Structural Disadvantage and Culture, Race, and Ethnicity in Early Psychosis Services: International Provider Survey

Over the past decade, specialized early intervention in psychosis (EIP) services have expanded substantially, supported by national initiatives in a growing number of countries (1). Research studies have consistently found positive impacts of EIP on multiple domains, including significant improvements in clinical and functional recovery at the time of discharge (2). Neither positive outcomes nor sustained engagement is universal, however, and a growing body of work has found that adversity, structural disadvantage, and racial-ethnic discrimination predict poorer outcomes and service disengagement (3–6).

A substantial body of research suggests that structural disadvantages (e.g., poverty and residential segregation) and culture-related adversities (e.g., migration, asylum, and racial profiling) heighten the risk for developing psychotic symptoms (7–13). Independently of psychosis, these adverse experiences are widely considered to be risk factors for educational underattainment, unemployment, poor general medical health, and incarceration (14–17). Furthermore, within the broader psychosis literature, poverty and minority race-ethnicity have been found to be associated with disparities in access to and quality of care (18, 19), including higher rates of involuntary hospitalization (20, 21) and disability (22, 23). Recent studies also suggest that both the form and the content of psychotic symptoms, including auditory hallucinations, can be shaped by adverse experiences as well as by culture and race-ethnicity, sometimes in ways that render these experiences more distressing (24–27).

Although contemporary epidemiology has helped dispel myths about schizophrenia as an “equal opportunity” disorder that equally affects young people of all classes (28), schizophrenia does emerge across socioeconomic lines, albeit not at equal rates. EIP programs, particularly programs with no income-based eligibility restrictions, therefore serve a heterogeneous mix of clients, all with early psychosis but some with multiple additional cultural, socioeconomic, and structural challenges.

In recent years, the EIP research community has begun to innovate and expand its research base in the areas of trauma-related services (29–32), cultural assessment and adaptation (33, 34), and intervention focused on poverty and unemployment (9, 35, 36). Specific examples include therapies tailored to treat trauma in early psychosis (29, 30), cultural adaptation of therapies for psychosis (33), and development of an EIP service explicitly focused on unstably housed youths (36). Compared with many other areas of EIP treatment, however, interventions in these areas remain underdeveloped. In addition, little is known about the international landscape of EIP implementation in these practice areas, particularly in community-based clinics, and about the concerns of frontline clinicians, in particular those operating outside academic research settings.

To better understand the gaps in the literature described above, we developed a mixed-methods project to explore the current international implementation landscape of EIP policies and practices relevant to disadvantage and cultural competency. We also sought to elucidate providers’ views on the role and impact of disadvantage and culture, promising or innovative practices and strategies, and challenges, concerns, and unmet needs in program engagement and service-related outcomes.

Methods

Study Design

Our mixed-methods design was conducted in three phases. First, we conducted informal EIP provider interviews to develop an initial provider survey and accompanying qualitative interview protocol. The survey was then vetted and finalized by an independent group of EIP providers. The survey was disseminated online and was active between September 2017 and January 2019. We also conducted in-depth follow-up interviews to deepen our understanding of survey findings (interviews will be reported on in a separate study). Recruitment methods included e-mails sent to all program directors publicly listed in national and international directories and flyers disseminated via national and regional early psychosis Listservs.

Participants

The survey targeted providers working in specialized EIP services; 164 participants completed the survey and were included in the analyses. Participants represented programs in 110 unique cities or catchment areas (e.g., National Health Services Trusts) in the United States, United Kingdom, Canada, Australia, and Chile.

Survey Items and Measures

The survey gathered demographic data of participants, including age, race-ethnicity, gender, highest degree completed, and program role. Program variables reported by participants were program location, model followed, and inclusion of peer workers, vocational specialists, and family peers or partners. To assess disadvantage-related policies and practices, the survey included yes-or-no questions regarding integration of formal assessment of trauma or adversity and about integration of policies focused on trauma-informed care. To assess culture-related policies and practices, the survey included yes-or-no questions about integration of formal cultural assessment tools, training focused on culture and early psychosis, programmatic changes made in response to culture-related issues, and consultation with cultural insiders with respect to both individual clients and the program more broadly. Six open-ended questions were included regarding the demographic mix of the program’s client population, the role and influence of trauma, structural disadvantage, and cultural differences, and concerns and needs related to these topics. (The exact text of all survey items discussed here is available in an online supplement to this article.)

