Structural Disadvantage and Culture, Race, and Ethnicity in Early Psychosis Services: International Provider Survey
Abstract
Objective:
Little is known about provider perspectives on programmatic responses to structural disadvantage and cultural differences within early intervention in psychosis (EIP) services, programs, and models. The primary objective of this study was to investigate providers’ perspectives on the impacts of disadvantage and minority race, ethnicity, and culture and to describe current practices and perceived gaps and concerns.
Methods:
An online survey of specialized EIP providers was disseminated in the United Kingdom, United States, Canada, Australia, and Chile. A total of 164 providers, representing 110 unique sites, completed the survey. Closed-ended questions gathered demographic and program data, including information on formal assessment of trauma or adversity, integration of trauma-informed care, integration of formal cultural assessment tools, training focused on culture, programmatic changes to address culture-related issues, and consultation with cultural insiders. Open-ended questions addressed the demographic mix of the program’s client population; the perceived role and influence of trauma, structural disadvantage, and cultural differences; and concerns and needs related to these topics. Frequencies were examined for closed-ended items; open-ended responses were systematically coded.
Results:
Overall, survey findings suggested low levels of implementation of a variety of assessment and support practices related to cultural diversity in EIP programs. Coding of open-ended responses revealed numerous concerns regarding the impacts of disadvantage and cultural difference on clients and perceived gaps in policy and implementation.
Conclusions:
An expansion of research and service development aimed at better meeting the disadvantage- and culture-related needs of young people with early psychosis and their families should be a priority for the field.
HIGHLIGHTS
•
Intervention components targeting disadvantage along with cultural and racial-ethnic differences remain underdeveloped within specialized early psychosis services.
•
Providers described numerous ways in which trauma, disadvantage, and culture affect client and family engagement and outcomes.
•
Survey responses highlight deeper challenges and complexities associated with providing patient- and family-centered care, particularly among groups with non-Western explanatory frameworks.
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.
| Variable | N | % |
|---|---|---|
| Service model | ||
| OnTrackNY/USA | 44 | 27 |
| NAVIGATE | 18 | 11 |
| EPPIC (Early Psychosis Prevention and Intervention Centre) | 21 | 13 |
| EASA (Early Assessment and Support Alliance) | 8 | 5 |
| Ohio BeST (Best Practices in Schizophrenia Treatment) model | 8 | 5 |
| Open Dialogue | 4 | 2 |
| U.K. National Health Service model | 31 | 19 |
| Montreal EPI (Early Psychosis Intervention) | 3 | 2 |
| Ontario EPI | 8 | 5 |
| Yale STEP (Specialized Treatment in Early Psychosis) | 2 | 1 |
| Mass PREP (Prevention and Recovery in Early Psychosis) | 3 | 2 |
| California Felton | 3 | 2 |
| Blended/hybrid model | 11 | 7 |
| Role | ||
| Therapist, psychologist | 43 | 26 |
| Psychiatrist or nurse practitioner (prescriber) | 24 | 25 |
| Case manager (including nurse case manager and vocational support staff) | 29 | 18 |
| Director and team supervisor | 54 | 33 |
| Peer worker | 8 | 5 |
| Research or evaluation staff | 7 | 4 |
| Race-ethnicity | ||
| Hispanic or Latinx | 20 | 12 |
| East Asian origin | 3 | 2 |
| South Asian origin | 3 | 2 |
| Southeast Asian origin | 2 | 1 |
| African or Black | 7 | 4 |
| Caucasian or White | 122 | 74 |
| Middle East origin | 1 | 1 |
| Multiracial | 6 | 4 |
| Female | 107 | 66 |
| Highest level of education | ||
| Secondary school | 1 | 1 |
| Some college | 3 | 2 |
| Bachelor’s degree | 27 | 17 |
| Master’s degree | 85 | 52 |
| Doctorate (Ph.D., M.D., Psy.D.) | 48 | 29 |
| Age (M±SD) | 41.7±10.2 |
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.
