Over 30 years of STEP: The Pittsburgh experience with first-episode psychosis.

AIMS: For over 30 years, combined research and treatment settings in the US have been critical to conceptualizing care for first-episode psychosis (FEP). Here we describe an early example of such a context, the Services for the Treatment of Early Psychosis (STEP) clinic, which is affiliated with the University of Pittsburgh. METHODS: We describe STEP's historical roots and establishment in the early 1990s; STEP's research and treatment contributions, alongside its growth and ongoing leadership. RESULTS: Research-based clinics, like STEP, preceded and helped pave the way for the Recovery After an Initial Schizophrenia Episode project in the US and the ensuing Coordinated Specialty Care (CSC) approach, now widely adopted in the US. Early clinic-based research at STEP helped establish protocols for psychopharmacology, the relevance of effective early treatment, including psychosocial approaches, and highlighted disparities in treatment outcomes across race/ethnicity. Multidisciplinary collaboration and dialogue with consumers contributed to early treatment, combining psychosocial and pharmacological approaches. STEP adopted CSC and is situated within a bi-state Learning Health System. STEP has retained a relatively unique 5-year treatment model and exists within continuum of care ideally suited to studying psychotic illness and treatment outcomes. CONCLUSIONS: STEP remains the largest academic FEP clinic in Pennsylvania. Academic FEP clinics like STEP will have a critical role within Learning Health Systems nationally to model participatory approaches, sustain early intervention treatment quality and ongoing treatment developments.

Using latent class analysis to investigate enduring effects of intersectional social disadvantage on long-term vocational and financial outcomes in the 20-year prospective Chicago Longitudinal Study.

BACKGROUND: Class and social disadvantage have long been identified as significant factors in the etiology and epidemiology of psychosis. Few studies have explicitly examined the impact of intersecting social disadvantage on long-term employment and financial independence. METHODS: We applied latent class analysis (LCA) to 20-year longitudinal data from participants with affective and non-affective psychosis (n = 256) within the Chicago Longitudinal Research. LCA groups were modeled using multiple indicators of pre-morbid disadvantage (parental social class, educational attainment, race, gender, and work and social functioning prior to psychosis onset). The comparative longitudinal work and financial functioning of LCA groups were then examined. RESULTS: We identified three distinct latent classes: one comprised entirely of White participants, with the highest parental class and highest levels of educational attainment; a second predominantly working-class group, with equal numbers of Black and White participants; and a third with the lowest parental social class, lowest levels of education and a mix of Black and White participants. The latter, our highest social disadvantage group experienced significantly poorer employment and financial outcomes at all time-points, controlling for diagnosis, symptoms, and hospitalizations prior to baseline. Contrary to our hypotheses, on most measures, the two less disadvantaged groups did not significantly differ from each other. CONCLUSIONS: Our analyses add to a growing literature on the impact of multiple forms of social disadvantage on long-term functional trajectories, underscoring the importance of proactive attention to sociostructural disadvantage early in treatment, and the development and evaluation of interventions designed to mitigate ongoing social stratification.

Service User Representation in Qualitative Research on Cognitive Health and Related Interventions for Psychosis: A Scoping Review.

BACKGROUND AND HYPOTHESIS: Cognitive health in schizophrenia spectrum psychosis has received substantial empirical attention in recent decades, coinciding with the development and implementation of interventions including cognitive remediation. Subjective experience in psychosis, including qualitative explorations of service user perspectives, has also proliferated; however, there is no available synthesis of service user representation in the psychosis cognitive health literature. This scoping review investigated prevalence and characteristics of qualitative research reporting service user perspectives across the extant research on cognitive health and related interventions in psychosis. STUDY DESIGN: We conducted a literature search on qualitative methods in cognitive health and/or related interventions across PubMed, Web of Science, and PsycInfo databases. The review followed the PRISMA-ScR guidelines for scoping reviews and identified 23 papers. Data extraction included study design and sample characteristics, qualitative methodology, and reporting. STUDY RESULTS: Of 23 articles, 18 reported on user experiences of interventions, most often in the context of feasibility/acceptability for otherwise quantitative trials. Five studies described service user experiences of cognitive health separately from interventions. Only 3 included any service user involvement or participatory methods. Twenty articles reported any demographic characteristics, and fewer than half (11) reported any racial or ethnic sample characteristics. There was substantial variability in qualitative methodology and reporting across studies. CONCLUSIONS: Qualitative methodology is lacking in its representation and rigor across the cognitive health literature for schizophrenia spectrum psychosis. Additional inclusion of service user lived experience is critical for future research to better characterize cognitive health and inform interventions to promote recovery.

