Hello and welcome. I'm Dr. Benjamin Dress, Professor and Rosalynn Carter Chair in Mental Health at the Rollins School of Public Health at Emory University and Health Systems Expert for SMI Advisor. I'm pleased that you'll be joining us for today's SMI Advisor webinar, Strategies for Improving Client Engagement in Psychosis Services Across the Lifespan. SMI Advisor, also known as the Clinical Support System for Serious Mental Illness, is an APA and SAMHSA initiative devoted to helping clinicians implement evidence-based care for those living with serious mental illness. Working with experts from across the SMI clinician community, our interdisciplinary effort has been designed to get you the answers you need to care for your patients. Today's webinar has been designated for one AMA CRA Category 1 credit for physicians, one continuing education credit for psychologists, one continuing education credit for social workers. Credit for participating in today's webinar will be available until August 3rd, 2023. Slides from the presentation today are available to download in the webinar chat. Select the link to view. Captioning for today's presentation is available. Click Show Captions at the bottom of your screen to enable. Click the arrow and select View Full Transcript to open captions in a slide window. Please feel free to submit your questions throughout the presentation by typing them into the question area found in the lower portion of your control panel. We'll reserve 10 to 15 minutes at the end of the presentation for Q&A. Now, it's my pleasure to introduce you to the faculty for today's webinar, Dr. Nev Jones. Dr. Jones is a community-engaged mental health services researcher with an interdisciplinary academic background in social and political philosophy, community psychology, and medical anthropology. She is an assistant professor at the School of Social Work and the Department of Psychiatry at the University of Pittsburgh. Thank you so much for leading today's webinar. We're really looking forward to it. OK. OK. Thanks, Ben. And hi, everyone. So I think I am just supposed to mention that I have nothing to disclose. Briefly, these are the learning objectives for today's webinar. Explaining at least a couple of different ways in which cultural differences, culture understood in a very broad and multifaceted sense, can contribute to disengagement. Ways in which systems-level experiences, for example, of structural racism and other forms of structural disadvantage can contribute. And strategies for strengthening kind of visible cultural and structural humility in mental health settings. And rebuilding trust with individual clients in cases in which, as is often the case as you're working across the lifespan, trust and kind of relationships to the system and to mental health services have been eroded over time. OK. And this is a 45-minute webinar. So some of this material I'm really going to summarize in a more high-level way. Like there's a very long slide deck, if you download it, that you'll see. I'm not going to go through all the material in detail, but I didn't want to remove slides. So some of it is going to be a bit more of a high-level summary. And in other places, I will dive in more depth. Also, just a caveat here is unfortunately for the last two days, my internet connection has not been ideal. I want to kind of stay on for just a little bit so that you can see me and see me talking. But at some point, I may just kind of turn off the visual because it's freezing up. And if we need to kind of switch to, if I need to switch over to the phone, I will pause and just let you all know that that's happening. But so far, the audio has been fine and just visual is the problem. OK, so agenda. So I'm going to just start by sharing a little bit about myself and my positionality. That is how I am kind of positioned in this space in the context of this topic. A few slides really on kind of defining and unpacking disengagement. This is a term that we use a lot in the mental health system. What do we mean? What are the variations? How much of a problem really is it, especially at a systems level? Why spending a little bit time thinking about why people disengage and the kind of many and complex reasons why somebody might disengage from mental health services. And then what we can do, and this is really the bulk of the time will be spent like just kind of really thinking about strategies for changing and strengthening current practice. Big caveat, I will probably repeat some kind of version of this caveat multiple times. There are absolutely no easy answers when it comes to disengagement. I think it's fair to say that we have disengagement. I think it's fair to say that disengagement is a true like wicked problem or hard problem. It is multifaceted. It is incredibly complex. It plays out across all aspects of the mental health system and associated systems like social welfare, criminal legal systems. And I think any kind of single intervention that we researchers might kind of study in a discrete clinical trial is at best gonna be really, really partial in terms of its contribution to sort of the magnitude of how challenging this really is. Okay, so a little bit about me. So I kind of, I can't quite claim to have worn all the hats in this space, but I've worn a lot. I grew up in a household with severe schizophrenia. And so from a very, very young age, I have grappled with and was forced to grapple with the problem of kind of disengagement, whether that takes the form of kind of distrust, lack of recognition or agreement that there is a problem that we would define as say psychosis or schizophrenia. And then the various forms that sort of, right, disengagement with the system or with different facets of the system can take