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.

Transforming mental health systems globally: principles and policy recommendations.

A burgeoning mental health crisis is emerging globally, regardless of each country's human resources or spending. We argue that effectively responding to this crisis is impeded by the dominant framing of mental ill health through the prism of diagnostic categories, leading to an excessive reliance on interventions that are delivered by specialists; a scarcity of widespread promotive, preventive, and recovery-oriented strategies; and failure to leverage diverse resources within communities. Drawing upon a series of syntheses, we identify five principles to transform current practices; namely, address harmful social environments across the life course, particularly in the early years; ensure that care is not contingent on a categorical diagnosis but aligned with the staging model of mental illness; empower diverse front-line providers to deliver psychosocial interventions; embrace a rights-based approach that seeks to provide alternatives to violence and coercion in care; and centre people with lived experience in all aspects of care. We recommend four policy actions which can transform these principles into reality: a whole of society approach to prevention and care; a redesign of the architecture of care delivery to provide a seamless continuum of care, tailored to the severity of the mental health condition; investing more in what works to enhance the impact and value of the investments; and ensuring accountability through monitoring and acting upon a set of mental health indicators. All these actions are achievable, relying-for the most part-on resources already available to every community and country. What they do require is the acceptance that business as usual will fail and the solutions to transforming mental health-care systems are already present within existing resources.

Cracks that Let the Light in: Collective Reflections on Integrating Lived Experience of Psychosis in Research and Policy in the Context of a Global Commission.

Within psychiatric research fields, there has been a marked uptick of interest in service user involvement in recent years. Nevertheless, it is often unclear how robust or impactful common forms of inclusion are, and the extent to which they have included individuals with psychosis. Using collective auto-ethnography, this paper describes the experiences of 8 academic and non-academic members of the 'lived experience' and participatory research workgroup of a global psychosis Commission and our navigation of power and power hierarchies, differences in background and training, and multiple vectors of identity, diversity, and privilege. We conclude that the realities of "involvement" are much messier, more fraught, and less intrinsically empowering than often signaled in calls for involvement and co-production. We nevertheless stress the power of collective dialogue and support-between and among a pluralistic group-and of honesty and transparency about challenges, barriers, and the colonial underpinnings and geopolitics of global mental health.

The Lived Experiences of Family Members and Carers of People with Psychosis: A Bottom-Up Review Co-Written by Experts by Experience and Academics.

Informal caregivers of individuals affected by psychotic disorder can play a key role in the recovery process. However, little research has been conducted on the lived experiences of carers and family members. We conducted a bottom-up (from lived experience to theory) review of first-person accounts, co-written between academics and experts by experience, to identify key experiential themes. First-person accounts of carers, relatives, and individuals with psychosis were screened and discussed in collaborative workshops involving individuals with lived experiences of psychosis, family members, and carers, representing various organizations. The lived experiences of family members and carers were characterized by experiential themes related to dealing with the unexpected news, the search for a reason behind the disorder, living with difficult and negative emotions, dealing with loss, feeling lost in fragmented healthcare systems, feeling invisible and wanting to be active partners in care, struggling to communicate with the affected person, fighting stigma and isolation, dealing with an uncertain future, and learning from one's mistakes and building resilience and hope. Our findings bring forth the voices of relatives and informal carers of people with psychosis, by highlighting some of the common themes of their lived experiences from the time of the initial diagnosis and throughout the different clinical stages of the disorder. Informal carers are key stakeholders who can play a strategic role, and their contributions in the recovery process merit recognition and active support by mental health professionals.

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

Psychosis is the most ineffable experience of mental disorder. We provide here the first co-written bottom-up review of the lived experience of psychosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically-informed perspectives. First-person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations. The material was complemented by semantic analyses and shared across all collaborators in a cloud-based system. The early phases of psychosis (i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to be denoted by some transitory relief associated with the onset of delusions, intense self-referentiality and permeated self-world boundaries, tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood as an enduring journey of reconstructing the sense of personhood and re-establishing the lost bonds with others towards meaningful goals. These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences, so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.

Perspectives: involving persons with lived experience of mental health conditions in service delivery, development and leadership.

Globally, there has been an emphasis on the importance and value of involving people with lived experience of mental health conditions in service delivery, development and leadership. Such individuals have taken on various roles, from peer support specialists and other specialised professions to leadership in mainstream industries. There are, however, still obstacles to overcome before it is possible to fully include people with lived experience at all levels in the mental health and related sectors. This article discusses the benefits, both to the individual and to the public, of involving persons with lived experience in service delivery, development and leadership.