| United States (N=77) | United Kingdom (N=18) | Australia (N=4) | Chile (N=1) | Canada (N=10) | Total (N=110) | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Variable | N | % | N | % | N | % | N | % | N | % | N | % | pa |
| Role | |||||||||||||
| Peer specialist | 36 | 47 | 7 | 39 | 4 | 100 | 1 | 100 | 5 | 50 | 53 | 48 | .005 |
| Vocational specialist | 72 | 94 | 13 | 72 | 4 | 100 | 1 | 100 | 7 | 70 | 78 | 71 | .001 |
| Family peer or family partner | 22 | 29 | 3 | 17 | 3 | 75 | 0 | — | 3 | 30 | 31 | 28 | .007 |
| Policies and practices | |||||||||||||
| Formal trauma and adversity assessment | 31 | 40 | 10 | 56 | 2 | 50 | 0 | — | 1 | 10 | 44 | 40 | .126 |
| Trauma-informed care policies in place | 32 | 42 | 9 | 50 | 3 | 75 | 0 | — | 3 | 30 | 46 | 42 | .034 |
| Formal cultural assessment | 16 | 21 | 1 | 6 | 3 | 75 | 0 | — | 1 | 10 | 21 | 19 | .006 |
| Targeted training on psychosis and culture | 25 | 33 | 6 | 33 | 2 | 50 | 1 | 100 | 0 | — | 34 | 31 | .016 |
| Formal cultural competency policy | 24 | 31 | 6 | 33 | 3 | 75 | 0 | — | 0 | — | 33 | 30 | <.001 |
| Changes made to culture-related policy in response to emergent challenges | 19 | 25 | 5 | 28 | 3 | 75 | 0 | — | 3 | 30 | 30 | 27 | .183 |
| Consultation with cultural insiders with respect to individual clients or cases | 39 | 51 | 12 | 67 | 4 | 100 | 1 | 100 | 7 | 70 | 63 | 57 | .110 |
| Consultation with cultural insiders with respect to policy and practice more broadly | 24 | 31 | 10 | 56 | 3 | 75 | 0 | — | 3 | 30 | 40 | 36 | .003 |
a
Fisher’s exact test.
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.
| Category | Quotation |
|---|---|
| Impact of structural and socioeconomic disadvantage | Example 1: “[Poverty] impacts clients and families dramatically. The clients who do not have to worry about anything related to finances at all solely have the ability to focus on their recovery without having to make decisions about prioritizing time to do one thing over another.” Example 2: “Socioeconomic disadvantage impacts the people in our programs as it creates a constant state of instability. . . . When one’s focus is on securing the basic things they need to live, they are not able to focus on other things that are important along the recovery journey. It also refocuses the goals that arise during meetings with professionals from counseling to process or work through their experience, to more case management to address tangible or pressing matters.” |
| Impact of cultural, racial, and ethnic differences | Example 1: “Some individuals of various religious beliefs do not align with the medical model of treatment and are at times resistant to interventions.” Example 2: “I have witnessed that my clients of Asian descent do not generally have families that agree with their taking medication for psychosis or accept the diagnosis of schizophrenia spectrum disorders, nor do they tend to participate in the clients' treatment.” |
| Influence of structural and socioeconomic disadvantages on disengagement | Example 1: “It seemed to me that the people who were most likely to disengage from the program were those facing serious, immediate risk related to socioeconomic factors (i.e., housing, poverty). I believe this was related to the fact that they saw the program as more focused on wanting them to ‘engage in treatment’ as defined by the program rather than meeting practical needs related to housing and money.” Example 2: “From my experience . . . there is no question that the degree of socioeconomic disadvantage experienced by clients has a strong impact on the likelihood that they will maintain a relationship with the program.” |
| Influence of race, ethnicity, and culture on disengagement | Example 1: “I think that [disengagement is higher for] African American clients and families, for so many reasons. Historical oppression at the hands of government and ‘treatment’ centers, lack of providers that are from the community, lack of treatment modalities that are tooled specifically for communities of color . . . almost too many reasons to list.” Example 2: “The main migrant populations . . . are Micronesian and Filipino. The Micronesian migrants suffer particularly from marginalization. . . . It's my impression that we don't even see many of these people because there are many barriers to engaging with treatment (lack of knowledge of health systems, lack of resources, differing cultural conceptualizations of psychosis).” |
