenever we even try to articulate our mental health struggle and overthinking we experience, [can] make us feel unsafe to share it [mental distress]… fear of judgement make it hard and unsafe for us to admit we have mental health issues.”
The media was identified as a key mechanism for reinforcing harmful stereotypes through language, imagery, and misinformation. Participants felt that media and culture contributed to societal reactions and misunderstandings about mental health. Many participants feared negative reactions to disclosing conditions from family, friends, workplaces, and healthcare professionals.
However, person-centred, balanced, and factual media content on mental health difficulties could normalise the topic and educate people.
Charlene Sunkel, senior author of the study and Founder and Chief Executive Officer of Global Mental Health Peer Network, said “We identified media as a key mechanism to influence stigma and discrimination. For decades, this powerful institution has contributed to spreading misinformation, inappropriate language, and reinforcing negative stereotypes about mental health difficulties. But media also has a central role and responsibility in tackling stigma and discrimination, such as providing a platform for public figures and celebrities to speak out about mental health. Involvement of people with lived experience is key to ensuring accurate and inclusive narratives are presented in the media and reduce societal stigma and discrimination.”
A participant from Kenya said: “There has been increased media coverage on mental health and a general sense of tolerance has grown.”
Lived experience involvement in anti-stigma activities
Although anti-stigma activities such as awareness-raising campaigns and education initiatives were thought to be helpful, participants felt that lived experience involvement was sometimes tokenistic, resulting in reduced effectiveness.
Participants experienced multiple challenges during their involvement in anti-stigma campaigns, including negative reactions from others, the burden of reliving past experiences, and sensing that their involvement was superficial. However, training and support for people with lived experience to enable them to speak out and share their narratives safely helped overcome some of these challenges, alongside the personal sense of satisfaction that came with involvement. The researchers noted that all participants had taken part in anti-stigma activities, which may have influenced their perspectives.
A participant from Norway said: “[It is] hardest to share a story or deliver a workshop if a safe space is not created first.”
The authors emphasised that participation at all stages of anti-stigma programme planning, delivery, and evaluation needs to extend beyond a tokenistic role to genuine collaboration to effectively reduce stigma and discrimination.
The study follows The Lancet Commission on Ending Stigma and Discrimination in Mental Health, published in October 2022, which resulted in expert call for radical global action to end stigma and discrimination against people with mental health conditions. The Commission emphasised the essential role that people with lived experience play in reducing stigma and claiming their rights, a message that is reinforced by the new findings.