Falling Through the Cracks: Perspectives From Local Leaders on Substance Use and Psychosis Treatment for Youth

Abstract

Objective:

Explore local leaders’ perceptions of substance use and psychosis treatment to inform the implementation of an assertive community treatment model for historically marginalized youth.

Methods:

Interviews were conducted with local leaders in a Northeast city with relevant expertise. Interviews were recorded, transcribed, and analyzed using the Consolidated Framework of Implementation Research domains.

Results:

Fifteen leaders completed interviews and four key themes emerged: 1) A patchwork of systems attempts to catch youth early on, but often fails; 2) The inability to simultaneously address mental health and substance use concerns complicates care; 3) An ideal program would be flexible in the ways the current system is inflexible; 4) Factors important in tailoring a program to serve historically marginalized youth.

Conclusion:

When designing a program to support the engagement of youth with symptoms of psychosis and SUD, it is important to take a patient-centered and flexible approach that accounts for the community-based setting.

Rates of mental illness in youth are rising, and nearly half of all adolescents have had a diagnosed mental health condition at some point in their lifetime (National Institute of Mental Health (NIMH), 2023). Approximately half of all mental health conditions begin by age 14, while 75% present by age 24 (Active Minds, 2023). Psychotic disorders typically emerge in adolescence and young adulthood, and delays in treatment for can have lifelong ramifications for the physical and mental health of adolescents and young adults (“youth”) (Catalan et al., 2021). Current best practices in psychiatry clinics and emergency departments include early intervention and engaging in treatment to minimize the duration of untreated psychosis to improve the course of the disorder in the short- and long-term. (Catalan et al., 2021; Millan et al., 2016).

More than half of those individuals who experience a first episode of psychosis have subsequent relapses in the next three years (Brown et al., 2020). Early intervention for psychosis services seek to reduce delays in receiving specialized services and treatments (NIMH, 2022). However, healthcare access and current treatment pathways often impede the efficacy of these interventions and fail to catch youth in these early stages (Srihari et al., 2022). Further, approximately one half of those individuals who experience first episode psychosis also have a substance use disorder (SUD), most commonly cannabis use disorder (Wisdom et al., 2011). First episode psychosis with co-occurring SUD is associated with increased risk of prolonged psychosis, psychotic relapse, and treatment nonadherence (Wisdom et al., 2011). In part due to widespread legalization, increases in THC concentration of cannabis products and high rates of use among youth has led to concomitant increases in substance induced psychosis and first episode psychosis with co-occurring SUDs (Di Forti et al., 2019; Marconi et al., 2016; Wang et al., 2022).

Youth with first episode psychosis with co-occurring SUDs and substance induced psychosis present unique treatment challenges, as these diagnoses necessitate engagement with both mental health and substance use treatment pathways. A recent randomized controlled trial assessing usual care versus coordinated specialty care with substance use content for youth with first episode psychosis patients and SUD found that these youth did not benefit from the enhanced treatment arm, suggesting the need for more effective strategies within this subpopulation (Alcover et al., 2019; Cather et al., 2018). Further, youth often experience long wait times when accessing behavioral health assessment and treatment, and once receiving treatment, have high rates of disengagement with care (Colizzi et al., 2020; D. J. Kim et al., 2019). Racial and ethnic minorities in particular experience delays in behavioral health assessment and diagnosis, with a recent study finding that Black and Hispanic patients were less likely than White patients to receive a behavioral health diagnosis prior to the diagnosis of first episode psychosis, despite controlling for socioeconomic variables (Heun-Johnson et al., 2021). These delays in diagnosis indicate disparities in accessing preventive behavioral health care, which allows for identification and early intervention when youth have symptoms of psychosis and/or a substance use disorder, and can improve outcomes after first episode psychosis and substance induced psychosis.

