The lived experience of mental disorders in adolescents: a bottom-up review co-designed, co-conducted and co-written by experts by experience and academics.

We provide here the first bottom-up review of the lived experience of mental disorders in adolescents co-designed, co-conducted and co-written by experts by experience and academics. We screened first-person accounts within and outside the medical field, and discussed them in collaborative workshops involving numerous experts by experience - representing different genders, ethnic and cultural backgrounds, and continents - and their family members and carers. Subsequently, the material was enriched by phenomenologically informed perspectives and shared with all collaborators. The inner subjective experience of adolescents is described for mood disorders, psychotic disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, anxiety disorders, eating disorders, externalizing disorders, and self-harm behaviors. The recollection of individuals' past histories also indexes the prodromal (often transdiagnostic) features predating the psychiatric diagnosis. The experience of adolescents with mental disorders in the wider society is described with respect to their family, their school and peers, and the social and cultural context. Furthermore, their lived experience of mental health care is described with respect to receiving a diagnosis of mental disorder, accessing mental health support, receiving psychopharmacological treatment, receiving psychotherapy, experiencing peer support and mental health activism, and achieving recovery. These findings can impact clinical practice, research, and the whole society. We hope that this co-designed, co-conducted and co-written journey can help us maintain our commitment to protecting adolescents' fragile mental health, and can help them develop into a healthy, fulfilling and contributing adult life.

Exploring perspectives of stigma and discrimination among people with lived experience of mental health conditions: a co-produced qualitative study.

Background: Efforts to understand the mechanisms and consequences of mental health-related stigma and discrimination need to center the perspectives of people affected by these negative impacts, through research efforts that are led or co-led by people with lived experience (PWLE) of mental health conditions. Methods: This study used co-production principles to explore global perspectives of stigma and discrimination among people meeting the inclusion criteria of identifying as PWLEs and being willing to share their experiences of stigma and discrimination resulting from a diagnosis of a mental health condition, and who had also participated in anti-stigma activities. Participants were recruited online via a self-selecting snowball sampling method. Qualitative data were collected from respondents via an anonymous global online survey conducted between 12/01/2021 and 02/28/2022. The main outcomes assessed were open-ended, qualitative responses to questions exploring experiences of stigma and discrimination, experiences regarding diagnoses, language/terminology related to mental health, impact of stigma and discrimination, and involvement with anti-stigma interventions. Data were synthesised through digital text network analysis and thematic content analysis. Findings: A total of 198 respondents from over 30 countries across Europe, the Americas, Africa, Asia, and Australia/Oceania were included in the study. The results reflected five themes: 1) the role of language and words; 2) the role of media in perpetuating and reducing stigma; 3) societal reactions to mental health conditions and strategies to cope with these; 4) knowledge about activities to reduce stigma and discrimination and their impact; and 5) personal involvement in activities to reduce stigma and discrimination. Interpretation: The findings highlight that people with mental health conditions are aware of and experience stigma and discrimination across core domains of daily life. The importance of recognising the key role PWLEs can play in efforts to reduce stigma and discrimination was highlighted, and how they can be appropriately supported to contribute and have their experiential expertise recognised. Meaningful and authentic collaborations between PWLEs and other stakeholders can enhance the quality and relevance of strategies to reduce stigma and discrimination. This is, to our knowledge, the first study of its kind to use a co-production approach to explore experiences and reflections of stigma and discrimination related to mental health from a global perspective. However, the results are not broadly representative of the general PWLE population or suggestive of globally uniform experiences of stigma and discrimination. Funding: None.

The lived experience of depression: a bottom-up review co-written by experts by experience and academics.

We provide here the first bottom-up review of the lived experience of depression, co-written by experts by experience and academics. First-person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of depression, family members and carers, representing a global network of organizations. The material was enriched by phenomenologically informed perspectives and shared with all collaborators in a cloud-based system. The subjective world of depression was characterized by an altered experience of emotions and body (feeling overwhelmed by negative emotions, unable to experience positive emotions, stuck in a heavy aching body drained of energy, detached from the mind, the body and the world); an altered experience of the self (losing sense of purpose and existential hope, mismatch between the past and the depressed self, feeling painfully incarcerated, losing control over one's thoughts, losing the capacity to act on the world; feeling numb, empty, non-existent, dead, and dreaming of death as a possible escape route); and an altered experience of time (experiencing an alteration of vital biorhythms, an overwhelming past, a stagnation of the present, and the impossibility of the future). The experience of depression in the social and cultural context was characterized by altered interpersonal experiences (struggling with communication, feeling loneliness and estrangement, perceiving stigma and stereotypes), and varied across different cultures, ethnic or racial minorities, and genders. The subjective perception of recovery varied (feeling contrasting attitudes towards recovery, recognizing recovery as a journey, recognizing one's vulnerability and the need for professional help), as did the experience of receiving pharmacotherapy, psychotherapy, and social as well as physical health interventions. These findings can inform clinical practice, research and education. This journey in the lived experience of depression can also help us to understand the nature of our own emotions and feelings, what is to believe in something, what is to hope, and what is to be a living human being.