Good morning, everybody, or good afternoon. I want to welcome you to today's webinar on the experiences of racially diverse families navigating pathways to treatment for early psychosis by Dr. Oloduny Aloe. I am Judith Doberman, the program manager for PEPMED at Stanford University School of Medicine. And with us today is Dr. Stephen Edelsheim, who is a clinical professor at the Stanford Department of Psychiatry and Behavioral Sciences, the associate chair for community partnerships, and the director of the Stanford Center for Youth Mental Health and Well-Being. And joining us later today is also Dr. Kate Hardy, who is a clinical psychologist and a clinical associate professor in psychiatry and behavioral sciences at Stanford School of Medicine. And both Drs. Hardy and Edelsheim will be co-facilitating with our presenter today your questions. Let's see. Okay, let's advance the slides. Today's webinar is brought to you as a partnership between PEPMED and SMI Advisor, which is a SAMHSA-funded initiative implemented by the American Psychiatric Association. We will be offering CEUs for physicians and psychologists for the live presentation today, and we'll share the information with you on how to claim CEU credits at the end of the webinar. And a little bit of just logistics. If you would like to introduce yourselves through the chat, please open the chat window and you can see it through the flip bar. And if you were to select everyone down here, that would then allow you to introduce yourself to all of the attendees. Sometimes people send questions just to the panelists, which is also fine. But if you would like to send your questions, introduce yourself to everyone, please make sure that you select everyone in the dropdown. And now to introduce our speaker today, Dr. Aluloy is an assistant professor in the Elson S. Floyd College of Medicine at Washington State University and the co-director of Washington State Center for Excellence in Early Psychosis. She serves as one of the lead evaluators for New Journeys, which is a network compromised of 11 coordinated specialty care programs in Washington State. Overall, her research is focused on improving the pathways to care for the Black African American community and family engagement in coordinated specialty care, reducing racial and ethnic inequalities and mental health service utilization, and improving services for individuals with co-occurring substance use disorders and serious mental illness. And Dr. Aluloy has no financial relationships or commercial interests or conflicts of interest to report. All land in Washington was once native territory. The land that I occupy, that Dr. Aluloy occupies in Spokane, Washington, is the traditional home of Spokane tribal nation. It is our duty to recognize that many of the institutions or organizations where we work and conduct research are indeed on native lands. Thank you. I'm going to turn it over to our speaker. Thank you so much for that, Judith. I am excited to give this presentation and be here today to speak with all of you. We have a couple of learning objectives. The first is to describe the challenges seeking coordinated specialty care among racially and ethnically diverse families, to describe how prior experiences can impact engagement and decision making while receiving services in coordinated specialty care, and kind of talk through and have a discussion, and I hope it's a lively discussion, where we kind of identify ways to increase engagement and services among racially and ethnically diverse families. And I am a firm believer that pathways to care, whether those experiences are positive or negative, really impact engagement and treatment outcomes while individuals receive services from LCSC programs. Next slide, please. So, our outline for today's presentation is I'm going to define pathways to care, which is a little bit different from how we've traditionally seen pathways to care being defined. I'm going to describe the experiences and challenges prior to initiating outpatient services for early psychosis, and so I'm really going to bring in some of the findings that I have found from my K01 that has really looked at pathways to care for family members. And then I am going to kind of bring in and synthesize a lot of the literature, or the few, the limited literature that has been conducted here in the United States, so it's kind of applicable to the work it is that we're doing, and then discuss strategies looking at multiple levels of influence and really talking about social determinants of health. Steve kind of put in the chat that I will take questions throughout, and so I welcome questions throughout the presentation, and we'll try to answer them, and we can kind of have a discussion as we kind of matriculate through and move through the presentation. Next slide, please. So let's start with context. Next slide, please. So incidence rate. I think it's really important to focus on incidence rate, and there have been limited studies that have estimated the incidence rate of first episode or the diagnosis of first episode. So there's an article in 2017 by Gregory Simon that has really looked at the incidence for first episode psychosis, but that article actually didn't take a look at whether or not there are racial and ethnic differences in the incidence rate for FEP. And so arrow, click the arrow, Judah. With the exception for this, yep, it went, yep, with the exception for this study. So this study was conducted in 2019, and while the focus of this study was not to look at racial and ethnic differences, it really also presented some findings on whether or not there were differences in racial and ethnic differences in the incidence rate among racially and ethnically diverse groups. And so what the authors found, if you click the arrow again, Judah. So what they found was that among Medicaid-insured population in New York, non-white individuals, which includes non-Hispanic, Black, Hispanic, and other racial and ethnic diverse groups, they had the highest incidence rate compared relative to white individuals. And so this was only one study that focused, it was one study that has been conducted in the U.S. that really looked at those differences in incidence rate, but it also just focused on one particular state. And I think this highlights the need for additional research. So right out of the gate, we're kind of highlighting these gaps of additional work that we kind of need to do here in the U.S. to really get a better idea of what that incident rate looks like and whether or not there are differences among racially and ethnically diverse groups. Next slide, please. So something to think about based off that slide is we tend to think about, do the demographics of your coordinated specialty care program adequately represent the racial and ethnic composition of your state? And so in a lot of different research that I do, this is the first thing that comes up. This is the question that we ask, like, are we accurately capturing and do we accurately represent and do the demographics of outpatient population represent the people that are actually receiving services? And so what I propose is really thinking about the second question is, do your programs actually capture the potential higher incidence rate among racially and ethnically diverse communities? And so preliminarily in Washington State, we are working with our state partners at the Health Care Authority to really look at racial and ethnic differences in the incidence rate. And so based off our findings, which are unadjusted, we have found that racially and ethnically diverse groups, so Black, African-American, Hispanic, and American Indian, Alaska Native individuals have a higher incidence rate for FVP compared to white individuals. And so the question that I now ask of our programs is, do our programs adequately capture that particular demographic and other individuals that we're not able to get? And so that allows us to think about pathways to care and are we missing individuals in our early intervention programs? Next slide, please. So what is meant by pathways to care? So there is this statement that has been consistently used, and the citation is there at the bottom, that the pathways to care is a sequence of contacts with individuals and organizations prompted by the distressed person's efforts and those of his or her significant others in seeking help and their response to that. If you press the arrow, please, Judith. So in a lot of the literature, we tend to think about pathways to care, and it has focused a lot more on the duration of untreated