| Intersectional impact of disadvantage and minority racial and cultural backgrounds | Example 1: “With migrants . . . we do not have a good enough understanding of their cultures, preferences, way of life, values . . . and they feel the disconnection because they are a visible minority [group]. They have this added stress. For our indigenous peoples that have left the reserves, they have often left situations of poverty, abuse, substance abuse and are trying to build a happy life, but they also feel that disconnection, not always having the possibility to live ‘their culture and traditions.’” Example 2: “Race and minority status are discussed in many stories in the news, and [clients] are talking about the discrimination they have faced. Similar to these civil rights issues are the civil rights issues related to mental health, and many of our clients are treated as second-class citizens. Having more than one minority status or something that can marginalize someone is a huge stressor and likely affects how much individuals engage in services/connect to others/feel understood.” Example 3: “SES [socioeconomic status] has a huge impact on our clients . . . and intersects with cultural factors, such as distrust of White, mainland interventions and institutions, which is rationally based on a long history of being mistreated by these institutions.” |
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.
| Category | Quotation |
|---|---|
| Specialized services to address the trauma-related needs of ethnic minority and refugee groups | “The levels of trauma [among ethnic minority clients] also affect severity of symptoms, and we are addressing the need to improve our brain regulation skills (EMDR [eye movement desensitization and reprocessing], neurofeedback, qEEG [quantitative electroencephalogram], trauma-sensitive yoga, Capoeira Angola), so that talking therapies are more effective and medication doses can be lower. We have consortium connections to specialist culturally based services and [a specialist service for survivors of torture].” |
| Physically locating programs in high-need, disadvantaged neighborhoods | “We intentionally established the program in a neighborhood that would be central to several communities with high levels of poverty, disproportionately large numbers of people of color, and generally high levels of socioeconomic disadvantage.” |
| Physically colocating with family health services | “We've also seen that family medical emergencies, possibly related to poorly controlled chronic health problems, can understandably take priority over mental health care. In order to address these possibilities, we intentionally colocated with a family services agency and a general medical practice that have served nearby communities for many years. We are therefore able to help clients meet many family needs in one trip.” |
| Consultation with cultural, racial, and ethnic leaders or insiders | “We have an advisory panel that includes an expert in recognizing and treating trauma in communities of color and the director of a local nonprofit designed to engage communities of color in mental health treatment. Both experts have consulted extensively with me and will be working with the entire staff in the future.” |
| Direct involvement with relevant cultural, ethnic, and racial minority communities | “Members of the clinical team frequently take part in nearby community events in order to increase our understanding of 'what matters' to the people we serve.” |
| Explicitly addressing inequality and power hierarchies through supervision | “The supervision I provide . . . covers issues of inequality and power, and I try to ensure (in my position as supervisor) that issues of power and inequality are adequately formulated and attended to.” |
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.