One approach to addressing disparities in care for first episode psychosis and substance induced psychosis is assertive community treatment, which adopts a multidisciplinary team approach to meet the patient within their community and provide individualized care (Bond et al., 2001; Bond & Drake, 2015). Assertive community treatment is an evidence-based approach typically offered to adults with a severe mental disorder(Vanderlip et al., 2017). While availability of assertive community treatment varies between state and community contexts, a recent study reported that proportion of facilities offering ACT in the United States decreased significantly between 2010 and 2016 (Spivak et al., 2019). This is concerning, as assertive community treatment is linked to positive outcomes such as shorter hospital stays, improved quality of life, medication adherence, treatment retention, and patient satisfaction (Dixon, 2000; Rosen et al., 2007; Spivak et al., 2019). One study found that including intensive case management within a first episode psychosis program for youth in Australia with a psychotic disorder and frequent substance use had significant advantages in improving engagement for participating youth (Brewer et al., 2015). Another study of a program that used principles of assertive community treatment to reach homeless youth experiencing first episode psychosis and SUDs in Canada found that general functioning and mental illness severity improved with engagement in the program, and the majority reached housing stability after 6 months (Doré-Gauthier et al., 2019).

However, the implementation of assertive community treatment programs for youth with first episode psychosis with co-occurring SUD or substance induced psychosis has not been widely studied, particularly in the United States. Further, the assertive community treatment model has not been adapted to treat historically marginalized youth in urban settings who struggle to engage in typical office-based treatment (D. J. Kim et al., 2019). The objective of this study was to explore local leaders’ experiences and perspectives with substance use and psychosis treatment to inform the adaptation and implementation of an assertive community treatment model that cares for historically marginalized urban youth with first episode psychosis with co-occurring SUD or substance induced psychosis.

Methods

Recruitment and Interviews

Between March and September 2022, purposeful sampling of local leaders in Boston, Massachusetts, with expertise in the treatment of youth with psychotic disorders and/or SUDs (e.g., mental health advocates, providers, state agency representatives, school-based representatives, researchers) was conducted. Those who did not meet these criteria, or who were <18 years of age, were excluded from the study. Leaders were invited via email to participate in the interview. Additional leaders were also contacted via snowball sampling of invited leaders. A semi-structured interview guide was drafted by the principal investigator (AY) and reviewed with the program’s co-directors (HB, EK) based on the Consolidated Framework for Implementation Research (CFIR) domains to explore perspectives and recommendations in adapting and implementing the assertive community treatment model for our intended audience. CFIR is a widely used implementation framework which consolidates concepts from a wide array of implementation theories to understand what program works best in which setting and why (Damschroder et al., 2009). CFIR consists of five major domains (intervention characteristics, outer setting, inner setting, characteristics of the individuals involved, and the process of implementation), and each domain consists of several constructs (Damschroder et al., 2009).

At the beginning of the interview all participants received an Institutional Review Board (IRB)-approved information sheet, gave verbal consent to participate, and completed a brief form that assessed participant demographics (age, race, ethnicity), their work environment (e.g. healthcare, state agency, education), and the population that is the focus of their current job (substance, mental health). The interviews were led by an investigator with experience conducting qualitative research (AY) and took place over Zoom. A second investigator (ER) was present during interviews for additional observation and notetaking. The interviews lasted 30 to 60 minutes and participants were not remunerated for their participation. This study was deemed exempt from full board review by the Boston University IRB (H-42531).

Data Management and Analyses

The interviews were audio recorded and a paid service transcribed the recordings verbatim (Datagain Services, 2022). The transcriptions were reviewed for accuracy and de-identified by a research team member (TJ) and the software NVivo was used for data management (QSR International Pty Ltd, 2023). Coding was conducted between August 2022 and April 2023. Two members of the research team (ER, TJ), who were trained in qualitative analysis by an experienced qualitative researcher (DP), double coded the first two interviews. The remaining interviews were coded independently with a deductive approach using constructs and domains from CFIR as deductive codes. Thematic data analysis was performed and was guided by the CFIR model, where deductive codes were iteratively compared to identify patterns across the data from which we derived themes (Braun & Clarke, 2006). The research team met weekly to review coding discrepancies and reach consensus. A third member of the research team, who is an experienced qualitative researcher, served as an auditor for the coding process (CF). Coding continued for all interviews until the research team agreed that saturation had been reached. Exemplar quotes for each theme were selected through research team consensus.