psychosis. And so it really looks at the onset of psychosis to the initiation of treatment. And so what I like to think about pathways to care is that it encompasses a little bit more than that. And I think as, if you press the next arrow, please, Judith, that it also includes those experiences during the prodromal phase, where we're trying to capture people a little bit earlier. So we're trying to capture people at clinical high risk and during that time. And so now we're looking at the duration of untreated psychosis within the pathways to care, the prodromal period, if you press the next arrow, please, Judith. But I also think that there are these experiences that predate the prodromal phase that really have an impact on the prodromal period and the pathways to care, and even during that DUP phase as well. And all of these kind of encompass the pathways to care prior to the initiation of services. Next slide. Can I ask a question that's come up? In terms of the data around increasing incidence rates, this question's from Kristin Woodbury Do you trust the increasing incidence rates among the BIPOC population, given sort of the other data that really speaks to the potential overdiagnosis within that population of different mental health related kinds of issues? Could you speak to that issue? Yeah, I think that that is a really good question. I think we think a lot about first episode psychosis, but there's a lot of literature out there that has predated a lot of the work that is currently being done that's focused on the overdiagnosis of schizophrenia or schizophrenia spectrum disorders for African Americans and other racially and ethnically diverse groups. And I think that is definitely a part of it. And it's kind of a double edged sword in that this is the data that is available and it doesn't account for bias. It doesn't account for the overdiagnosis of the potential overdiagnosis of racially and ethnically diverse groups. And how I like to think about it is that we see a lot of adults who kind of show up later on after their first episode with schizophrenia and entering treatment at that time. And so it's kind of like, do I trust the data to a certain extent? And I think that that's why you need more than one study to kind of take a look at that. And I think that over the years, things have changed in terms of diagnoses. And so that's also something to kind of look at as well as looking at those trends over time. And so at this present point in time, it's the only data that we kind of have to kind of go by. But I think over the years, I think it's interesting to kind of take a look at looking at that first episode and then looking at the rates later on and people being diagnosed or trying to enter into treatment after they've moved past that FEP stage. Thank you. And as we move through your presentation, one of the issues that a number of us have become aware of related to this, and I know you mentioned the AI and in population and in terms of Washington State, we've come to realize that in terms of all the federal funding for early psychosis, that really none of it is really going to tribal communities or to tribal programs for the most part. And certainly there are cultural issues related to that and that question. But as we think about your presentation, as you go through, there are complex issues actually about even who's accessing the resources that become available for the services as well. Yeah, absolutely. I think that that is something that the Center of Excellence here has really been focused on and it's a priority for us in Washington State moving forward to really work with our tribal communities here to adapt a CSC model so that it's looking at the cultural adaptation of that, but also the implementation of those programs. And I think it's important to make sure that it is culturally appropriate and it aligns with individuals and communities culture, but it's also an adaptation needs to be made in terms of the implementation to kind of assume that a CSC program that works in an urban population in a community-based behavioral health agency will automatically translate into working in tribal communities. I think it's kind of naive to think about that. And I think a true CBPR partnership in that adaptation is absolutely needed before we kind of move into seeing whether or not that works. And I think that's part of the problem is finding tribal communities to partner and work with. And I think that if you have that established relationship, it makes it a little bit easier. But it also means that you may also have to open up that criteria for tribal communities, which is something that we're kind of moving forward into. And the same thing kind of applies to serving rural communities as well. Thanks. Thanks very much. Yeah. Next slide, please, June. So Pathways to Care, I think we sometimes think of it as this very linear pathway, like, oh, there's these experiences that we kind of know about during that predate the prodromal phase. And they're usually maybe some interpersonal experiences that happen there. And then there's experiences during the prodromal phase and then even after the onset and then lo and behold, everyone's going to get into early intervention programs and uncoordinated specialty care. And I think over the years, the main focus is really reducing that duration of untreated psychosis. So really focusing on that blue box to the yellow drop over there. And it's kind of expanded. And it's really nice to see the expansion to catching people earlier and improving those pathways to care. And so if you press the arrow, Judith, and you can press the arrow again. So we kind of see these the ways in which we really try to improve those pathways to care. So individuals are moving from the onset and catching people early and working within the community to get them into coordinated specialty care programs. And then even during the prodromal phase, really creating programs that are focused on clinical high risk. If you press the arrow again, Judith. And so but sometimes we don't necessarily capture that. And so sometimes individuals just move really through these different stages and these different stages, whether it's from the onset or whether it's from the prodromal phase or whether individuals are subsequently moving through each of those phases. People experience these positive and negative experiences where there's different events that occur, whether it's contact with police law enforcement, where it's contact with informal and formal sources, such as religious leaders, whether there's additional barriers. And so the more negative experiences that people have basically contribute to more treatment delays. If you press the arrow again, Judith, I think it goes to the next slide. One more time. So we can we can thank my three year olds for putting all of these squiggles on here. But I think that I think it demonstrates the fact that these pathways are not linear pathways and some individuals we are not capturing. And so all of these swirls that are kind of embedded within here are all of the barriers that people receive in that they bounce around and try informal and different sources. And it leads to treatment delays. And a lot of individuals we do not capture in our coordinated specialty care programs. And so it's thinking about how we can improve those pathways so that we are getting more individuals into our coordinated specialty care and capturing people a little bit earlier so they can receive services a little bit earlier. Next slide, please, Judith. So if anybody has any other questions, I can kind of we can kind of talk about them now. If not, I'm just going to keep moving forward. OK. So exploring pathways to care among racially and ethnically diverse groups is really the focus of this presentation, and so the next couple of slides, I'm really going to really synthesize the literature, the literature that has been conducted over the past decade. And a lot of it is for Black and African-Americans. A lot of those studies were conducted in the early 2000s. And so I really hope that I am able to kind of do it justice a little bit. Next slide, please, Judith. So one of the things that I want us to kind of take a look at is is the predictors for earlier onset of psychosis. And so there's been one or two studies that have really looked at what are the predictors for earlier onset. And so these two studies were really predominantly African-American populations, where the population or the sample for the studies were about 80 percent African-American that came out of Atlanta. And so