the sort of the slide into involuntary or coercive interventions as a result. And then I would say, you know, kind of painfully witnessing across my entire life up to this point, literally the consequences of not just disengagement itself, but really sort of what is behind it. I had, you know, all these experiences just kind of growing up as a kid, I had to call 911 for the first time on a close family member when I was 18 or 19, feeling, you know, really, really desperate because the person in question, I felt like they were close to death. And the police officer showed up and basically, you know, the state criteria for an involuntary or emergency hold weren't met after just sort of like cursory assessment, right? And he left. And I think that really just kind of encapsulates one side of what is kind of so wrong and the position that family members as well as providers are left in. Then I went on to be diagnosed with schizophrenia myself. And so that was a completely different experience, not as a responsible family member, but as the, you know, kind of individual being routed through inpatient, outpatient, crisis services, involuntary treatment, et cetera. And that gave me a different kind of perspective on these issues and on, of course, the interface between the individual and the service environment and that service environment from a service user perspective, not just being this or that one provider, but you're interacting with many, many different people in different ways. And all of that influences what you think about treatment or the system and your own potential kind of preferences for engaging or disengaging. And then I, you know, kind of finally got back to school. I still remember my PhD is in psychology, but then I did a postdoc in anthropology. Then I worked for state government in California as a policy lead. I was the acting consulting psychologist for the Mental Health Services Oversight and Accountability Commission in California. Then I worked in a real world large mental health agency based in San Francisco, kind of overseeing and contributing as leadership to implementation and quality improvement and evaluation across multiple counties, and then kind of returned to academia, to a university setting with a very strong research focus. In tandem, I have co-founded and co-led three different peer-led nonprofits, two of them regional hearing voices networks in which a lot of what we did was individual training and consultation with local providers, really trying to think about how to improve services and in particular engagement with folks experiencing psychosis within their programs. And then also a lot of work with family members who are often the most sort of desperate if they don't have training or background in the area. And they're really trying to figure out what to do often under very difficult circumstances. And then in terms of my kind of academic work, a lot of that perhaps unsurprisingly after the sort of narrative I've just given you has focuses on disengagement. I think it is such a fundamental problem and really thinking in a very real world way about what it means to sort of change practices and change systems in a way that we are better able to support a greater number of people. So that's kind of me and who I am. I think I would also really want to emphasize how I have kind of kept that narrative relatively kind of high level, but I do want to kind of signal that I really have kind of been through it personally in terms of being forced to kind of to grapple with the complexities involved in kind of psychosis, schizophrenia meets mental health services meets the desires of different parties to intervene and be supportive. And it's just very, very difficult, very difficult. So just then seguing to write sort of a taxonomy of disengagement or just thinking about what we mean by a term that often kind of gets used in a relatively expansive way, meaning that it really often is kind of signaling or including a lot of different things. So one level at which we can think about disengagement is somebody's kind of psychological investment in relationships with the providers, individual providers they're working with, with processes, so like a therapeutic process. So you might love your therapist as a person and be very attached to them, but not actually be invested or believed in the therapy that is going on, or you might love a psychiatrist, right? But not want to take the medication. So again, even at that level kind of separating those things out and then kind of broader services or service models. You can, of course, be court ordered or compelled in one way or another into services, but without psychological investment in them, without kind of self-motivated participation. Then there's just sort of like how regular contact is. So I think in the mental health system, sometimes we use disengagement in this way, is somebody regularly showing up for scheduled appointments? And many programs, as I'm sure you all know, you would be administratively discharged at a certain point if you've been a no-show for the program for kind of for too long. Engagement can take the form of sort of selective disclosure or non-disclosure. And so I run into this a lot in work. I do more focused on youth and young adults. With clients who will share and disclose, let's say depression, anxiety, maybe even psychosis with their provider, but not suicidal ideation. Sometimes that's because of a fear of being placed on an involuntary hold order of some kind. So they are engaged in certain ways, engaged and open to the process in certain ways. And in other ways, selectively disengaging and not disclosing information that in the grand scheme of things we would generally think of as actually very important to be