A County-Level Case Study of Early Psychosis in the Context of a Hybrid Juvenile Competency Restoration and Mental Health Problem-Solving Court and Linkage to Coordinated Specialty Care Services.

An important and unresolved question in the context of the implementation of coordinated specialty care (CSC) for early psychosis in the United States is the extent to which youth and young adults from marginalized backgrounds are able to equitably access CSC services. In this brief report, we describe pathways between a county hybrid juvenile competency restoration and mental health problem-solving court ('Court'), serving youth with high rates of psychosis and multiple risk factors for poor long-term outcomes, and local CSC services. We found that the Court was overall successful in linking youth with psychosis to care, but in the majority of cases this was not CSC programming more specifically. Drawing on Court and CSC records as well as family interviews, we report on factors contributing to low linkage to CSC, including family-side barriers (lack of transportation, preference for lower intensity / lower demand services) and provider-side barriers, including eligibility criteria such as duration of psychosis, that ultimately exclude otherwise eligible Court-involved youth.

Use of Assistive Technology for Persons with Psychosocial Disability: Systematic Review.

BACKGROUND: Assistive technology (AT) refers to assistive products (AP) and associated systems and services that are relevant for function, independence, well-being, and quality of life for individuals with disabilities. There is a high unmet need for AT for persons with disabilities and this is worse for persons with cognitive and mental or psychosocial disabilities (PDs). Further, information and knowledge on AT for PDs is limited. OBJECTIVE: The aim of this review was to explore the pattern of AT use among persons with PDs and its associated socioeconomic and health benefits. METHODS: The review was reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), and we conducted systematic searches in the 4 databases: PubMed, Embase.com, APA PsycInfo (Ebsco), and Web of Science (Core Collection) with the following index terms: "Assistive Technology," "Self-Help Devices," "Quality of Life," "Activities of Daily Living," "Mental Disorders." We included only AT individuals with PDs can independently use without reliance on a provider. Identified papers were exported to EndNote (Clarivate) and we undertook a narrative synthesis of the included studies. RESULTS: In total, 5 studies were included in the review which reported use of different AT for schizophrenia, bipolar disorder, depression and anxiety disorders. The APs described in the included studies are Palm tungsten T3 handheld computer, MOBUS, personal digital assistant, automated pill cap, weighted chain blankets, and smartphone function. All the AT products identified in the studies were found to be easily usable by individuals with PDs. The APs reported in the included studies have broad impact and influence on social function, productivity, and treatment or management. The studies were heterogeneous and were all conducted in high-income countries. CONCLUSIONS: Our study contributes to and strengthens existing evidence on the relevance of AT for PDs and its potential to support socioeconomic participation and health. Although AT has the potential to improve function and participation for individuals with PDs; this review highlights that research on the subject is limited. Further research and health policy changes are needed to improve research and AT service provision for individuals with PDs especially in low-income settings. TRIAL REGISTRATION: PROSPERO CRD42022343735; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=343735.

Cycles of reform in the history of psychosis treatment in the United States.