I usually deem these as the studies by Compton and his crew. And so it really found that the family history of psychosis was associated with an earlier onset for the prodrome phase and the earlier onset of psychosis, where it was about 16 to 18 years compared to those who did not have a family history of psychosis. And so for those who didn't have a family history of psychosis, the prodrome phase started at 18 years compared to 22 years for the onset of psychosis. Another interesting study that was a little bit more recent really looked at residential instability, the number of moods from age 12 to 18, and that individuals that had residential instability and basically is the erosion of social integration within the local community decreased social functioning and led to the earlier onset of psychosis. And I think these two studies, one at the interpersonal level and one kind of at this community societal level, really shows the impact of not just individual level factors, and even factors that kind of predate individuals in the Padron phase. And so especially if you're thinking about people move in before the ages of 12 to 18 and how many times they're moving, and even just the family history of psychosis, really impacts the onset of psychosis and therefore kind of trickles over into treatment outcomes and symptom severity. Next slide please, Judith. So when we think about experiences, and I just want to reiterate, a lot of the studies that I'm synthesizing here are studies focused on racially and ethnically diverse groups, and so a large bulk of it is primarily just studies that are predominantly African-American. African-American studies with a sample was African-American. So I'm going to start here with substances. There was a study conducted by Mankul Compton that found that Black individuals with co-occurring cannabis use disorder were more likely to report childhood, if you press the next arrow for me, Judith. You can actually press all of the arrows, because I think it makes, press it again and again. Okay. Okay. So basically individuals with co-occurring cannabis use disorder were more likely to report childhood sexual and physical abuse compared to those who did not have a cannabis use disorder, which is why you see this trauma red box, which is experiences that predate the pedromal phase really taking an impact on substance use. And then we see here that substance use has been linked to symptomology and increased severity of symptoms, and also has been linked to age of onset. Then we have contact with law enforcement, where that individuals who have a substance use disorder have an increased risk of having interactions with law enforcement. But even those who have an interaction with law enforcement are also more likely to have a substance use disorder. And so both of those things, both substance use and contact with law enforcement have been linked to symptomology as well, the worsening of the severity of symptoms. And so we see that there's this one arrow that goes from contact to law enforcement to substance use, and then even contact from law enforcement to symptomology. But it's really both a two-way street where increased severity of symptoms increases the risk of individuals also engaging more with law enforcement. And so the same thing with trauma, the physical sexual abuse, the child exposure to childhood violence within the home and environmental adversity. And so environmental adversity is exposure to essentially violence within the community. Those have all been linked to symptomology as well. In terms of discrimination, there's been a couple of studies by Hans Oh and colleagues such as Deidre Anglin that have really focused on discrimination. And so one of their papers really highlighted that discrimination or being abused by police had a significant impact on increasing risk of psychosis-like experiences. And another paper that they did as well, and they really kind of led the forefront on looking at discrimination and psychosis-like experiences, is that everyday discrimination also increased the risk of those experiences as well. And so we kind of see this loop of experiences that predate the prodromal phase and childhood experiences, substance use, and this figure literally could go on and on and on. It doesn't just end right here where we see symptomology, if you extended it further, leads to more contact with law enforcement. Substance use can also continue on, and the severity of substance use can continue on. Trauma can end up in multiple different places as well. And I think this really highlights the complexity and all of these different factors, whether they are contextual environmental factors, whether there are household factors, that really take an impact on pathways to care and symptoms and onset of psychosis. Next slide, please, Judith. When we aren't thinking about symptomology and we're thinking about service utilization, which is something that I'm very much interested in, there have been two studies that have demonstrated that Black individuals are significantly less likely to use outpatient mental health services, but they're significantly more likely to visit the emergency room in the year prior to the onset of psychosis compared to non-Hispanic white individuals. And these two studies are relatively newer. One was in 2019 and one was in 2021 that was kind of recently published. And so I think that it highlights this decreased use of outpatient services. And a couple of slides from now, I talk more about where individuals are seeking services first. And so I kind of present a lot of this in terms of thinking about pathways to care and where individuals are going to first. I think we would love individuals to go directly to outpatient mental health services. But I think Steve also mentioned a little bit earlier in thinking about access to care. Access to care is a big one that influences whether or not people utilize services, the proximity. But where also do they feel most comfortable where they will be seen immediately, which is why I assume that we see a lot of individuals using the emergency room as their first stop compared to other individuals because the access is there, even though we would not want them to go to the emergency room right away. Next slide, please, Judith. So here is a little bit, this slide really kind of talks a little bit more about the synthesis of the literature. And I'm able to have these at the tip of my fingers because a couple of colleagues and I are really just focusing on pathways to care and treatment outcomes and really diving into the literature about it. And that for Black families, family members and friends and law enforcement are primarily responsible for the initiation of treatment for first episode or first hospitalization. And so I think traditionally, we think that family members and friends are the main ones that initiate services and really influence and drive service users to kind of engage and start those services. And I think that that is primarily true. And I think that individuals have an increased risk of having contact with law enforcement. And so what tends to happen when you have this contact with law enforcement is that they sometimes are immediately hospitalized. And so that's kind of why we see a lot in the literature that law enforcement have a huge responsibility in the initiation of treatment. There was one study that found that the average number of contacts made prior to first hospitalization was three, in that family members and friends were engaging multiple different sources before they ended up going to the hospital. And what those sources were, that paper did not kind of describe. And so I present a figure later on that really looks at the pathways, one potential pathway of where family members seek out support and services first. And so it also brings us to the point of this high rate of involuntary hospitalization. And I've had the pleasure of talking to many families and service users that have really spoken to me about their experiences and hospitalization and inpatient. And it's astonishing how it is that they kind of end up in those services and their experiences during that time. But we see this high rate of involuntary hospitalization. And that can be a good thing, but it usually sometimes is not a good thing. And it has some negative consequences on people's pathways and how they matriculate forward and how they kind of engage and where they kind of end up. Next slide, please, Judith. Dooney. Hi, it's Kate Hardy. I switched out for Steve. He had to hop off. There's a question, if you don't