Analysis

Closed-ended questions.

Quantitative variables were exported from Qualtrics into Stata, version 15. A minimum “unique location count” of programs was generated on the basis of self-reported program name, city, state, province, or region. Frequencies were computed for roles and key program policy and practice variables, and distributions were examined by country.

Open-ended questions.

Open-ended responses were imported into Atlas.ti qualitative software for analysis. We adopted a systematic content analysis approach with the goal of comprehensively coding all open-ended responses (37). Both a priori and emergent codes were used; examples of a priori codes included codes directly tied to survey questions (e.g., “higher disengagement attributed to low socioeconomic status” and “higher disengagement attributed to minority race-ethnicity”). Emergent codes reflected areas and topics identified through open coding—for example, “ethnocentric bias in underlying EIP frameworks.” The codebook was developed through an initial open-coding round with a subset of the data, refined and tested in a new sample, and finalized. After formal reliability checks were conducted (κ=0.85), remaining survey responses were coded. As an additional safeguard that ensured that no relevant codes were missed, systematic keyword searches were conducted. This process yielded only a very small number of additions or corrections.

Results

Sample

Participant program affiliations, roles, and demographic characteristics are listed in Table 1. Overall, the 164 participants represented 110 unique EIP locations (i.e., cities, towns, or health service regions), including one site in Chile, 18 in the United Kingdom (including England, Scotland, and Northern Ireland), 10 in Canada (primarily in Ontario and Quebec), four in Australia, and 77 in the United States. To put these numbers in context, at the time the survey was completed, an estimated 254 programs existed in the United States, six in Australia, 60 trusts or boards with EIP services in the United Kingdom, 80 sites in Canada, and one site in Chile (38–44). Penetration by country thus ranged from 100% in Chile and 60% in Australia, to 30% in the United States, 30% in the United Kingdom, and 13% in Canada.

Closed-Ended Responses

Frequencies and percentages for role and policy and practice variables are reported for unique program locations by country in Table 2, along with omnibus (i.e., Fisher’s exact test) significance analyses. Overall, policies and practices related to adversity and cultural diversity were present in only a minority of programs, with significant variation in overall rates by country.

Open-Ended Responses

Qualitative findings were organized into four sections: program populations, role and impact of disadvantage and cultural difference, emergent strategies and promising practices, and perceived challenges, concerns, and unmet needs. Denominators reflected the number of respondents to the applicable open-ended question, which ranged from 88 to 132. Where denominators would not make sense (as in themes derived from multiple questions with varying response rates), we provide a straight frequency count. Note that because these were open-ended responses, our analysis could include only the textual responses provided by participants. The absence of a response does not necessarily mean that any given participant disagreed with the sentiments others expressed.

Program populations.

In total, 99 of 132 (75%) of respondents described their programs as serving significant numbers of clients from ethnic-racial minority communities or structurally and economically disadvantaged communities. Many respondents emphasized that disadvantage and culture intersect, particularly in the context of refugees, asylum seekers, and historically marginalized indigenous populations. As might be expected, the demographic factors of minority populations varied enormously by site and region, with “Travelers” (i.e., itinerant groups, such as Irish Travelers or Romany gypsies) referenced only in the United Kingdom and indigenous-aboriginal clients referenced primarily in Canada and Australia. In the United States, large African American or Latinx populations were the most common minority constituencies.

Role and impact of disadvantage and cultural difference.

The overwhelming majority of respondents described impacts of disadvantage and cultural difference on program engagement and service-related outcomes. Example quotations for each major area are provided in Table 3.