The history of psychosis treatment follows a series of four cycles of reform which provide a framework for understanding mental health services in the United States. The first three cycles of reform promoted the view that early treatment of mental disorders would reduce chronic impairment and disability. The Moral Treatment era (early 1800's to 1890) featured freestanding asylums, the Mental Hygiene movement (1890 to World War II) introduced psychiatric hospitals and clinics, and the Community Mental Health Reform period (World War II to late 1970's) produced community mental health centers. None of these approaches succeeded in achieving the disability-prevention goals of early treatment of psychosis. The fourth cycle, the Community Support Reform era (late 1970's to the present) shifted the focus to caring for those already disabled by a mental disorder within their communities and using natural support systems. This shift embraced a broader social welfare framework and included additional services and supports, such as housing, case management, and education. Psychosis became more central during the current Community Support Reform era partly because individuals with psychosis continued to have disabling life experiences despite efforts at reform. Some degree of recovery from psychosis is possible, and individuals with serious impairment may move towards social integration and community participation. Early intervention for young people with psychosis focuses on reducing the negative sequelae of psychosis and promotes recovery-oriented changes in service delivery. The role of social control, the involvement of service users and their families, and the balance between psychosocial and biomedical treatments play an important role in this history. This paper describes the reform cycles, their political and policy contexts, and what influenced its successes and shortcomings.

Recovering the Vocational Self?: Service User Accounts of Barriers to Work and School and the Role of Early Psychosis Services in Supporting Career Development.

Vocational recovery is frequently identified as a primary goal of specialized early intervention in psychosis services (EIS). However, few studies have investigated the multi-level impacts of psychosis and its social sequelae on emerging vocational identities and mechanisms by which EIS may contribute to longer-term career development. The goal of this study was to deepen our understanding of the experiences of young adults with early psychosis during and following discharge from EIS as they relate to vocational derailment, identity and career development. We conducted in-depth interviews with 25 former EIS recipients and five family members (N = 30). Interviews were analyzed using modified grounded theory, with an orientation to generating a rich, theory informed understanding young people's experiences. Approximately half of the participants in our sample were not in employment, education, or training (NEET) and had applied for or were receiving disability benefits (SSI/SSDI). Among those participants who were working, the majority reported short-term, low-wage work. Thematic findings elucidate factors underlying the erosion of vocational identity, as well as ways in which both participant-reported vocational service characteristics and socioeconomic background shape different pathways to college, work and/or disability benefits both during and following discharge from EIS. Findings underscore the need for additional research on vocational identity among youth and young adults with early psychosis and the development and evaluation of interventions designed to support career development, address social and structural barriers to education and training, and foster long-term socioeconomic mobility.

Programmatic Support for Peer Specialists that Serve Transition Age Youth Living with Serious Mental Illness: Perspectives of Program Managers from Two Southern California Counties.

Peer Specialists (PS) often work in outpatient mental health programs serving transition age youth (TAY). This study examines program managers' perspectives on efforts to strengthen PS' professional development. In 2019, we interviewed program managers (n = 11) from two Southern California Counties employed by public outpatient mental health programs (n = 8) serving TAY and conducted thematic analyses. We present themes and illustrative quotes. PS' roles are highly flexible; thus, PM support PS to strengthen skills to address organization-facing and client-facing responsibilities. PM addressed time management, documentation, PS integration into the organization, and workplace relationships. Trainings to better support clients included addressing cultural competency to serve LGBTQ TAY and racial/ethnic subgroups. Diverse supervision modalities address PS' diverse needs. Supporting PS' technical and administrative skills (e.g., planning, interpersonal communication skills) may aid their implementation of a complex role. Longitudinal research can examine the impact of organizational supports on PS' job satisfaction, career trajectories, and TAY clients' engagement with services.

PERSPECTIVE: Forecasting the Future: Lived Experience and the Transformation of Mental Health Services Research in the United States.

Over the past two decades, consensus has emerged in WHO and other international organizations regarding the foundational role and importance of integrated service users - individuals with lived experience of mental health services and systems - into mental health clinical and services research. At present, support and infrastructure in the United States (US) lags behind many other high-income, Anglophone and Western European countries. This Perspective, originally part of the 2022 NIMH Mental Health Services Research Conference's "Forecasting the Future" plenary panel, makes the case for systematic and coordinated investment in the policy, funding, infrastructure and organizational change that would be necessary to substantively strengthen participatory and co-produced mental health services research in the US.

Trauma and Trauma-Informed Care in Early Intervention in Psychosis: State of Implementation and Provider Views on Challenges.