supporting somebody with and supporting them through. Medication non-adherence specifically, right? Which is a really, really, really incredibly common issue in the context of psychosis specifically. And somebody may be happy to engage in other service components, even have good relationships with people, but not want to take medications and not take medications. Then there's total disengagement from mental health services. So this is somebody who perhaps then as a consequence ends up unhoused or in other cases may be in a sense kind of sheltered and supported by family, completely divorced from mental health services. And in some cases that might extend to other kinds of health and social services. So they may also not be attending or engaging around physical health, disability, SSI, SSDI, other forms of income-based support, or it may be more selectively that they're detaching themselves from mental health services but not health and social services. Engaged only as necessary. So to the extent that a particular service is court ordered or mandated or during a period of inpatient commitment, right? There's a sort of a de facto engagement there that may then immediately end as soon as that court order or mandate is withdrawn. And then discharge for other reasons, right? A whole category that is really due to, kind of socio-environmental and structural barriers. Somebody has moved out of a service area or they've not technically moved out of the service area but moved to a area in which there's not public transportation or that's less accessible, all kinds of transportation barriers, incarceration of self or a close family member, maybe the family member who is really responsible for staying on top of appointments, loss of qualifying health insurance. So again, in the US system, I sort of put this into an other category. This is not really what we're talking about here. I think it's more kind of straightforward in a sense to troubleshoot these kinds of barriers to say kind of attending or engaging with services. And the others are more about people making choices, often kind of choices based on how they understand what they're experiencing or the experiences that they've already had. But it's important and I think a lot of the time in data collection from a research perspective, we mash all of these together. And so that's one reason why it's harder to interpret data in a way that really kind of translates into clinically actionable insights. So these are just examples. I don't wanna spend too much time on this. So just read a couple of these. These are quotations from qualitative work I've done. I do a lot of mixed methods work on disengagement. So I have lots of material to draw on for presentations like this. So psychological disinvestment in the therapeutic process, I go through the motions mostly, but I don't actually think any of it helps. So there's not any real belief that the therapy is helping. But my therapist is nice. She's she's pretty. And again, this is a this is a real a real quote. Different versions of contact, like technically, yeah, I go I have to because of disability benefits, whether that's real or perceived. And sometimes people perceive that they have to attend when actually they don't have to, but they think that they do. And that's really the motivation behind the regular contact. Okay, I'm not going to read through all the rest of these. How much of a problem is disengagement in some contexts? And I don't know who all is out there in the audience. Sometimes I feel like it's it's odd. You know, people know who are working in contexts in which they see this more visibly. I definitely give presentations sometimes where people are not really aware that disengagement is as large of a problem as it is. So when we look, you know, even at sort of kind of evidence-based practice program models, like early intervention in psychosis or coordinated specialty care at US sites, the average is a 40 to 50% disengagement rate by 12 months before the client reaches 12 months. And I have seen anything from 60 to 80% by 24 months with some programs that have much lower rates. Per the National Comorbidity Survey, only half of those with symptoms consistent with SMI had received treatment in the prior year. Per the new prevalence study, this just came out from sponsored by SAMHSA this year, only 58% of individuals with a schizophrenia spectrum diagnosis had received any outpatient treatment in the prior year. And that's any we're not getting to the sort of kind of more granular level, right? But this gives us a big picture sense of what's going on. Katie on the sort of medication adherence notes, this is a huge one of the largest clinical trials of antipsychotics in the last couple decades, found that 74% of patients had continued their initial study medication before 18 months. And a recent meta-analysis found an average medication non-adherence rate of 56% in the context of schizophrenia. So I think it's fair to say that actually probably the majority of people by some measure of disengagement with schizophrenia or with, you know, long term psychosis are disengaging, they are disengaging from services. So that is really a huge problem, a huge, huge problem. And a complex piece of why outcomes here and in most of the world, really remain so kind of recalcitrantly suboptimal, why we see we see such high rates of unemployment, we see, you know, kind of distrust and withdrawal, homelessness, incarceration, right, ending up in the institutional circuit, as Kim Hopper puts it. And I just wanted to, again, I just want to kind of substantiate a little bit because I am, I am a researcher. And so again, best best practice, coordinated specialty care for early psychosis clients, you're intervening early, coming in with a