mind me just throwing it out there. Someone wanted to know, do you see a lot of borderline personality disorder misdiagnosed as schizophrenia and bipolar? Yes. So I see a lot of multiple diagnoses across the pathways to care. And some of it is bipolar and it's not necessarily specific. So when people and families describe their pathways to care, they immediately start talking about, oh, I went somewhere and I was diagnosed with bipolar. And then a couple of months later, I was diagnosed with something else or depression. And then I landed on a diagnosis of schizophrenia. And so a big part of that leads to these delays in treatment because individuals are being diagnosed with multiple different things along the pathways to care, which breeds confusion. It breeds frustration. And it also breeds this a little bit of distrust in you all don't know what it is that you're diagnosing me with. And now I'm engaging with multiple different people. And so I don't think it's necessarily the type of diagnosis that people are getting. I think it's the multiple different diagnoses that people are getting from multiple different clinicians as they move along the pathways to care that I think have a negative impact unless a family member is strongly advocating that hold up. I really just don't think that that is it. But that requires a large amount of knowledge about the different diagnoses. But I think it just breeds this frustration along pathways to care, not only for the service user, but for the families as well. Great. Thank you. So I'm going to kind of move in a different direction and really talk about some of the figures that I had mentioned a little bit earlier about an ongoing study that's focused on family members where we've asked them to describe to us their experiences along the pathways to care for their loved one and even barriers to engagement. And so as of today, we've had about 31 family member participants that are racially and ethnically diverse. And so I really just pulled that sample out of the largest study where the majority of individuals have been females and mothers. And the average age is 46 years old throughout that study. Next slide, please. So when I was asking family members to really describe where it is that they get their supports and who it is that they kind of contact first, their first contact is another relative where they're seeking out additional support from individuals. And so if you press the next button, this shows where they go to next after the first contact. And the red arrow right here really shows that they go to another relative. And so by looking at just the first and the second context, we see a mixture of these formal and informal sources where we have spiritual leaders and relatives and family friends where people are going to. But very few individuals actually went to a mental health professional or they went back to a school counselor or they went to a primary care provider. And I think that even after these last batch of qualitative interviews that we recently conducted, the family really tries to seek out support and a better understanding from other family members is how I kind of conceptualize why individuals first go to a relative and then they go to another relative where one woman, one mother really described, no, we went and sought out the experiences from our elders in having a better understanding. We wanted to get a family history per se about what was going on in the family. Was there anybody else that had experienced this within the family, within the family tree, which is why they, she consistently went from one family member to another family member. And it was more so about getting a better understanding of what was going on in the family history. Can we kind of tie this back to something else and kind of learn from these other experiences that may have gone on within the family unit? If you press the next arrow, Judith. And then we kind of see things split out a little bit more where we kind of see the same type of informal, informal sources again, but what also comes up here is now we see a lot of emergency room primary care providers and seeking out more social supports. And so it makes you think about during this time individuals are frustrated and they're confused. And so they're more so seeking out social support, where it is they can get comfort from before they even move towards going to these formal sources. And I think that some of that is really due to the unknowing and the uncertainty. And so there's been other papers that have been published that have really talked about the frustration and uncertainty, especially around when there's the misattribution of symptoms and not knowing what exactly is going on. And I think it shows the importance of these informal sources as well. And so when I think about this and when I've spoken to other family members, it also can contribute to additional delays in treatment, where as an example, one family spoke about seeking out their spiritual leader and spiritual advisor for advice, but that didn't pan out too well. There were allegations about abuse within the home. And so there was a kind of mismatch that led to additional delays or going to a spiritual leader who also happened to be a mental health professional. And so but that is where they kind of sought out services first. But for other families, it worked out perfectly fine, where they really tapped into prayer and support. And that was a huge strength and comfort for not only the family, but also for the service user as well, especially when there was an alignment with religious beliefs. Next slide, please, Judith. So we asked family members, what resources did you receive when you did engage with a mental health provider for the first time or a formal source for the first time? And so 10% said they received resources from community resources and what was available within the community. 17% said they received resources about what was available online. So go into the NAMI website, website. 50% said they received information about suicide risk and prevention. 20% said they got information about substance use treatment, 23% about relapse prevention, and only 20% received information about early intervention programs that were available within the area. If you press the next arrow, please, Judith. But I think what was striking is that 50% of family members that completed this said they received none of this information. And I think essentially what you would like to see is that through these formal sources, families are receiving information about the availability of early intervention programs. And I think that that shows that we still have a little bit of ways to go in the availability and the accessibility of our coordinated specialty care program and finding an alternative for areas and places and agencies that don't have the capacity for a full coordinated specialty care program. And I think that sometimes it's easy for us to say early intervention, coordinated specialty care is the way to go. But these agencies need a lot of resources in order to implement a coordinated specialty care program. And so what does that look like for places that do not have those means and do not have those resources? And so it's not just about educating providers and coordinated specialty care programs, but it's also educating programs or behavioral health agencies to provide just the bare minimum of resources and adequate information for individuals to either seek out the appropriate services or referral to appropriate services that are close to them. Next slide please Judith. And there's another question I think just related to that asking, did you get any information about concerns about stigma related to reaching out to family and staying within the family circle at the beginning? Any qualitative information on this? Yeah, so stigma is a big one. I think it was stigma with family members because with the qualitative work that we recently just wrapped up, it was also stigma from service users not wanting to disclose that they were potentially hearing voices. They didn't want to be a burden on their family, so they delayed sharing that information with family members. So that was one part of it. The other part of with family members, I think it was more so of this isn't psychosis. This isn't a mental health issue. This is just a decline in social functioning. And so it was really just the misattribution of symptoms. And I think when engaging with other family members, it wasn't more so of a concern of this is related to mental health and this can't be it. I think