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.

Client and family experiences with telehealth-delivered early psychosis services.

OBJECTIVE: The COVID-19 pandemic prompted a significant shift to delivering early psychosis services using telehealth. Little is known about the experience of using telehealth in early psychosis services. This quality improvement qualitative project investigated the experiences of program participants and family members with telehealth services in OnTrackNY, an early intervention program for psychosis in New York State during the COVID-19 pandemic. METHODS: The project team conducted individual interviews and focus groups. Data analyses used a matrix approach. RESULTS: Nineteen OnTrackNY program participants and nine family members participated in five focus groups and nine individual interviews. Data were organized into five themes (a) accessibility: most individuals had a device and internet access and challenges were related to connectivity, such as image freezing and sound breaking; (b) convenience/flexibility: benefits included the reduced commute and costs; (c) levels of comfort/privacy with telehealth: program participants felt less judged and less anxiety leading up to in-person appointments while also expressing privacy concerns; (d) sense of connectedness: in-person social connections were deemed important and not replaceable by telehealth; and (e) suggestions: program participants expressed a preference for in-person group activities and suggested hybrid options, highlighting the importance of in-person visits to establish rapport at the beginning of treatment before transitioning to telehealth. CONCLUSIONS: Telehealth services were generally well accepted. Suggestions for future service delivery include offering a combination of telehealth and in-person services based on program participants' preferences and prioritizing in-person services during the early phase of treatment.

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.

"It's Tough to Be a Black Man with Schizophrenia": Randomized Controlled Trial of a Brief Video Intervention to Reduce Public Stigma.

BACKGROUND AND HYPOTHESIS: Racial discrimination and public stigma toward Black individuals living with schizophrenia create disparities in treatment-seeking and engagement. Brief, social-contact-based video interventions efficaciously reduce stigma. It remains unclear whether including racial identity experiences in video narrative yields greater stigma reduction. We hypothesized that we would replicate findings showing sustained stigma reduction in video-intervention groups vs control and that Black participants would show greater stigma reduction and emotional engagement than non-Black participants only for a racial-insights video presenting a Black protagonist. STUDY DESIGN: Recruiting using a crowdsourcing platform, we randomized 1351 participants ages 18-30 to (a) brief video-based intervention, (b) racial-insights-focused brief video, or (c) non-intervention control, with baseline, post-intervention, and 30-day follow-up assessments. In 2-minute videos, a young Black protagonist described symptoms, personal struggles, and recovery from schizophrenia, with or without mentioning race-related experiences. STUDY RESULTS: A 3 × 3 ANOVA showed a significant group-by-time interaction for total scores of each of five stigma-related domains: social distance, stereotyping, separateness, social restriction, and perceived recovery (all P < .001). Linear mixed modeling showed a greater reduction in stigma from baseline to post-intervention among Black than non-Black participants in the racial insights video group for the social distance and social restriction domains. CONCLUSIONS: This randomized controlled trial replicated and expanded previous findings, showing the anti-stigma effects of a brief video tailored to race-related experiences. This underscores the importance of personalized, culturally relevant narratives, especially for marginalized groups who, more attuned to prejudice and discrimination, may particularly value identification and solidarity. Future studies should explore mediators/moderators to improve intervention efficacy.

Stigma Reduction Via Brief Video Interventions: Comparing Presentations by an Actor Versus a Person With Lived Experience.

OBJECTIVE: This study aimed to compare the efficacy of two brief video interventions in reducing mental health-related stigma: one featuring a person with lived experience of mental illness, the other featuring an actor guided by focus groups of individuals with lived experience. METHODS: Participants (N=1,216) ages 18-30 were randomly assigned to an intervention group or a control group. The intervention groups viewed one of two 2-minute videos in which a young Black protagonist describes symptoms, struggles, and personal recovery related to schizophrenia. Five domains of stigma were assessed at baseline, postintervention, and a 30-day follow-up. RESULTS: Stigma scores were lower across all five domains in both intervention groups (vs. control), and noninferiority analyses found no difference between the two videos (all p<0.001). CONCLUSIONS: This study enhanced prior findings showing similar efficacy of the two videos and illustrated opportunities for people with mental illness to share their personal stories without public exposure.

Using focus groups to inform a brief video intervention to reduce public stigma toward Black youth living with psychosis.

Objective: Black individuals living with psychosis are at risk for stigma and marginalization due to systematic discrimination and barriers to receiving treatment. Social contact-based interventions have the potential to reduce stigma; however, interventions with elements specific to the experiences of Black youth are limited. Therefore, we aimed to gather input from Black youth living with psychosis to develop a social contact-based, brief video intervention to reduce public stigma toward Black youth with psychosis. Methods: Two 90-min focus groups were conducted with seven young Black individuals ages 18-30 with First Episode Psychosis from OnTrackNY. Participants were asked about their experiences of stigma and racial discrimination, and their perspectives on a video intervention. Focus group transcripts were analyzed using thematic content analysis. Results: Themes that emerged included: the salience of stigma and racial experiences for some participants and not others; the linking of religiosity and symptoms in Black communities; the importance of taking responsibility for recovery as a coping strategy to counteract stigma; and mixed views on creating a video intervention specific to Black youth. Conclusion: Meaningful and empowering involvement of individuals with lived experience of psychosis is essential to create stigma reducing interventions. Input from Black youth living with psychosis assisted in developing a culturally tailored brief video-based intervention to reduce public stigma toward Black youth with psychosis that included information about the protagonist's experience of race and mental illness, specifically family, religious, and community-based experiences.

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.

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.

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."