strongly recovery based approach, holistic wraparound so in a sense, it's sort of in that kind of team values built into the model kind of way, this is about as good as it gets in the real world. And I just want to kind of show you then what we see. So this is actual data from now 1458 clients enrolled in coordinated specialty care in New York. Now this is everybody discharged. So just kind of a technical caveat is that we can't estimate this should not be taken as a total rate of different forms of engagement disengagement because this is a an ongoing service program. And so clients who started at the same time as some of the more recent dropouts are still going to be in the program not reflected here. So these rates of discharge or disengagement are at least somewhat higher than they actually would be if we if we could kind of fully account for or sensor sensor the data as we would say more technically. But nevertheless, if we think of this even just in terms of sheer numbers of these 1458 it's about 40% who completed the program 34% unilaterally terminated. So that's how their clinicians, you know, kind of recorded their discharge at the time they were discharged. A further 14% could not be contacted. And often in the more detailed notes that that clinicians left that was somebody, you know, just refusing to, to return phone calls. So you could say it's in many cases, a passive form of client termination, not necessarily telling the program, I never want to see you again, but you know, refusing to respond. But in other cases, the person might have died, there's, you know, all sorts of things that can be sort of kind of masked by an inability to contact them or reach them in any way. And then we see kind of moving and other other, including actual direct incarceration of the client, suicide, etc. So in the in the grand scheme of things, it's a much smaller group. And the average length of treatment in the two, so we kind of broke this down into groups with similar patterns of kind of experiences, demographics, and the two groups with almost kind of universally high grades of non completion, that is only 6.7% completed the program in group two, only 8.9% in group three. So if we want to understand sort of disengagement, these are sort of the groups to really look at their length of treatment ends up being really kind of substantially substantially lower than the groups with higher rates of sustained engagement. Just in terms of some patterns here, I'm not going to spend a lot of time on this, but being younger, being black, as opposed to white, and I'll get more into this, right? Because, you know, and then being on Medicaid or uninsured are all things in the data that put people at greater risk of not completing the program. Okay, and this is just kind of summarizes what I said, and then education, which is, you know, a way of getting that kind of class background, class context, and all the forms of social disadvantage that shape access to education, and duration of education, highest level of education achieved. So in predictable ways, right, we see socially marginalized positionalities and experiences of disadvantage feeding into this problem of disengagement in a really significant way. Okay, so again, you know, the researcher in me, you know, wants to make sure that this is really kind of grounded in realities, I'm not, you know, just kind of speculating based on anecdotal observation. What do we know then about the consequences of disengagement at a systems level and disengagement here, I'm using in a way that is not meant to imply that this is the fault of people that individuals are making bad choices. But what does this lead to this phenomenon of disconnection from systems or services, homelessness, incarceration and criminal justice system involvement, unemployment, poverty, higher rates of acute care, you know, we all know this right, when people are unable to receive or access or don't want to access kind of ongoing services and supports, they're likely to where that when there is then a crisis, it ends up being treated in an acute setting, or often involving involuntary or civil commitment or an emergency hold, right, depending on the language of the state, negative impacts on family members, who often end up spending a lot of time trying to figure out how to get people engaged or connected to services and supports that they might need. And also just the difficulties when family members end up often taking on so much of the burden or challenges of what we could call in some sense, a broken system. And a lot of that burden really gets shifted onto families, and then with intergenerational impacts as well, that sort of fan out. When I was a graduate student in Chicago, we worked really closely with the Heartland Alliance, one of the largest homelessness providers in the US. And back then, she's no longer the executive director. But the executive director used to say that almost all her clients had actively disengaged from mental health services prior to becoming unhoused. A lot of the time that was tied to negative experiences in inpatient environments. And that was sort of the primary first order challenge for them, right is trying to win people back over, reestablish trust after this sort of this history and its its legacy. Okay, and then some kind of further dimensions, especially in the context of psychosis, that I want to kind of briefly mention, lack of insight, right? If we don't talk about it, it's the elephant in the room. And what we call lack of insight, again, actually meaning different things in different contexts are being used in different ways, functionally in different contexts, but disagreement with the psychiatric interpretation or disagreement with diagnosis. So self perception that