Results

Of the 15 interview invitations sent via email, 12 organizations agreed to participate (Table 1). Of the 12 completed interviews, nine were conducted with only one leader from each organization, while 3 interviews were conducted with two leaders who worked at the same organization. Leaders worked in healthcare (e.g., psychiatrist, therapist, pediatrician), government agencies (e.g., social services, juvenile justice, department of public health), education (e.g., secondary school), or other organizations (e.g., health administration, substance use research). A three-person team (ER, TJ, CEF) deductively coded the interviews using all CFIR domains, and after iterative comparison, four key themes emerged (Table 2).

Table 1:

Demographic characteristics of local leaders

Sex	(n, %)
Female	12, 80%
Race
White	12, 80%
Black	2, 13.3%
Other	1, 6.7%
Ethnicity
Non-Hispanic	15, 100%
Work Environment
Healthcare	8, 53.3%
Government Agency	4, 26.7%
Education	2, 13.3%
Other	3, 20.0%

Table 2:

CFIR Domains and Constructs Used During Deductive Coding and Resultant Themes

CFIR Domains	CFIR Constructs	Resultant Themes
Outer Setting	Patient Preferences, Needs and Resources	Theme 1: A patchwork of systems attempts to catch youth early on, but often does not.
	Cosmopolitanism
	External Policies and Incentives
Characteristics of Individuals	Knowledge and Beliefs about the Intervention	Theme 2: The inability to simultaneously address mental health and substance use concerns complicates how youth and their families engage in care.
	Other Personal Attributes
Process	Planning
	Engaging	Theme 3: An ideal program would be flexible in all the ways the current system is inflexible, centering treatment around youth and families.
	Champions
	Reflecting and Evaluating
Intervention Characteristics	Relative Advantage	Theme 4: Tailoring a community-based program to serve under-resourced and historically marginalized urban youth
	Adaptability
	Complexity
	Design Quality and Packaging
	Cost
Inner Setting	Structural Characteristics
	Networks and Communications
	Tension for Change
	Compatibility

^*Local leaders did not provide any responses coded as the following CFIR constructs: intervention source, evidence strength and quality, trialability, peer pressure, culture, implementation climate, relative priority, organizational incentives and rewards, goals and feedback, learning climate, readiness for implementation, leadership engagement, available resources, access to knowledge and information, self-efficacy, individual stage of change, individual identification with organization, opinion leaders, formally appointed internal implementation leaders, external change agents, and executing.

Theme 1. A patchwork of systems attempts to catch youth early on, but often does not.

The current treatment pathway relies on youth with emerging substance use disorders and/or mental health issues to seek treatment in a hospital or outpatient setting. However, due to a variety of factors, the youth who need the most help are often the last to be seen in the traditional care setting.

“I think it’s not an uncommon scenario to have transitional age youth, young adults, older adolescents, who are in a place where you really, the writing is on the wall, I mean, you are seeing symptoms that are consistent with psychosis…and they are the absolute last individuals who we can get to come into a clinic setting for treatment.” [Healthcare]

“So, I mean, understanding that… these are the highest risk [youth and] families. These are [youth and] families that have struggled and also often have other known indicators like poverty, or being people of color, and they have also faced the trauma of racism over time.” [Healthcare]

When youth with mental health and substance use disorders are able to be seen (often admitted to inpatient units through the emergency department), the current system siloes mental health and substance use treatment in a way that it is difficult to receive both.

