Three Things We Learned Along the Way: lessons for training in psychiatric epidemiology.

The COVID-19 pandemic, and its associated mortality, morbidity, deep social and economic impacts was a global traumatic stressor that challenged population mental health and our de-facto mental health care system in unprecedented ways. Yet in many respects, this 'crisis' is not new. Psychiatric epidemiologists have recognized for decades the need and unmet need of people in distress and the limits of the public mental health services in the United States. We argue that psychiatric epidemiologists have a critical role to play as we endeavor to address population mental health and draw attention to three areas of consideration: the need to elevate population based solutions; engaging equitably with lived experience; and interrogating recovery. Psychiatric epidemiology has a long history of both responding to and shaping our understandings of the relationships among psychiatric disorders and society through evolving methods and training, and the current socio-historical moment again suggests that shifts in our practice can strengthen our field and its impact.

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.

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.

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.

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.

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.

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.

Investigating the impact of involuntary psychiatric hospitalization on youth and young adult trust and help-seeking in pathways to care.

PURPOSE: Few studies have focused on the experience of involuntary psychiatric hospitalization among youth, especially the impact of these experiences on engagement with mental health services post-discharge. In this study, we contribute to a deeper understanding of youth experiences of involuntary hospitalization (IH) and its subsequent impacts on trust, help-seeking, and engagement with clinicians. METHODS: The study utilized a grounded theory approach, conducting in-depth interviews with 40 youth and young adults (ages 16-27) who had experienced at least one prior involuntary hospitalization. RESULTS: Three quarters of the youth reported negative impacts of IH on trust, including unwillingness to disclose suicidal feelings or intentions. Selective non-disclosure of suicidal feelings was reported even in instances in which the participant continued to meet with providers following discharge. Factors identified as contributing to distrust included perceptions of inpatient treatment as more punitive than therapeutic, staff as more judgmental than empathetic, and hospitalization overall failing to meet therapeutic needs. Conversely, participants reporting more mixed experiences of hospitalization and simultaneously strong indirect benefits, including greater family support, diminished family judgement members and greater access to care. CONCLUSION: Findings draw attention to the ways in which coercive experiences may impact youth pathways to and through care. Additional research is needed to understand the impact of these experiences across larger samples, and their influence on downstream outcomes including engagement and long-term wellbeing. Finally, these data may inform the development and testing of inpatient and post-discharge interventions designed to mitigate potential harm.

The Availability of Peer Support and Disparities in Outpatient Mental Health Service Use Among Minority Youth with Serious Mental Illness.

We examine whether the availability of peer support reduces disparities in service use among minority youth ages 16-24 with serious mental illness in Los Angeles and San Diego Counties. Administrative data from 2015-2018 was used to summarize service use among 13,363 transition age youth age 16-24 with serious mental illness who received services from 183 outpatient public mental health programs; 17.2% were Black, 67.4% were Latinx, and 15.4% were non-Latinx white. The availability of peer support was assessed via a program survey. Generalized linear models were used to assess the relationship between availability of peer support, defined as having a peer specialist on staff, and the annual number of outpatient mental health visits. We also examined the relationship between racial/ethnic concordance of youth and peer specialists and use of outpatient services. Forty-six percent of youth received services from programs that employed peer specialists. Among youth in both counties, the availability of peer support was associated with an increase in annual outpatient visits (P ≤ .05 each). Peer support was associated with reductions in service use disparities among Black and Latinx youth in Los Angeles County (P < .001 each). Peer concordance was associated with an increase in outpatient service use among Latinx youth in both counties (P < .05 each). Peer support was associated with increases in use of outpatient mental health services. Detailed examination of the context for youth peer support implementation is merited to identify the specific pathways that improve outcomes.

Organizational Climate and Support Among Peer Specialists Working in Peer-Run, Hybrid and Conventional Mental Health Settings.

As the peer specialist workforce continues to expand, it is critical to better understand peer providers' working conditions and workplace experiences. The current study utilized a targeted non-probability sample of 801 peer specialists to explore whether key organizational climate and support variables would yield distinct multivariate groups, and to investigate the correlates of these groups. Analyses yielded a seven-group solution, with peer run organizations comprising a substantially greater proportion of the groups with high organizational climate and support scores. In direct comparisons, peer-run programs outranked all other groups in the areas of perceived organizational climate, supports for career development and perceived service quality.

Immersion in altered experience: An investigation of the relationship between absorption and psychopathology.