Accountability for the Rights of People with Psychosocial Disabilities: An Assessment of Country Reports for the Convention on the Rights of Persons with Disabilities.

The Convention on the Rights of Persons with Disabilities (CRPD) has been identified as a milestone in human rights protection, offering people with psychosocial disabilities the opportunity to hold their governments accountable for the realization of their rights. To facilitate such accountability, the country reports produced under the CRPD reporting process should adequately reflect these persons' experiences and relevant positive or negative developments in the country. Our study used content analysis to review the extent and quality of reporting related to mental health and psychosocial disabilities in 19 country reports. The criteria used were based on provisions of the CRPD and on priorities identified by a steering committee of people with psychosocial disabilities. We found a wide variation in the quantity and quality of states' reporting, with an indication that this variation relates to countries' economic development. Increasing the participation of representative organizations of people with psychosocial disabilities is needed for state parties to fulfill their reporting obligations. While there has been progress in improving organizations of persons with disabilities capacity to be heard at the global level, our findings suggest low levels of participation in CRPD processes at the national level in many countries. State parties must actively include these groups to ensure implementation of the CRPD principles.

COVID-19 mental health impact and responses in low-income and middle-income countries: reimagining global mental health.

Most of the global population live in low-income and middle-income countries (LMICs), which have historically received a small fraction of global resources for mental health. The COVID-19 pandemic has spread rapidly in many of these countries. This Review examines the mental health implications of the COVID-19 pandemic in LMICs in four parts. First, we review the emerging literature on the impact of the pandemic on mental health, which shows high rates of psychological distress and early warning signs of an increase in mental health disorders. Second, we assess the responses in different countries, noting the swift and diverse responses to address mental health in some countries, particularly through the development of national COVID-19 response plans for mental health services, implementation of WHO guidance, and deployment of digital platforms, signifying a welcome recognition of the salience of mental health. Third, we consider the opportunity that the pandemic presents to reimagine global mental health, especially through shifting the balance of power from high-income countries to LMICs and from narrow biomedical approaches to community-oriented psychosocial perspectives, in setting priorities for interventions and research. Finally, we present a vision for the concept of building back better the mental health systems in LMICs with a focus on key strategies; notably, fully integrating mental health in plans for universal health coverage, enhancing access to psychosocial interventions through task sharing, leveraging digital technologies for various mental health tasks, eliminating coercion in mental health care, and addressing the needs of neglected populations, such as children and people with substance use disorders. Our recommendations are relevant for the mental health of populations and functioning of health systems in not only LMICs but also high-income countries impacted by the COVID-19 pandemic, with wide disparities in quality of and access to mental health care.

Psychological impact and psychosocial consequences of the COVID 19 pandemic Resilience, mental well-being, and the coronavirus pandemic.

Since December 2019, the coronavirus (COVID19) outbreak has impacted everyone's daily lives globally, especially those experiencing mental health issues. The well-being and mental healthcare of patients, families, and health-care professionals who have been directly or indirectly affected by this pandemic has not been well addressed. Governments have asked their citizens to take actions, some of which include making sacrifices that may result in dignity violations and moral injury, a term originating in the military to describe the psychological distress that results from actions, or the lack of them, which violate a person's moral or ethical code. Health professionals, individuals, and communities have changed their way of life and working to decrease coronavirus infectivity, causing additional stress and increasing potential for moral injury. It is important to hear the first-hand experience of people affected to understand the new psychosocial stressors that they face in their day to day lives and what they found helpful in managing these. This global survey carried out by the World Dignity Project in collaboration with the Global Mental Health Peer Network is to ensure that the voices of people with lived experience of mental health, their families, and professionals that work with them are heard. AIMS: To understand the impact of the coronavirus pandemic on mental health, well-being, and dignity, what has helped and what lessons can be learned to support coping in future. MATERIALS AND METHODS: Online qualitative and quantitative survey (April 15-June 15, 2020)Participants gave narrative responses to several questions, posting photos or images. ANALYSIS: Narrative responses were analyzed using the Gioia approach, a systematic inductive approach to develop concepts that help make sense of socially constructed worlds. Visual ethnographic data was used to give insight into the participant's socio-cultural context.