“It’s the old age-old dilemma and I’ve been in the field for 10 years, is it substance use or is it mental health … and when the two blend, people don’t know [what to do]…I’ve seen time and time again, folks that have just continuously fall through the cracks.” [Government agency]

“Stories that we hear tend to be… about the experience seeking treatment for a substance use disorder in their loved one, as a really challenging experience, one that was often met with involuntary treatment and then, the patient relapsing those ongoing struggles and then, it’s finally, when we focus on the anxiety, everything was better and so, there’s this beautiful light that’s being shone on the mental health as well, on the anxiety, the mood disorder and the treatment with regards to that and often this negative light that shine on like the process, navigating the system….These settings that are cold and harsh and so, they speak about it in a very negative way.” [Healthcare]

After initial treatment is complete and referrals are made for additional resources, there is no good way to track youth to see if they are accessing these resources and their symptoms are improving. Oftentimes, the cycle repeats itself, and the youth again present to the emergency department in crisis and are admitted to an inpatient unit.

“I think the people that we do see, it’s literally just like watching a train go down the tracks, because there’s so little opportunity to really intervene again, especially with specialty care.” [Healthcare]

“…if the kid doesn’t connect [to the resource] then they fall off the radar screen. And then it’s like, then the kid pings back to me a year later. And I’m like, what happened, you know, we referred you to whatever program and they didn’t go, they didn’t walk in, they didn’t show up for their visit. And like that team has no ownership of the patient, because the patient just never made it there.” [Healthcare]

Theme 2. The inability to simultaneously address mental health and substance use concerns complicates how youth and their families engage in care.

When youth and families try to engage with SUD or mental health treatment, oftentimes a complex combination of options are presented. These options can be overwhelming to navigate and prioritize for families that are juggling responsibilities.

“We view ourselves as… these… multidisciplinary teams that this is going to be …supportive, but I wonder what you hear from parents… if that would seem overwhelming, or…the best way to introduce our services. …I think [program] generally has been introducing it as a menu of options… for the first coordinated specialty care within [hospital]. Like, here’s our menu of options, you don’t have to …use all of them. And so you can see us presenting it in that way, too… because it’s healthcare, we’re like, ‘Oh, more is better’ but then, families they’re so overwhelmed.” [Other organization]

“Out of 10 referrals, we’ve only been successful engaging one of those young people. So, there’s a referral and they’ve got tons of services, Mostly [program name] services, like five additional service coordinators, clinician, worker, and it’s a lot. And I think because they [youth and/or families] are so inundated and overwhelmed…and they’re not interested. So, that’s a struggle. And we have talked to the director of that program and I have this dream, could you more individualize coming out of [program name] to say not every client needs all seven on your menu. They don’t need all seven. They just have a substance use disorder therapist or [substance use and psychosis treatment] person.” [Healthcare]

Due to the nature of substance use and mental health care treatment pathways, youth and families often receive treatment for one component and referrals to specialty care or outside programs for the other. However, this puts the onus on the patient to connect with yet another resource, delaying or preventing care from happening – which can have both short- and long-term health effects.

“…we continue to get stories from consumers that a youth went to the hospital with an overdose and they weren’t given a proper assessment, they might have been given mental health supports, but there was nothing that was available to them or made available to them for their substance use. So there’s still a lot of misinformation or non-information out there that’s just, it’s really, I just don’t understand why folks aren’t…doing a proper assessment - they’re assessing for mental health, but they’re not necessarily assessing for substance use and then, they’re not making appropriate referrals.” [Government agency]

“So just one person being the sole, they’ve been the main initial contact. And the flexible communication would be wonderful, because I think the one program that had really good success in reaching out to kids and kind of being the glue between the cracks… It was actually a nurse driven program, and the nurse would text and call and reach out without any appointment, without any initiative on the kid and families part, and they got all this info.” [Healthcare]

Understanding the context in which youth and their families (and/or support system) live is crucial to treatment success. There are often numerous barriers to engaging with care that are not solely dependent on youth, which make the current system inaccessible.

“When it’s the family that we’re also having trouble engaging with, it’s because they have other more immediate priorities, so I can’t take time off of work, I have four other kids at home, we already have a bunch of…other therapists that I’m supposed to be working with and so sometimes those are barriers.” [Healthcare]

“I think that sometimes families are under a lot of stress they have their guard up, perhaps there’s generational trauma, perhaps for whatever reason, there’s distrust of the system, the mental health system specifically, I think they feel, like providers have judged them in the past or perhaps judged other community members. So, I think the persistence is important to let them know you are cared about, your health comes first, we are concerned.” [Government agency]

Theme 3. An ideal program would be flexible in all the ways the current system is inflexible, centering treatment around youth and families.