I'm not sick or not mentally ill. I don't have a mental illness, sometimes people will admit to or explain their experiences in terms of physical health problems. So it's not necessarily all of health that's being denied. But that taking a mental or psychiatric form and or can involve disagreement with perceived need for treatment. And again, that's a complex one when you really interview people, ask them to unpack it real range there in terms of their very thoughtful analysis and rationale behind why somebody feels based on their experiences and their self perception that a program that is, we might think of as otherwise evidence based, but they don't perceive it as helping them as meeting their needs is aligning with what they want. Or it can, again, be due to a more primary, I don't even have the thing in question that this program is treating, that's something I hear a lot, I don't have psychosis. So of course, I shouldn't be in this program. So that lack of insight dimension can certainly kind of play into the wicked problem of disengagement. Concerns with medications can be quite complex as well. So that might be tied to short term side effects, but also long term side effects. And we tend to only measure short term side effects, even in research on the topic. But people might be not so bothered by what they are immediately experiencing. And it's more a fear of the effects of long term, say, antipsychotic use, perceived lack of efficacy. And again, that may be very real, because as we know, not everybody actually benefits from antipsychotics. So it could be sort of more of a subjective perception, it could be, you know, really objectively the case. Incompatibility with worldview, I think we we see this across the board in some, you know, kind of public community attitudes towards vaccinations, for example. So it's not just psychiatric medications, but it can be kind of incompatible with their worldview. That can be true for cultural reasons. So some of my projects have tried to really kind of dig in around instances where not just clients, but actually their families are disengaging from services, their families are withdrawing the client. Because a kind of medication centric intervention framework does not fit their kind of cultural explanatory framework. Conspiracy based concerns, and you know, obviously, that could fall under what might otherwise be labeled delusions, right. But as we see in, for instance, the anti-vaxxer movement, right, there is a lot of public kind of uptake of kind of conspiracy based thinking. And there are major politicians who, you know, who are actively encouraging and supporting that. So it's not just as simple as somebody who's experiencing psychosis, this really kind of permeates culture now, and in particular, certain communities. Negative experiences of treatment is a really big one, right? And that can include kind of perceived betrayal. I think sometimes people are very negatively impacted when they actually have high expectations, or felt like they really made a decision to trust somebody and then that trust was betrayed. A lot of people when you're interviewing them will reference involuntary hospitalization or civil commitment as their most negative experiences as contributing to driving them away within inpatient settings, sometimes also group homes, seclusion restraints, forced injections, and also, you know, other residential settings, prisons and jails as well. Perceptions that providers have cited with family members. So this is a really tricky one. Right, you know, kind of the challenge of engaging family members without appearing to be kind of siding with them against the client. Perceived lack of effectiveness. And again, I say kind of perceived, but any trial even of psychotherapy, of psychosocial approaches, even that overall, we might consider evidence based, there's always going to be a significant number of people who don't benefit at all, objectively so. And therapy, implementation in the community is so all over the place that there actually is quite a lot of really low quality therapy, or counseling being being offered, or even harmful. I hear examples all the time, for instance, around folks who identify as LGBT, having run into kind of faith based counselors who are like telling them that their identity is morally wrong. So, so you know, therapy is not is not perfect, people can have negative experiences, it can not very much not benefit the individual, feeling like the benefits of medications out, don't outweigh the risks, or feeling like services are, as one participant put it to me, trapping you in a sick person mentality. And so just kind of wanting out of that. Family factors, I'm not going to go into detail about all of these, because I don't want to spend too much time just on this, structural factors. Substance use, right, and substance use is a really complicated one. So just to say a little bit more, because why is the substance use happening? It can function as an escape from symptoms themselves, right, but also from social and family judgment, or sense of failure. So it really is an escape hatch, I think, for a lot of people. And in that sense, is actually providing a pretty powerful, welcome psychological function, even though we know it makes that worse over time. Avoidance of providers to avoid judgments about substance use. So I talked to people who are in avoiding engaging with the provider, because they think that substance use is going to come up. And is in some cases, it's fear of legal repercussions. In other cases, they just don't want to be told by somebody to quit using drugs or substances that they perceive at the time as helpful. Sometimes people think that substances are more helpful or effective than the medications they're