Overarching Impacts on Program Benefits and Engagement

With respect to program disengagement, 65% (82 of 126) of respondents (83% of those in programs with substantial minority or disadvantaged populations) reported higher rates of treatment disengagement tied to race, ethnicity, culture, or disadvantage. Specific populations mentioned varied by participant and included clients from aboriginal or indigenous communities, Blacks of African origin, Latino and Latina groups in the United States, Travelers in the United Kingdom, refugees and asylum seekers, and those experiencing socioeconomic hardship. Twenty-seven participants specifically described higher rates of family disengagement, particularly among recent immigrants and specific cultural minority communities subject to a history of marginalization or exclusion within the region in question.

Moreover, 59% (78 of 132) of participants described poverty or socioeconomic disadvantage as factors that made it significantly more difficult, even for clients and families who remained with the program, to fully benefit from interventions; 77% (96 of 124) said the same of particular racial-ethnic or cultural minority groups, with many underscoring the intersectionality of culture and disadvantage. With respect to poverty, participants cited the need to prioritize basic needs over participation in more psychological interventions, as well as spillover stressors of living in neighborhoods with high rates of poverty, drug trafficking, and violence and having heightened risks of direct criminal justice system involvement. In the area of culture, 36% (45 of 124) specifically mentioned that clients’ and families’ alternative cultural explanatory frameworks or distrust of conventional mental health services or interventions were major barriers. In addition, many participants noted the adverse impact of fears related to deportation for those not yet permanently settled and lack of full access to either health care or social welfare benefits. Overall, 19% (24 of 124) specifically mentioned community cultural stigma (toward psychosis or mental health treatment participation), with some participants noting that some clients or families who were from very small cultural minority groups were so apprehensive about community attitudes that they were afraid even to use interpreters in psychiatric care, citing concerns about the rumors that would spread.

Emerging Strategies and Promising Practices

Across the board, virtually all participants who described concrete strategies or practices related to structural disadvantages mentioned standard case management practices—including assistance with welfare applications and linkage to subsidized housing and social welfare supports. At least 10 participants, however, explicitly mentioned that linkage to such programs was often inadequate to meet clients’ actual needs—for example, because of local housing shortages, lengthy waitlists, or high legal barriers.

At least some participants nevertheless described strategies and practice principles that appeared to go well beyond conventional individual case management or cultural competency trainings; a list of these strategies and textual examples are provided in Table 4. Strategies noted ranged from implementation of culturally adapted trauma interventions to intentional program placement and colocation and direct involvement with minority communities. Many respondents also emphasized the importance of culturally diverse teams and teams that include peer and family providers.

Perceived Challenges, Concerns, and Unmet Needs

Overall, participants called attention to a wide range of concerns related to social and structural disadvantages and cultural differences within their programs and the field more broadly. Responses ranged from brief acknowledgments of gaps in available interventions, trainings, and resources to detailed critiques. Thematic areas of concern or unmet need (beyond brief acknowledgment of a general lack of availability of resources or trainings) and textual examples are provided in Table 5.

Coding across open-ended questions indicated that 99 (60%) of the respondents identified at least one area of concern or unmet need related to addressing disadvantages and cultural differences and their intersections within early intervention services. Overall, many participants, including those working on programs with at least some form of structured culture training and policy, explicitly noted the challenges of actually enacting or operationalizing even those principles that are, in theory, widely accepted (such as the general goal of “cultural competency”). Such comments were especially common in discussions of model or team navigation of alternative explanatory frameworks or the personal and cultural meanings that might be ascribed to experiences of psychosis.

For example, one participant described a client whose belief in reincarnation was interpreted as a symptom of psychosis:

Discussion

In this article, we present what is, to the best of our knowledge, the only international study of program policies and practices, examining providers’ views regarding the impact of structural disadvantage and cultural difference in EIP services on program engagement and service-related outcomes and providers’ concerns about unmet needs. Quantitatively, we found that key program-level practices investigated in these domains, including assessment of childhood adversity and cultural formulation, were present in only a minority of programs. Most participants described substantive impacts of disadvantage and cultural difference on patients’ program engagement and ability to benefit from EIP services. Participants delineated both promising practices and a range of concerns regarding the underdevelopment of training, policy, and interventions related to these topics in EIP practice. On a hopeful note, a small subset of participants also described potentially powerful ways of engaging diverse communities and addressing structural disconnects.