Recognizing that the current system is inaccessible for those who need it the most, an ideal program would be community-based. This would eliminate a major hurdle for those that are not able to initiate contact using traditional treatment pathways.

“The most basic one is probably just that people who need to be served in the community don’t show up to care other places, so it’s hard for clinic based or hospital based providers to even really know what’s going on with them, or even really like make some of those connections, … if I’m at home, in my mother’s basement, smoking weed four times a day, because I’m impacted by psychosis, I’m not going to the primary care doctor, you know what I mean, I’m not returning calls to [program name], I’m not doing any of that stuff, right? So…you might get people to think about who are the patients who are not showing up to them, but that’s pretty hard to get providers to recognize who’s not causing me problems, because I’m not seeing them, if that makes sense. When someone’s showing up, and they’re in your office, and they’re floridly psychotic, you’re like, oh, ding, ding, ding, here we go, but people who are disengaged, and like that’s why we’re worried about them. How do you know who they are? How do you sort of capture them?” [Healthcare]

“… what I hear from a lot of families…is that they’re so desperate to get their loved ones help, but they just don’t know how to get them to the place in which, they can receive the help and so, I do think that [community-based treatment] would reduce a tremendous source of stress for a lot of families, knowing that once you enter in the home, that you guys would be able to provide guidance on how things should move forward and I think that is a critical part of the program and I know that’s something that’s going to provide a lot of relief.” [Healthcare]

The main focus (at first) should be relationship building to create trust between youth and clinicians. This would build a foundation before deciding upon an individualized treatment plan that works best for the circumstances of both youth and their family.

“…but I think the biggest thing is being able to go to them or meet in a place that is, at least in the beginning right, when you’re really focusing on that relationship building, when you’re focusing on trying to get that trust and that investment. So, it’s the nontraditional, flexible community-based model that I think is really the most important, when thinking about what has been successful in working with adolescents and young adults.” [Government agency]

“And I think that, again, it all goes back to flexibility, and really talking to the kid at the beginning, and trying to understand what the relationship is at home, that relationship is at school. And maybe not having a one size fits all approach….” [Other organization]

Theme 4. Tailoring a community-based program to serve under-resourced and historically marginalized urban youth

A clinical team with lived experience and racial/ethnic diversity is crucial in providing culturally sensitive care, which can help youth and families feel more comfortable when engaging in treatment. Youth of color are disproportionately afflicted by systemic barriers and challenges, such as jail/hospital diversion or fear of services from previous traumatic experiences, and clinical teams that reflect their identities may improve treatment success.

“...we think it’s important to have…somebody that is close in age and can relate to some of the experiences that they have on a more personal level. I think so too is the case with having somebody who speaks the same language that they do, who looks like they do, and don’t need to go through some of the mental gymnastics of trying to understand… allows for more culturally sensitive intervention. And I think it sends in a nonverbal way a message to the kids and their families that we appreciate the nuance that their cultural background brings to the table.” [Other organization]

A community-based program flips the traditional healthcare narrative, which puts the onus on patients to find and access appropriate care. In a community-based model, clinicians face the systemic barriers that patients are typically taxed with (i.e., transportation, parking, etc), but appropriate training and resources can alleviate this burden.

“Have those people [clinicians] done community-based work? If not, how do you prepare them to do community-based work? And it takes longer and you have to stay late all the time, and you can’t find parking, and there’s a snow emergency and so like just logistics…. Like you get a parking ticket, you’re in somewhere and you paid the meter, but then there was a crisis while you were there, and now you’re half an hour over, and now you’ve got a $45 ticket, who’s gonna pay that? So those kinds of things, I think, definitely come up a lot…So just like staff recruitment and preparing people for the realities of like, what is this going to look like, and how are we going to manage some of this?” [Healthcare]

As these patient-centered, community-based programs are newer in design, they can present unique difficulties, which require clinicians who are specifically trained for these circumstances. There are considerations with the home treatment aspect, such as providing culturally sensitive treatment, or treatment when family members or friends are around.