that it just never actually dawned on them, especially for the ones that didn't have a family history of mental health, that this could be a potential concern. There was one African-American family where the service user was actually, the individual was saying, no, this is what I am experiencing. And the family member attributed that to spiritual beliefs. They were like, well, no, that's not what it is. It's you're speaking in tongues, you're touched by the Holy Spirit. And that is exactly what it is that you are experiencing. And the family member actually firmly believed that and really tried to express that to clinicians. And that actually didn't pan out well for that family member. It actually had a lot of resentment towards the clinician, just off face value and sharing that information. And so for family members, I think they actually really tried to, in the experiences that have been shared with me, really have tried to seek out whether or not there have been other issues with other family members first and foremost. And I think they really try to get their minds wrapped around that right at the beginning. Okay, so we asked family members about barriers to engagement where they really highlighted multiple different things. And some of these things we kind of know about, where we asked them about obstacles to treatment, treatment demand issues that really impacted engagement, either on the pathways to care or even during coordinated specialty care or when they were receiving services. And some of the obstacles were the combination of stresses and scheduling conflicts. In terms of treatment demands, they really spoke about confusion and lack of clarity and being excluded from participation and active engagement. Treatment relevance, they didn't have a firm belief in or understanding about the expectations. And they felt like there wasn't enough flexibility in what it is that the services that were being provided. And then in terms of the relationship with the therapist, especially from the family member's perspective was this inconsistence and infrequent communication. And they didn't feel supported as a family member or primary caregiver. If you press the next arrow, Judith. I think in addition to that, part of the scale also looked at critical events. And this is more contextual factors where family members were really, had other family related circumstances going on that impacted engagement, or there were concerns about their living environment and where they were actually living and providing a means for other family members. And then lastly, the last one that was brought up was insurance. Do we have insurance to cover what it is, the services that are necessary? And that also made an impact on whether or not individuals were engaged and remained engaged. But these were all kind of concerns that family members brought up at the forefront that we kind of summarize right here in the slide. Next slide, please, Judith. So based off some of the experiences that family members wrote, we kind of plugged this into a larger figure that kind of will come together in that earlier on, there are these misattributions of symptoms and there's hospitalizations, which is evident by those green boxes on the left-hand side. And then as people are kind of moving along the pathways to care, there's more hospitalizations and there's multiple diagnoses. And then there's changes in diagnoses and more interactions with law enforcement. And it goes back to the slides that I showed earlier where the interaction with law enforcement now becomes multiple different interactions. It's interactions from the family members because they have actually called law enforcement to help out with a domestic issue that was happening in the home. Or it's interaction with law enforcement from the service user because of an increased severity in substance use or something has gone on within the community where law enforcement was called in. In a paper that we're currently writing based on the qualitative work that we did with African-American black families, the interaction with law enforcement, there was quite a lot of interaction with law enforcement. And what family members actually expressed was this heightened concern that increased severity of substance use or aggression or violent behavior. They just generally had a fear, not of the actual substance use, but that their loved ones would engage more with law enforcement, which they automatically associated with negativity, primarily because they were black. And so this adds this extra layer of heightened awareness and heightened concern along the pathways to care that in addition to thinking about their loved one's diagnoses and the services that are provided is how they would be interacting with other individuals within the community, especially law enforcement, added an extra level of concern for their loved one and anxiety. And so at the end of this pathway to care, we have people link into outpatient mental health services or coordinated specialty care programs. Next. So we pulled in a lot of the other data from that particular survey, where throughout that we have multiple sources or contact with support or multiple sources of support, such as religious leaders, community support groups or online support groups. And then we have multiple contacts with mental health services and even behavioral and social services that happen within there. And so, as I mentioned earlier, we have these positive and negative experiences that occur along this entire pathway to care. And then we see on the right-hand side, right underneath the triangle here is, these are the barriers to engagement or what individuals thought as, these are the things that are preventing me from engaging or preventing me from seeking out services. And so, as I mentioned, some of those things were scheduling conflicts, the combination of additional stresses in terms of other demands within the family, like taking care of other children, going to work. Other things about that were scheduling and being excluded, which I had mentioned a little bit earlier. And the family members really honing in on, they generally didn't feel supported as a family member, which is a little bit different from them feeling as though their loved one is receiving support. And so, that really impacted their engagement and their willingness to initiate additional services or even just move along through those pathways to care. And so, I think the other part of that is, we tend to not think about the other life stresses and events that are kind of going on in an individual family unit that are outside of seeking services and managing and hospitalizations and all of those things where multiple family members have told me, I have my own life. I have my own bills to kind of take care of. I have a job that I need to maintain and I need to maintain that job in order to help my son or my daughter. And so, those things also take a large toll on the pathways to care too, and whether or not people have the means and the resources to kind of matriculate through. But essentially, some individuals make it into the early intervention programs and our coordinated specialty care programs. But a lot of individuals, as I mentioned before, do not make it into those programs. And I don't know if that's exclusive for racially and ethnically diverse groups, but I'm just focusing on those different types of groups and those communities and those experiences. And some of those experiences are very unique to the Black community or African-Americans or Latinx community, but those are the pathways that have really been described to us and the feelings and experiences along the way. Okay, next slide, please, Judith. Are there any questions? Yes, there are. Thank you. Just going back a couple of slides to the family pathway piece. Did families need translation on materials in other languages and was maybe lack of access to translated materials contributing to the 50% of families surveyed who did not receive resources? I think for this particular survey, that was not necessarily the case. I think that that can be the case. I think the lack of translated materials can absolutely be a part of it. To why individuals just don't receive materials or guidance or additional, I said materials, but yeah, additional resources, letting them know about what is available because there also may not be services that are available that are in a particular language that is needed. So that I think is absolutely a valid reason why individuals did not receive the necessary resources. In this particular