OBJECTIVE: Although trauma is increasingly recognized as a major risk factor for psychosis and for its link to treatment outcomes, the landscape of trauma-related practices in specialized early psychosis services in the United States and other countries remains only poorly characterized. Research documenting the perspectives of frontline providers is also lacking. The primary goals of this study were to document the state of trauma-related policy implementation in early intervention in psychosis (EIP) programs and to gather provider perspectives. METHODS: This was a mixed-methods project involving an international EIP provider survey, followed by in-depth provider interviews. The survey was disseminated in Australia, Canada, Chile, the United Kingdom, and the United States. In total, 164 providers, representing 110 unique sites, completed the survey. Frequencies were calculated for responses to survey items, and open-ended responses were analyzed with a systematic content analysis. RESULTS: The survey findings suggested low implementation rates for a variety of assessment and support practices related to trauma and trauma-informed care. Coding of open-ended responses revealed numerous concerns and uncertainties among providers regarding the relationship between trauma and psychosis and the state of the EIP field. CONCLUSIONS: An expansion of research and service development aimed at better meeting the trauma-related needs of young people with psychosis is essential, with implications for EIP outcomes and service user and staff experiences.

Barriers to Meaningful Participatory Mental Health Services Research and Priority Next Steps: Findings From a National Survey.

OBJECTIVE: A growing consensus has emerged regarding the importance of stakeholder involvement in mental health services research. To identify barriers to and the extent of stakeholder involvement in participatory research, the authors undertook a mixed-methods study of researchers and community members who reported participation in such research. METHODS: Eight consultative focus groups were conducted with diverse groups of stakeholders in mental health services research (N=51 unique participants, mostly service users), followed by a survey of service users, family members, community providers, and researchers (N=98) with participatory research experience. Focus groups helped identify facilitators and barriers to meaningful research collaboration, which were operationalized in the national survey. Participants were also asked about high-priority next steps. RESULTS: The barrier most strongly endorsed as a large or very large problem in the field was lack of funding for stakeholder-led mental health services research (76%), followed by lack of researcher training in participatory methods (74%) and insufficiently diverse backgrounds among stakeholders (69%). The two most frequently identified high-priority next steps were ensuring training and continuing education for researchers and stakeholders (33%) and authentically centering lived experience and reducing tokenism in research (26%). CONCLUSIONS: These findings suggest a need for increased attention to and investment in the development, implementation, and sustainment of participatory methods that prioritize collaboration with direct stakeholders, particularly service users, in U.S. mental health services research. The findings also underscore the presence and potentially important role of researchers who dually identify as service users and actively contribute a broader orientation from the service user-survivor movement.

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.

Changes in knowledge, behavioural expectations, self-efficacy, and stigma after an educational campaign about early psychosis for jail correction officers.

AIM: Given a lack of interventions to identify and engage individuals with early psychosis in jail and connect them to specialty care in the community upon release, we designed a Targeted Educational Campaign (TEC) for correction officers working in jails. We report on impacts of the TEC on officers' cognitive and attitudinal outcomes. METHODS: Three different cohorts of officers-totaling n = 451-took part in a survey: 200 at baseline before the TEC began, 123 at 6-months into the TEC, and 128 at 12-months into the TEC. Among each cohort of officers, four constructs were measured: (1) knowledge about early psychosis; (2) self-efficacy around detecting early psychosis and referring to mental health services within the jail; (3) expectations about the benefits of detection and referral to specialty care; and (4) social distance stigma toward detainees with early psychosis. RESULTS: While exposure to TEC elements was as-planned in the first 6-months, exposure diminished substantially at 12-months, coinciding with increasing fatigue among correction officers due to the COVID-19 pandemic as well as serious staffing shortages. Knowledge, behavioural expectations, and self-efficacy scores improved from baseline to 6-months, with greater exposure to roll-call messages driving scores. Knowledge and behavioural expectations at 12-months were associated with having received an information post card. Social distance stigma worsened across timepoints. CONCLUSIONS: An educational campaign for jail staff can enhance knowledge, self-efficacy, and behavioural expectations regarding early psychosis, though only while the campaign elements are active. Further research should investigate whether or not social distance stigma or other types of stigma increase alongside improvements.