As noted in the introduction, a substantial literature exists on the epidemiological role of disadvantage, migration, and culture (7–13). In comparison, far fewer studies are available regarding the development of practice components designed to address clinical and programmatic challenges related to these issues. Findings reported here indicate a need for greater attention to these topics, including training and intervention development, consultation with relevant community and service user stakeholders, greater diversity of EIP team members, and development of strategies to increase the engagement of members of marginalized cultural and linguistic minority groups. As suggested by participants’ comments regarding existing training models and manuals, in some cases a reevaluation of the extent to which these materials support deeper cultural and structural competencies (45, 46) seems in order. Ideally, all such efforts to reevaluate and, where necessary, develop new interventions or resources would be developed hand in hand with key community stakeholders, including service users and their family members. With respect to cultural difference, challenges tied to the navigation of alternative cultural frameworks suggest the potentially widespread value of additional development work in this area—work that, again, would strongly benefit from collaborative approaches or coproduction.

Most participants described disadvantages, cultural differences, and their intersections as major drivers of disengagement and disparities in young people’s ability to equally benefit from EIP services. Although some recent studies, as noted in the introduction, have identified these variables as key predictors of engagement and functional outcomes (24–27), other studies and reviews have not or have not included variables directly relevant to these topics in primary data collection (47–56). A 2012 systematic review of studies investigating predictors of relapse in first-episode psychosis, for example, identified only a small number of variables relevant to trauma, structural disadvantages, and cultural differences included in the extant research, and even these were present in only a few studies (57). A systematic review of service user priorities for measurement identified no such studies (58). We were likewise unable to identify any existing studies regarding the EIP-related measurement priorities of socioeconomically disadvantaged or racial-ethnic minority communities. These discrepancies between participants’ testaments to the influence of adversity and cultural difference—which were at times emphatic—and the constructs tapped in standard measurement batteries suggest a potential need to reevaluate core measurements. In addition, more extensive and diversified qualitative work (in research contexts) and consultation (in quality improvement efforts) aimed at achieving a deeper understanding of why certain groups of service users and families opt to disengage from EIP services seems warranted.

Finally, participants’ emphasis on the nuanced challenges of “actualization” or implementation underscores the need for thoughtful strategies that go well beyond “one touch” training or technical assistance. Here, the innovative and emerging practices described by a select subset of participants help illuminate more substantive ways forward, including structural solutions, such as physically locating programs in neighborhoods with the highest need, high rates of poverty, or the greatest racial-ethnic diversity; developing or integrating meaningful culturally adapted or culturally targeted interventions or practices; and deeply engaging with diverse communities and community stakeholders, including both consultation and team member involvement in relevant local communities.

Although the term “structural competency” appeared only once in participant responses, the many comments regarding intersections of race-ethnicity, class, and historical exclusion and the ways in which these intersections shape both trajectories of individual service users and service organization also point to the potential value of integrating pedagogical and intervention strategies developed within the structural competency movement (59). Like the promising practices identified by our participants, many structural competency implementations have focused on getting providers out into affected communities and directly engaged with key communities (60) and in other cases have adopted a version of the “flipped classroom” that places community members and diverse service users in a primary educator role (61).

This study had some limitations. A primary limitation was reliance on a convenience sample of EIP programs and providers. Response rates relative to estimated program numbers ranged from 12.5% to 100% across various countries, with 30% of U.S. sites (as of 2018) participating. Within the sample, representation was also uneven across demographic groups—for example, three-quarters of participants were White, and 81% had a master’s degree or higher. These potential threats to external validity must nevertheless be counterbalanced by the absence of any other extant data, including a similarly large international sample, and by the insights into perspective afforded by open-ended responses, the purpose of which is not generalizability but rather a deeper understanding of social and, in this case, clinical and organizational phenomena.

Conclusions

Findings suggest significant gaps and challenges related to equitably engaging and meeting the needs of clients and families from racial-ethnic and cultural minority groups and those experiencing poverty or other structural disadvantages. Research on the client and family experience of EIP services, how such programs intersect with these topics, how they affect engagement, and potential strategies and innovative practices should be prioritized, along with more widespread assessments of acculturation, previous adversity, and socioeconomic and structural disadvantages.