sample, I don't think that that is necessarily the case simply because everybody that completed the survey had to be English-speaking or Spanish-speaking. And so it wasn't something that was necessarily brought up as a major concern. But I do see that as a concern, especially for various different ethnicities, even in the black community, as well as other racially and ethnically diverse communities. And I think it's the issue of knowing who your community is and what community you serve and providing necessary materials for individuals that potentially may come in. And so for some places that could be a vast array of provided resources, but I think that it's kind of our job and our goal to make sure it is accessible or to at least provide information knowing that we're serving a community that a large proportion of individuals speak Spanish. But I think that's kind of where we stop. So not a lot of the times where it's like, no, we need to provide things in English and Spanish, but we're not thinking about the multiple other languages, which can be a lot. But I think that that's equally important to provide, especially for family members that are monolingual and even immigrant service users. Then this is another question here about, oh, hang on, it moved. Yes, can you say anything about perceptions of treatment or perceptions, sorry, of the relevance of treatment? Yeah, so the relevance of treatment, I think was more so around, let me go back to that on my end. When family members mentioned that, it was more so about the expectations that are not met. So families come in with a particular expectation or the expectation of what services are going to be provided. And they felt as though that those expectations were just not adequately described in their first meeting. And so that was one of the questions that they had in terms of the treatment relevance. And then the lack of adaptation to new issues that the loved one brought about or additional issues that come up while receiving treatment. And so I think that coming into a program, there is one specific goal. And so what individuals are saying is along that pathway and along while receiving other things become an issue as well. And so making sure that treatment is flexible enough to address those issues as well. And so sometimes it could be a vast majority of issues. And I think for a lot of people that may be on the call, it could be, no, we're coming in with this concern about psychosis, but we also have an issue about substance use as well. Is this treatment flexible enough where, fine, we're addressing psychosis. But I also wanna address the fact that I wanna, I don't want my loved one to use substances anymore. And so I think it's having flexibility around that part of it in terms of treatment relevance and having that be adequately communicated to family members and service users at the same time. I think that that was one of their biggest concerns when they had mentioned that. Okay, so now we think about, well, how do pathways impact process and treatment outcomes in coordinated specialty care? And so I'm gonna talk about two particular studies that really look at coming into a program and racial, it's really actually focused on black African-Americans looking at these baseline differences and then even quality of life. But I will say based off the work that Bashawn Davis and Deidre Anglett and I are kind of working on, there are not a lot of papers that look at racial and ethnic differences or do racial comparisons. And there are also not a lot of studies that really take an emic view to a particular population and really kind of honing in. I think we know that some of these disparities exist, but it's kind of fine tuning what it is that we're going to address. And so I think over the course of several years, there's only been about seven or eight papers that actually have taken a look at racial, looking at racial comparisons in terms of treatment outcomes. And so I'm just gonna present kind of two of those papers so you can kind of have a better idea about the differences in terms of clinical outcomes when people come into programs. Next slide, please, Judith. So this paper by Arun, who is a postdoctoral fellow out of Boston, really, it was published a couple of years ago and it was one of the first papers that really looked at racial and ethnic differences in using the RAISE data. And so she looked at baseline differences. And so if you press the next arrow, you can actually press the next coupler. Yeah, right there. And so she really looked at and pulled out of that data, black individuals and compared some of their outcomes to white individuals at baseline. And so really that kind of gives you a snapshot about how people are coming into the program and what those pathways are and how that may impact it. And that's kind of how I kind of take a look at when people are looking at baseline data. And so what she found was that black individuals with FEP had more severe symptoms and lower quality of life compared to white individuals. And as I mentioned, I feel as though that that shows the different experiences of black individuals prior to the receipt of coordinated specialty care. And so she kind of goes on to talk about PANS and neurocognition impairment throughout that study. But that one was just a really good study looking at these clinical outcomes and the differences in these clinical outcomes at baseline. Next slide, please. The next study was conducted by me and a couple of colleagues of mine that really looked at, because I'm interested in family, families and engagement and contact is whether or not if families had contact with a mental health provider prior to care, did that actually have an impact on their quality of life during care? And so what we found in that study is that for participants, for black participants that had a family member who met with a provider prior to treatment, they had higher quality of life scores throughout coordinated specialty care, as opposed to family members that didn't have contacts. They had lower quality of life. And I think in the RAISE data, a large proportion, like more than 70% of black families, and families in general really, did not have contact with a mental health provider before starting coordinated specialty care. And so that was just a really interesting thing about the importance of, one, having family members engaged earlier on, on along the pathways to care, and really the importance of black families and having black family members being contacted. So these same findings were not found for white families, which just, it kind of just shows a little bit of the importance of the black family unit and the importance of that, not just during coordinated specialty care, but during that pathways to care as well, making sure they're adequately involved in care because it has an impact on their quality of life in care. Next slide, please, Jada. How am I doing on time? Oh, we're 10.30. I think we're going to about 10.45. Okay. By the way, our West Coast time, I have another question, if you don't mind. Yeah. So in the Q&A here, someone's asking, we recently had a black client who did not want to engage in services unless a clinician was available. Have families or clients ever expressed similar feelings in your studies, and can a lack of diversity among clinicians present as a barrier? Yes. Yes. I think that for some families, it doesn't actually matter the diversity of their clinician, as long as their loved one is receiving care. But for some families, I think it absolutely matters in how much they're willing to engage and how much they're willing to share information. And I think that there's been several families that have expressed that, but there's also been several families that are, when we've asked them that specific question, they're like, that doesn't phase me. It doesn't phase me either way. But I think it's more so about not having the assumption that because, so for an example, one black family, her mother mentioned, she was like, oh, a clinician was talking to me as though I was from the South, and she had never lived in the South. And her clinician was white, and she was like, oh, do y'all say y'all, and do you eat cornbread and things like that? She took offense to that. And so I don't think it's necessarily if the clinician is black or white. I think that you can have some individuals that prefer that because it brings them a sense of comfort so like I have noticed, even when I do qualitative interviews, and I read transcripts with black families my conversations with individuals