Understanding alterations in perceptual experiences as a component of the basic symptom structure of psychosis may improve early detection and the identification of subtle shifts that can precede symptom onset or exacerbation. We explored the phenomenological construct of absorption and psychotic experiences in both clinical (bipolar psychosis and schizophrenia spectrum) and non-clinical participants. Participants with psychosis endorsed significantly higher absorption compared to the non-clinical group. Absorption was positively correlated with all types of hallucinations and multiple types of delusions. The analysis yielded two distinct cluster groups that demarcated a distinction along the continuum of self-disturbance: on characterized by attenuated ego boundaries and the other stable ego boundaries. The study suggests that absorption is a potentially important but under-researched component of psychosis that overlaps with, but is not identical to the more heavily theorized constructs of aberrant salience and hyperreflexivity.

EAWE: Examination of Anomalous World Experience.

The "EAWE: Examination of Anomalous World Experience" is a detailed semi-structured interview format whose aim is to elicit description and discussion of a person's experience of various aspects of their lived world. The instrument is grounded in the tradition of phenomenological psychopathology and aims to explore, in a qualitatively rich manner, six key dimensions of subjectivity - namely, a person's experience of: (1) Space and objects, (2) Time and events, (3) Other persons, (4) Language (whether spoken or written), (5) Atmosphere (overall sense of reality, familiarity, vitality, meaning, or relevance), and (6) Existential orientation (values, attitudes, and worldviews). The EAWE is based on and primarily directed toward experiences thought to be common in, and sometimes distinctive of, schizophrenia spectrum conditions. It can, however, also be used to investigate anomalies of world experience in other populations. After a theoretical and methodological introduction, the EAWE lists 75 specific items, often with subtypes, in its six domains, together with illustrative quotations from patients. The EAWE appears in a special issue of Psychopathology that also contains an orienting preface (where the difficulty as well as necessity of studying subjective life is acknowledged) and a brief reliability report. Also included are six ancillary or background articles, which survey phenomenologically oriented theory, research, and clinical lore relevant to the six experiential domains.

Listening to Schneiderian Voices: A Novel Phenomenological Analysis.

BACKGROUND/AIMS: This paper reports on analyses designed to elucidate phenomenological characteristics, content and experience specifically targeting participants with Schneiderian voices conversing/commenting (VC) while exploring differences in clinical presentation and quality of life compared to those with voices not conversing (VNC). METHODS: This mixed-method investigation of Schneiderian voices included standardized clinical metrics and exploratory phenomenological interviews designed to elicit in-depth information about the characteristics, content, meaning, and personification of auditory verbal hallucinations. RESULTS: The subjective experience shows a striking pattern of VC, as they are experienced as internal at initial onset and during the longer-term course of illness when compared to VNC. Participants in the VC group were more likely to attribute the origin of their voices to an external source such as God, telepathic communication, or mediumistic sources. VC and VNC were described as characterological entities that were distinct from self (I/we vs. you). We also found an association between VC and the positive, cognitive, and depression symptom profile. However, we did not find a significant group difference in overall quality of life. CONCLUSIONS: The clinical portrait of VC is complex, multisensory, and distinct, and suggests a need for further research into the biopsychosocial interface between subjective experience, socioenvironmental constraints, individual psychology, and the biological architecture of intersecting symptoms.

What is the impact of self-stigma? Loss of self-respect and the "why try" effect.

BACKGROUND: The "Why Try" phenomenon, a consequence of self-stigma, is a sense of futility that occurs when people believe they are unworthy or incapable of achieving personal goals because they apply the stereotypes of mental illness to themselves. AIMS: This study examines a four-stage model of self-stigma (aware, agree, apply, and self-stigma harm) and examines the "why try" effect as a result. We do that by testing a measure of "why try." METHOD: Two hypothetical path models were tested. In the first, applying stereotypes to oneself leads to diminished self-respect and a sense of "why try". In the second, the effect of applying stereotypes on "why try" is mediated by diminished self-respect. Participants completed the "why try" measure along with measures of self-stigma, public stigma, recovery, and empowerment. RESULTS: Results show application of stereotypes to oneself predicts diminished self-respect and "why try". "Why try" was significantly associated with agreement with public stigma, depression, and diminished sense of personal recovery. CONCLUSIONS: Findings from this study reveal the complex impact of self-stigma demonstrating its emotional and behavioral consequences. Implications for impacting self-stigma are discussed.

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.

From Rhetoric to Action: Justice, Equity, Diversity, and Inclusion in Coordinated Specialty Care for Early Psychosis.

Attention to inclusivity and equity in health research and clinical practice has grown in recent years; however, coordinated specialty care (CSC) for early psychosis lags in efforts to improve equity despite evidence of ongoing disparities and inequities in CSC care. This Open Forum argues that marginalization and disparities in early psychosis research and clinical care are interrelated, and the authors provide suggestions for paths forward. Commitment to equity and justice demands recentering the perspectives of those most affected by early psychosis services and investing in the integration of historically excluded perspectives across all aspects of practice, policy, and research.

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.