| Category | Quotation |
|---|---|
| EIP programs or models can be too one-size-fits-all | Example 1: “I have seen a lack of knowledge and a one-size-fits-all approach leading to the service not being suitable for some people and their families.” Example 2: “Seeing psychosis through a mainstream lens I believe leads to misdiagnosis—overdiagnosis in some cases, underdiagnosis in others. And to treatment discontinuation. Better, clearer guidelines and training are needed for a truly culturally responsive early psychosis program.” |
| Underlying ethnocentrism in EIP models and practice | “Most of the [privileged models] are individualized approaches that are permeated by White, Western (male) worldviews, such as CBT [cognitive-behavioral therapy] and the medical model. Moreover, as these assumptions are taken for granted, they are not adequately critiqued. It is therefore difficult to work from the perspective of the individual client/family and attend to their cultural perspectives and needs when the wider system is not supporting such practice.” |
| Socioeconomic needs are decentered | “The model of the program does not prioritize needs related to socioeconomic disadvantage, and this means that in practical ways these needs are not adequately addressed and also that in more abstract ways these needs and experiences are disconnected from how problems are conceptualized and approached by staff. The primary focus [on therapy] at times translates into needs related to socioeconomic disadvantage being decentered and not being seen as key foci of treatment or recovery.” |
| Providers can be ethnocentric | “We still have a long way to go before clinicians in early intervention services understand cultural humility and sensitivity. The common belief that psychosis arises from a universal illness process prevents providers from seeing culture as meaningful, and cultural beliefs and experiences are still often misrecognized as ‘symptoms.’ Providers are also often unaware of (or even judgmental of) indigenous explanatory models and healing practices.” |
| Biomedical clinical frameworks are overemphasized | “There is an overemphasis on biological explanations for symptoms to [the] exclusion of a [broader] range of explanations.” |
| Lack of and need for team diversity | Example 1: “Having staff and peer and caregiver support workers from a variety of cultural backgrounds would help.” Example 2: “I think the best way to address cultural differences is to engage staff and clients from diverse cultural backgrounds when designing or improving early psychosis services.” |
| Lack of and need for deeper engagement with clients’ values, experiences, and priorities | Example 1: “Lack of knowledge and understanding of different religions (specifically Islam and Sikh) have proven to be a challenge within our clinic. It has resulted in assumptions being made that were untrue or hindered the progress of therapy, as specific recommendations or exercises were in direct contrast with a client's religious values. I think the only way to best address cultural differences is to continue to steep ourselves in the experiences of others. Asking our clients questions about their experiences of their culture and religion is the only way to ensure we are understanding the ways in which these differences impact their lives. A continued open dialogue about remaining genuinely interested in understanding another person's experience may help to keep clinicians aware of their own biases and need for education.” Example 2: “[I]t does seem that the standardized treatment formats (such as early intervention manuals) could be expanded to better address trauma and cultural diversity. I think we need much more effort to hear from people who are in early psychosis treatment, who have been through it, and ESPECIALLY people who did not feel early psychosis was a good fit for them.” |
| Lack of and need for meaningful engagement with cultural minority communities | Example 1: “I would like to see much more link[age] with local communities to identify problems and barriers and build roles for people within those communities to better understand how to meet [service user] needs.” Example 2: “With respect to [collective] trauma—like that which is carried by entire communities—programs and clinicians need to seek out and value relationships with a range of experts from those communities, not just other clinicians. We need to look at the way in which the community expresses the effects of that trauma (artistically, religiously, medically, socially—as many ways as possible) in a serious way in order to begin to appreciate the impact of the trauma that a community might hold.” |
| Lack of and need for meaningful engagement with cultural healers and healing practices | “[There is a] lack of knowledge on how to work effectively with—and/or a poverty of power in working with—culture healing professionals (curandera/o, hands-on healers, naturopaths).” |
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:
Finally, it is worth noting that many participants felt that it was not just lack of engagement with specific cultural communities that was a problem but a broader lack of engagement with experientially grounded roles and perspectives. For example, many participants recommended more universal inclusion of peer and family-peer roles, as well as involvement of service users, families, and communities in service planning and design.A client of ours is of Pacific Island descent. The client believes in reincarnation. Her narrative involves a story of conflict with Japanese ancestors. The therapist insists on calling this the client's “delusion.” My concern is that this young woman's experience has been dismissed by the therapist. Were the therapist to [actually] approach this young woman's experience with cultural humility and openness, together they might create more respect and healing within the possible context of the client's belief system.
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.
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References
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Received: 2 April 2020
Revision received: 28 July 2020
Accepted: 30 July 2020
Published online: 12 January 2021
Published in print: March 01, 2021
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The authors report no financial relationships with commercial interests.
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