“What if you get to this person’s apartment building, and there’s a whole group of people sitting out on the steps, and you need to get by them, and what do you do, and do you feel comfortable? And how do you sort of manage that?” [Healthcare]

“…who may be of a different background and feeling concerned about being judged about how their home is set up or being judged about what it smells like, all these things that can make folks a little hesitant about welcoming people within their home. So, addressing some of the cultural barriers and issues, especially given that we know that this team won’t be able to be reflective of all the diversity that you will encounter with regards to your patient population, but perhaps if there’s a way to just acknowledge that, because then especially thinking about young people I’m thinking about like DCF [Department of Children and Families] right and if families have had previous experiences with DCF and just the way this home is set up just there’s a lot of worries and concerns that people may bring into the initial interaction with you all.” [Healthcare]

The community-based programs will be individualized, amplify the patient’s voice, and center around their preferences for treatment. This design will ultimately create trust between patient and clinician and can foster treatment success.

“I do sometimes think that there are people who are so, who want separation from systems, especially systems that they have been involved for a while and that they just either don’t trust or just want to be done with. So, I think for them, maybe the introduction might be hi, I’m [clinician], this is my role. This is what I’m going to do. Let’s meet maybe when you [are ready to] get out more. But there’s an introduction that’s less of a clinical intake…. I think if at all possible, [it’s best] to give the choice to the client. I think that’s when we’ve seen the most engagement… That could be yeah; this is great and then, not show up, right. So, there are those risks that you take within the community, but I think it’s very it’s very individualized between what the youth needs and what is going to keep them safest.” [Government agency]

“I think it’s so important to highlight how invested you are in them being at home and being in the community and being able to lead their lives and to have relationships with friends and family and work and just be themselves... I think often times like people think us as psychiatrists we’re like part of the system in which, we want people to be in the hospital or part of the system in which, we somehow benefit from people being on medications. When really, I try really hard to convince people or actually to demonstrate to people that is anything but the truth – it’s the complete opposite. That the reason why I’m so heavily invested is, because I WANT them to be home, I don’t want them to see me … So, I try to focus on that and talk about how this program is really focused on making that the case for that individual and so, I don’t want you back in the emergency room. I want you to be at home. I want you to be in bed playing video games and be happy about that. So, how can we get you there and this is a program that can do that for you, yeah.” [Healthcare]

Discussion

This project is, to our knowledge, the first to explore community leader experiences and perspectives regarding the adaptation and implementation of a novel assertive community treatment model for youth with first episode psychosis and co-occurring SUD or substance induced psychosis. Our findings suggest that current treatment mechanisms for youth with both substance use, and psychosis are insufficient, and that a flexible, community-based treatment approach could fill the urgently needed treatment gap for under-resourced and historically marginalized youth and their families.

When discussing how to best provide care for youth with first episode psychosis and co-occurring SUD and/or substance induced psychosis, local leaders often cited barriers to care in traditional healthcare settings, particularly for under-resourced and historically marginalized youth. A vast literature documents that vulnerable populations, such as low income families or those with severe mental illness, face multiple barriers when accessing healthcare services (Lazar & Davenport, 2018). These may include complications with health insurance, personal distrust of health providers, and difficulty navigating a fragmented healthcare system (Lazar & Davenport, 2018). The fragmentation between the mental health and substance use treatment systems was highlighted by local leaders throughout the interviews, noting that it is typical for youth to receive treatment for one or the other illness, but rarely both. For example, in 2022, only 14.6% of young adults with a serious mental illness and a SUD received treatment for both disorders, and 33% received neither type of treatment (National Survey on Drug Use and Health, 2023). This gap in care is problematic, as individuals with SUDs and other psychiatric comorbidities typically present with more severe clinical symptoms, have higher rates of emergency department utilization, and higher prevalence of suicide and self-harm behaviors (Donald et al., 2005; Torrens et al., 2012). While emerging evidence suggests that integrated treatment approaches addressing both mental health disorders and SUDs may be more successful than segmented or sequential approaches, these integrated treatment mechanisms are not currently the standard of care in the community (Henderson et al., 2019).