are very much different than if my white colleague is doing qualitative interviews with black families. And I think that that is just because of a sense of ease in which they feel comfortable talking with me. And I think that for some people it doesn't, it doesn't matter, but I do think that that comes up and I do think that for some people that is equally important, just because I think you have a sense of understanding the layout of the community and what somebody may be experiencing so another example is there was a family in Oregon. That spoke about. We all know that education and employment supported education and employment vocational services is one of the pillars and coordinated specialty care and they spoke to the clinician clinicians not having a better understanding about discrimination in terms of living within a community that is predominantly whites, and the goal is to get a job. But the community is slightly racist and they're not trying to hire their son because their son is black. And so having an understanding about how you navigate that as a clinician in talking about the potential discrimination and how that could be a barrier to employment. And I think that that was glossed over and that was something that was a major concern for families that they felt as though the clinician just didn't understand because their clinician is white and the community is predominantly white. So, um, but they didn't feel comfortable enough, actually sharing that with a clinician. And so I think those type of things come up and I think that there's a different level of rapport and comfort that comes from having someone that when there's a racial concordance in terms of a clinician and, and a client that I think for most clinicians even if the clinician is white, they can overcome a lot of those different things but for some, for some families that's extremely important representation is important. Okay. So we have about 10 minutes and so I'm going to move through these last couple of slides. If you go to the next slide please Judith. So improving pathways to care for CSE. When we asked family members how could we improve the pathways to care. These are some of the things that they kind of mentioned in terms of support they wanted more supportive interactions. They wanted more positivity in terms of describing services and the trajectory for their loved one. And then one of the biggest ones that came up multiple times is for coordinated specialty care programs to work more with colleges and employers in terms of engaging and thinking about different types of jobs and thinking about obtaining a college level degree and things like that but the other part of that is working with colleges to identify individuals who may be in college. And so making that referral pathway from colleges, a little bit more streamlined into coordinated specialty care. Another major thing that came out of that was knowledge, and basically educating community organizations about the available services. And so it's not just working with other behavioral health agencies and letting them know that these coordinated specialty care services exist, but it's also working with community centers and letting them know that this program exists and providing flyers and services and doing presentations there and I think that that is equally important is making sure that within the community, people know that your services exist, and not just among mental health agencies and so here in Washington State that's something that we have really tried to make a move on and make an effort and really engaging with the criminal justice system, engaging with the foster care system engaging with other community based organizations, such as schools to really increase their awareness of what psychosis is and signs and symptoms and screening, but also making a streamlined referral into coordinated specialty care. So that was a big part of that as well and so, and then the other knowledge is the, the availability of resources and services within the community that are not just focused on coordinated specialty care but what support groups are available within the community and other support groups that are available. And then access availability of services. One of the biggest things that I have kind of moved towards is really thinking about the availability and where coordinated specialty care programs are being placed and where they're located. Are they located in more urban urban areas. Are they located in areas that are close proximity to predominantly black or Hispanic populations and so a big part of that is, is there enough access to services. And it's not just about the proximity of those services in terms of accessibility. Are they actually available. And where they're being located or are they kind of clustered in a certain places located throughout your state. And so there are some kind of quotes on the side of the last quote was the one that I was kind of talking about which I was able to speak to that person a little bit more in terms of their son within the community and not being hired within the community about about diversity. Next slide please. So addressing pathways to care, you go to the next slide. I'm going to kind of talk to you a little bit about social determinants of health in my last couple of minutes here. And so I found that this definition of social determinants of health was fantastic. And that's SDO HR inequities and health and our avoidable health inequities that arise because of the circumstances in which people grow live work and age and the systems that are in place to deal with mental or physical health. And so one of the reasons that underscore all of these inequities is really because of social determinants of health, that we find that there's inequities and pathways to care or access and availability and even service utilization. And so what do we mean by that, most of these disparities are avoidable, and they're avoidable health inequities that arise because of the definition that is kind of given here and I think it's important. The other important thing about social determinants of health is that these inequities are based on structural racism, and that we have to be deliberate in the research that we do, and the practice that we provide, so that we can, so that we are able to close And so we spend so much time at the end, at the tail end, which is disparities such as access to care. But there are all of these social determinants of health that are really affect the ways in which individuals and families engage with the mental health care system. And so, if you're thinking about that in terms of your research and how you kind of address that you can incorporate multiple different levels of influence to kind of prevent the existence of these well known disparities that we have and so in the next move through these different levels of influence so you can kind of think about what things kind of align within them and I think as we progress in research we're, we're moving beyond just looking at individual level factors but we're trying to make sure we incorporate into personal factors community level factors and then society level factors and how all of these things kind of contribute and if we aren't addressing all of these things that we're not going to get to the crux of reducing and closing the gap on these disparities. Next slide please student. So, the National Institute of Mental Health and Health disparities has this really good health disparities, kind of social determinants of health framework that I really try to pull from where they're looking at it in levels of influence and at different system levels as well. And so if we're thinking about the complexity of it. We know that we can think about insurance coverage and treatment preferences right and so if we're thinking about in terms of water individuals treatment level preferences really engaging with individuals and letting them know that there are different, different types of treatment available, but really also listening to the different preferences as well. And I think that's sometimes why we think about and I see this more so in substance use research, where you're engaging the black community, you're engaging the black community you're engaging black churches, in order to provide different types of treatment, and in order to engage individuals a little bit better. And so thinking about those treatment preferences, especially for individuals that have a heavily reliant on on the church like in the black community is my parents live in the south and the black