Selfie Videos to Reduce Stigma and Increase Treatment Seeking Among Youths: Two Noninferiority Randomized Controlled Trials.

OBJECTIVE: Confronting stigma early in life could enhance treatment seeking. In two randomized controlled trials (RCTs), one focused on psychosis and the other on adolescent depression, the efficacy and equivalence of brief social contact-based videos were evaluated and compared with a control condition. The outcomes of interest were changes in illness-related stigma and treatment-seeking intention. The hypotheses were that the intervention videos would show greater efficacy than control conditions and that traditional and selfie videos would demonstrate similar efficacy. METHODS: Young adults (study 1, N=895) and adolescents (study 2, N=637) were randomly assigned to view intervention videos (in traditional or selfie styles) or to a control condition. In short videos (58-102 seconds), young presenters humanized their illness by emotionally describing their struggles and discussing themes of recovery and hope. RESULTS: Repeated-measures analyses of variance and paired t tests showed significant differences in stigma and treatment seeking between the intervention and control groups and similar efficacy of the traditional and selfie videos. Cohen's d effect sizes ranged from 0.31 to 0.76 for changes in stigma from baseline to 30-day follow-up in study 1 and from 0.13 to 0.47 for changes from baseline to postintervention in study 2. CONCLUSIONS: The RCTs demonstrated the efficacy of brief videos, both traditional and selfie, in reducing illness-related stigma among young adults and adolescents and in increasing treatment-seeking intention among adolescents. Future studies should explore the effects of brief videos presented by social media influencers on mental health stigma and treatment engagement.

"Everything Changed, Would You Like Me to Elaborate?": A Qualitative Examination of the Impact of the COVID-19 Pandemic on Community Participation Among Young Adults with Early Psychosis and Their Families.

OnTrackNY provides early intervention services to young people with early psychosis throughout New York State. This report describes the impact of the COVID-19 pandemic on community participation of OnTrackNY program participants and their families. Thirteen participants and nine family members participated in five focus groups and three individual semi-structured interviews. Data were analyzed using a summary template and matrix analysis approach. Major themes highlight the negative impacts of the pandemic with reports of decreased socializing or using online means to connect, unemployment, challenges with online learning and a decrease in civic engagement. Positive impacts include more time to deepen connections with family and valued friendships and engage in activities that promote wellness and goal attainment. Implications for coordinated specialty care programs include adapting services to promote mainstream community integration and creating new strategies for community involvement of young people within a new context brought forth by the pandemic.

"It Is Hard to Be a Woman With Schizophrenia": Randomized Controlled Trial of a Brief Video Intervention to Reduce Public Stigma in Young Adults.

Objective: Women with schizophrenia encounter specific gender-related stressors that may affect their recovery process. They are more susceptible to victimization and tend to experience more shame and stigma about their illness. Confronting stigma early in the illness could enhance treatment seeking. No studies have examined the efficacy of stigma-reducing interventions focused on public stigma toward women living with schizophrenia or have tested the effect of gender-specific content therein.Methods: We compared the efficacy at post-intervention and 30-day follow-up of 2 brief (~80-second) videos, with and without gender-related content, and a non-intervention control, in 1,181 young adults, between September and November 2021. The videos feature an empowered young woman living with schizophrenia who describes struggling with her psychotic illness to attain recovery and hope.Results: A 3 × 3 group-by-time analysis of variance showed decreased mean stigma scores over time in the two intervention arms relative to controls across all 5 public stigma domains: social distance (F = 17.1, P < .001), stereotyping (F = 25.0, P < .001), separateness (F = 8.3, P < .001), social restriction (F = 16.6, P < .001), and perceived recovery (F = 7.8, P < .001). Linear mixed modeling showed a greater intervention effect for women in the gender-related video group in social distance, stereotyping, and separateness.Conclusions: Greater stigma reduction among women in the gender-related video group underscores the importance of tailoring the narrative to specific experiences related to socio-demographic characteristics, especially among members of marginalized groups. This attenuation may result in greater identification and solidarity with the presenter. Future studies should explore other socially oppressed groups, including Black, Latinx, Asian, and LGBTQ+ communities.

Reducing public stigma toward individuals with psychosis across race and gender: A randomized controlled trial of young adults.

BACKGROUND: Social contact-based interventions effectively reduce stigma toward psychosis. We recently demonstrated the efficacy of a 90-second video intervention in reducing stigma. The current randomized controlled study presents four briefer videos differing in presenter's gender/race, with baseline, postintervention, and 30-day follow-up assessments. The study replicates previous findings and examine whether concordance of presenter's and viewer's race/gender enhanced the anti-stigma effect. METHODS: Using a crowdsourcing platform, we recruited 1993 participants ages 18-35 years to one of four brief video-based interventions (Black/White female, Black/White male presenters) or a nonintervention control condition. In the videos, a young presenter with psychosis humanized their illness through an evocative description of living a meaningful and productive life. RESULTS: Group-by-time ANOVA showed a significant group-by-time interaction for the total score of all five stigma domains: social distance, stereotyping, separateness, social restriction, and perceived recovery. One-way ANOVA showed greater reductions in video intervention groups than control at post-intervention and 30-day follow-up, but no differences between video groups. Matching race/gender did not further reduce stigma. CONCLUSIONS: This randomized controlled study replicated and extended previous research findings, by showing stigma reduction across videos that differ in the presenter's gender and race, thus enhancing generalizability. The videos described the experience of psychosis and reduced stigma, suggesting their potential utility on social media platforms to increase the likelihood of seeking services and ultimately may improve access to care among young individuals with psychosis. Future research should address intersectional stigma experiences by focusing on race/gender and culturally tailoring the narrative.