Beyond Binary Narratives of Mental Health Advocacy: Latent Profiles of Mental Health Activists and Advocates With Lived Experience.

OBJECTIVE: In this article, the authors used data from a national survey of mental health activists and advocates (MHAAs) with lived experience of psychiatric disabilities to investigate attitudes toward psychiatric care. METHODS: The authors distributed a survey, developed by a team led by researchers who were also service users, to both mainstream and more critical advocacy groups and networks (N=547 participants), and they analyzed the data by using latent class analysis (LCA). Four survey variables regarding beliefs about involuntary hospitalization, assisted outpatient treatment, medication, and diagnosis were used to generate latent subgroups. The authors explored associations between key survey variables and latent classes with chi-square tests and analysis of variance. RESULTS: LCA indicated an optimal six-class solution. The classes existed on a spectrum of positions, ranging from highly favorable views of traditional psychiatric practices to highly critical views, with classes in the middle representing distinct profiles of attitudes toward treatment and diagnosis. Significant between-group differences were found for participants' psychiatric treatment histories, motivations to engage in activism and advocacy, and views about mental health care and advocacy priorities. CONCLUSIONS: Findings reveal considerable heterogeneity among MHAAs and challenge binary narratives of mental health advocacy.

Psychosis Outside the Box: A User-Led Project to Amplify the Diversity and Richness of Experiences Described as Psychosis.

Despite some progress toward greater inclusion, individuals with personal experience of psychosis are rarely integrated into the training of clinicians or knowledge generation. Their exclusion increases the risk that dominant ways of conceptualizing psychosis primarily reflect second- and third-person observations rather than first-person experiences. Observed only from the outside, the richness, complexity, and depth of experiences falling under the psychosis umbrella are easily lost. The authors describe a project-Psychosis Outside the Box-to solicit, compile, and amplify direct accounts of experiences that have been neglected in mainstream research and pedagogy, including the subjective experiences of visuals, felt presences, alterations of time and space, and "negative symptoms."

Strengthening Review and Publication of Participatory Mental Health Research to Promote Empowerment and Prevent Co-optation.

As reviewers, editors, and researchers with lived experience of mental health challenges, addiction, and/or psychosocial distress/disability, the authors have struggled to find an adequate way to address inappropriate or misleading use of the term "participatory methods" to describe research that involves people with lived experience in only a superficial or tokenistic manner. The authors of this article have found that, in their experience, editors or other reviewers often appear to give authors extensive leeway on claims of participatory methods that more accurately reflect tokenism or superficial involvement. The problem of co-optation is described, examples from the authors' experiences are given, the potential harms arising from co-optation are articulated, and a series of concrete actions that journal editors, reviewers, and authors can take to preserve the core intent of participatory approaches are offered. The authors conclude with a call to action: the mental health field must ensure that power imbalances that sustain epistemic injustice against people with lived experience are not worsened by poorly conducted or reported studies or by tokenistic participatory methods.

Embedding lived experience into mental health academic research organizations: Critical reflections.

BACKGROUND: As part of a growing emphasis on engaging people with lived experience of mental health conditions in mental health research, there are increasing calls to consider and embed lived experience throughout academic research institutes. This extends beyond the engagement of lay patients and also considers the potential roles of academic researchers with lived experience. When the lived experience of academic researchers is applied to academic work, there is the potential to improve the relevance of the research, while destigmatizing mental illness within academia. However, there are different and often contrasting perspectives on the way a lived experience academic researcher initiative should be implemented. OBJECTIVES: This article describes some of the key issues to be considered when planning an initiative that leverages and values the lived experience of academic researchers, including the advantages and disadvantages of each potential approach. DISCUSSION & RECOMMENDATIONS: Institutions are encouraged to reflect on the ways that they might support and value lived experience among academic researchers. In developing any such initiative, institutions are encouraged to be transparent about their objectives and values, undertake a careful planning process, involve researchers with lived experience from the outset and consistently challenge the stigma experienced by academic researchers with lived experience. PATIENT OR PUBLIC CONTRIBUTION: Multiple authors are academic researchers with lived experience of mental health conditions.