In addition to difficulties accessing integrated treatment, local leaders felt the siloed nature of mental health and substance use treatment pathways complicated how youth and their families continued to engage with care. As the mental health and substance use treatment systems rarely work in a concurrent fashion, providers often try to facilitate parallel treatment of both disorders by referring youth and their families to different resources for their mental health or substance use concerns. While screening interventions to identify SUDs in mental health treatment settings can be successful, patients frequently do not access the resources to which they are referred (Glass et al., 2015; Karno et al., 2021; T. W. Kim et al., 2017). These concerns around lack of engagement with referred resources are magnified for under-resourced and historically marginalized youth and their families, who are typically juggling competing priorities (work schedules, childcare, etc) and may have difficulties sifting through treatment options, referrals, and finding time to access additional resources. A recent screening intervention implemented at a statewide hospital association found that the lack of a standardized referral process when identifying social determinants of health-related needs made patient screening for social determinants difficult to sustain or justify (Freibott et al., 2021). Consequently, the hospital association implemented a technology platform to facilitate a closed-loop referral process, which enabled providers to track receipt of additional services by patients who may need them. Technologic interventions that decrease the referral gap may be options for hospital or clinic settings, in particular for patients with mental health and SUDs concerns, but would depend on financial support and organizational buy-in.

Another alternative to address the treatment gap for this hard to reach and complex patient population are community-based programs such as the effective programs developed in Canada and Australia (Dore Gauthier, Brewer). Our findings suggest that local leaders in the United States also support assertive community treatment for youth with first episode psychosis and co-occurring SUD or substance induced psychosis in the United States to improve access and engagement in care. Doré-Gauthier et al (2019) describe the creation of an assertive community treatment program providing intensive outreach services including addiction treatment, psychosis treatment, housing support, and case management services to access additional social services for youth experiencing homelessness in Canada (Doré-Gauthier et al., 2019). In their two-year follow-up study, the authors find that youth receiving the assertive community treatment intervention (including both SUD and psychosis treatment) achieved housing stability more quickly and spent less time hospitalized than youth receiving early intervention for psychosis services alone (Doré-Gauthier et al., 2020). An intensive case management model built into an established first episode psychosis service in Australia showed significant improvement in key service outcomes such as hospitalizations, crisis contacts, and overall symptoms of global functioning (Brewer et al., 2015). Our study also identified some strategies to support successful program implementation such as emphasizing relationship building with youth and their families before determining a treatment plan and having clinicians with lived experience to deliver culturally sensitive care. Since these programs are not widespread, future implementation research is needed to assess reach, effectiveness, and maintenance in diverse settings and populations to further reinforce their utility.

The results of our study need to be considered in light of methodological limitations. As we were focused on the implementation of a program for historically marginalized urban youth, generalizability of our findings may be limited to similar settings and population. Second, our purposeful and snowball sampling approach identified leaders with expertise relevant to our local context, utilizing a small and heterogenous sample which may be less relevant in other settings. Although the leaders we spoke with worked in different settings they were predominantly white and Non-Hispanic. There may be other cultural or structural barriers to treatment for historically marginalized youth that need to be considered in program development that were not identified by a racially and ethnically homogenous sample. Further, as we interviewed those in leadership positions, their perspectives may not reflect those who are in other, non-leadership positions. Lastly, this study did not include youth or caregiver perspectives which are important to consider when developing and adapting treatment interventions for youth.

Conclusions

When designing our novel, community-based program to support the engagement of historically marginalized urban youth with symptoms of psychosis and SUD, and their caregivers, it is important to take a patient centered and flexible approach that accounts for both mental health and substance use symptoms and the community-based setting. Future qualitative studies should explore youth, patient, and caregiver perspectives on assertive community treatment, as well as patient-caregiver barriers and facilitators to engaging in this model of care.