churches is a really big thing for my parents, and everybody knows the church that it is that they go to and they have different ministries that are focused on mental health and HIV and they're really embedded within the community, but individuals, a lot of times, and I think this is evident throughout research is they go to the spiritual leaders first. And so that is why I think in substance use research we see a lot of intersection between providing services that are delivered through through the church, or using that as a hub to kind of deliver our screen individuals early on. Next slide please. So we have this interpersonal level of social determinants where that can include the relationship between individuals, families and clinicians plus the household environment. And this is where you can think about culturally informed care is is being really important and building rapport that can impact utilization and engagement and health services. One of my studies, we are looking and using the cultural formulation interview which is something that on track New York users within their within their program. That is something that even just asking the questions about culture or asking the question about preferences and getting a better sense of what has worked and what has not worked does a lot, whether or not you even use that information to inform to inform the treatment that has just been shown to build rapport with families and with service uses and I've had other colleagues use that with other populations. And just asking the questions is is a lot where all of a sudden, a family members are just divulging a lot even if they don't identify with a particular culture is the fact that you're asking what support systems have worked before. What has not worked. What are your family dynamics like how do you conceptualize psychosis within your family unit. What is important to you, in terms of spirituality or community or anything like that and so those things are just super important for family members just to be asked those questions, but they're also very, very telling that can really impact the relationship between a clinician and a patient. And you're also getting a larger insight into household environment as well. How this has impacted the family dynamics, which is equally important to care. Next slide please. So then we have this community level focus, and I think the underlying assumption of focus is that I like this quote from Dr. who says that if you can build it, they will come. And this is only one study that I know that has really just focused on a racially and ethnically diverse community. And it's, it was a large are one from the National Institute of Mental Health, but I say that because after that there is not being a lot of research that is focused on pathways to care for other racially and ethnically diverse groups who have more And so, with his study he really looked at community norms and he embedded that and he really used the community and CBPR approach to really focus and tailor and improve that pathways to care and reduce that duration of untreated psychosis and so if you're ever interested in the Hispanic population and what has worked, I think, looking at Dr. Stephen Lopez's work is is a really good kind of place to start. The other part of that is the availability of services which I mentioned a little bit earlier. And that's where we choose to place services is equally important, and that is at a community and if not at a societal level. And I think that that interacts with multiple different systems such as the health care system, and that has an equal part in to why disparities exists, especially around access to care and the receipt of services. On a policy level, thinking about where and what criteria is involved in how we choose to place our coordinated specialty care programs, especially as they're funded by the Mental Health Block Grant. Where are these programs are being placed and are you actually meeting and addressing a particular need for individuals that do not have access and so I pose for a lot of different people in various different states that are represented on this call is to really think about what's the criteria outside of agency level criteria to kind of manage a coordinated specialty care. What is the criteria for where your coordinated specialty care programs are being placed within the community and not just are we serving a particular county, but where are they going to be placed within that county is equally important. Next slide please Judith. And so, then we have the society level influences where structural racism in society, whether it's institutional organizational or governmental structures hinder access to opportunities and resources for racially and ethnically diverse groups, and I think that contributes to the onset of psychosis, I think it contributes to help seeking processes afterwards and I think it absolutely contributes to what the step down from coordinated specialty care and after services, and I think that those things are things that we tend not to think about a lot because it's really hard to address and racism and discrimination run through all of these different levels of influence and so that's just one thing that I think that we absolutely need to think about in terms of how discrimination and racism have an impact at the individual interpersonal and community level, and how we address that, and I think that there has been a push for so to think about how discrimination and racism impact care and how we can use tools to really assess that for individuals coming into the program, and not just for racially and ethnically diverse groups, but just diverse groups in general. And how that impacts their decision making with treatment options during care is equally important. I think I remember I had a clinician who asked me, why do we need to do a discrimination tool it's not a clinical tool. Well, one, because research has shown discrimination absolutely has an impact on service utilization and treatment outcomes. So understanding individuals experiences early on, I think is absolutely important and I think if we choose not to understand those experiences right at the forefront I think we're kind of doing our patients a disservice, especially when those experiences are currently impacting their decision making, whether it's around medication, whether it's has anything to do with their level of engagement and because family members and service users do not live in coordinated specialty care, they live in this greater world where they're not sheltered by discrimination and they're not sheltered from racism. And so these are active things that are absolutely happening in our lives, just as though the pandemic kind of impacted everybody else. Everything that happened last year in terms of people dying left, right and center and the racism that has come to the forefront and a lot of different things has an impact on our families and service users and how they view that community that they live in and how they choose to engage. And so, even though structural racism is right there in societal, please think about that in terms of the individual interpersonal and community level as well and how that actually has an impact on not just individual level outcomes and family level outcomes, but also these contextual factors as well and how people choose to kind of maneuver throughout the community engage with certain different groups. So, that is, I have these upstream downstream kind of things, but that is really the end of my presentation and I feel like I'm right on time, Kate. That was awesome. Thank you so much. We got extra of you and that is never ever a bad thing. Thank you. I loved it. I know folks may be hopping off, but are there any questions anyone wants to just quickly post? It was great to answer the questions as we went along and sort of answer them in the context, but anything that anyone has. I know there's always questions about how we get slides and recording. This will be available on PetNet's website in about two to three weeks, so keep an eye out for that. But no, this was fantastic. Thank you so much. I don't see any other questions coming through. Thank you. All right, and I think we've got the claiming credit. I think we're done. Thank you, Denis. Really appreciate it.

racially diverse families

accessing mental health services

early psychosis

family history

substances

trauma

discrimination

improve pathways to care

reduce treatment delays

culturally appropriate interventions

early intervention programs

systemic barriers