prescribed. And then more physical escape, like in a more direct visceral somatic sense. And for people experiencing psychosis, absolutely drinking, doing drugs of various kinds can completely eliminate temporarily, right, or just completely sort of overshadow other negative experiences of psychosis. So kind of, you know, kind of physiological neurophysiological escape, if you will. Then, I think we really have to kind of think really seriously about the psychology of power. And I think we oversimplify, greatly, oversimplify this, in general, and in the way that new counselors, social workers, nurses, etc, are trained. So, you know, kind of three main buckets here. First, I think, is really kind of understanding the potential psychological and personal threat posed by capture within the mental health system. And that being particularly pronounced for somebody experiencing psychosis, where, in a sense, everything they may be experiencing, everything that pertains to perception, and their sense of reality, and the boundaries of reality, and the boundaries of the self, is being both called into question and claimed by the mental health system, by mental health providers, as they're experts over that, and everything that you think you're experiencing, you're really not. So that is a major, major, major, major potential source of kind of loss of autonomy, of control. There is the reality that, you know, repercussions, social rejection, inability to remain engaged in school and work, et cetera, et cetera, you know, swiftly, you know, kind of moves people out of these are kind of normal white valued social roles into I'm not doing anything. I'm sitting in my room all day and the only structured activity I engage in is seeing this, you know, cadre of providers, case managers, counselors, psychiatrists, et cetera. For young adults, really kind of a sudden reversal of growing autonomy and kind of milestones of adulthood. And that is a very complicated relationship. Few people want to sort of go back to being like a younger version of themselves in terms of their relationship to their parents. And that is very fraught and very complicated. And in other ways, if you are the child of a parent with psychosis or schizophrenia, that's another really uncomfortable role reversal. So any of these intergenerational role reversals, really being relegated to this healthy patient or client role, and again, often across the board for somebody who ends up having to withdraw from school, has already left school, loses their job, which again is more common than not. And now they are sort of just in that role. That is a major threat to one's sense of self and identity and not just in the individual's head, in our society. How our society constructs what it means to be a, you know, to be hitting those adult milestones does not conform. So nobody really wants to be there. I mean, there are the strongest psychological motivations you could possibly have in a sense to want to say, you know, to hell with it. Like, you know, I'm not that, this is not me. You're wrong, I want none of this. Because what people are potentially being pushed towards is really something none of us would want. So for some people, depending on their personality, their upbringing, all kinds of factors, they might respond to that though and be like, well, please help me get back to where I was. Like I embrace the help, but that's not everyone. So other people to really kind of salvage themselves and their identity, the, you know, reflexive response is gonna be to push that all away, to refuse it, to deny it. I am not this thing that you were making me out to be. And an example of that for, you know, this was a really, really striking interview that I did. I actually like, you know, kind of flashbulb kind of memory. I was working on an NIMH P50, like a big NIMH funded research center, which actually focused on medication decision-making. Again, back when I was a grad student and we were asking people about their trajectories. These were people in their fifties and sixties predominantly their trajectories of taking or not taking medications over the course of their lives to date. And this was such a striking interview. It was a very articulate man who explained that for a very long time, he felt that he knew the antipsychotics worked, that they made him better. And he said, I knew I would be better off taking them, but to quote him, it felt like survival in a different way. My dad wanted me to take them. My psychiatrist wanted me to take them. And if I had taken them, I would have just capitulated. Part of me would have died. So I didn't, I fought like hell. So again, we don't, we often just, you know, are not attending to the complexities of people's motivations and what's influencing their decision-making. And this is, I think, a really kind of compelling example of for him, what he was fighting against was this sort of engulfment by, you know, his father who had been, you know, kind of somewhat oppressive as I learned in other parts of the interview, abusive to some extent physically. And then the psychiatrist who seemed in his mind to be replaying this dynamic. And so for him, the most important thing was not being quote unquote helped by the medications, even though he felt that he was in terms of symptoms, it was putting his foot down and saying, I will not do what you tell me to, I am my own person. So again, I think if we don't develop and cultivate attention to these kinds of issues and nuances in terms of power, we are gonna lose the ability to really understand for at least a subset of people, part of what a significant part of what may be going on for them. Okay, so then what do we do? And okay, I'm gonna spend six minutes on what do we do? I know it would be challenging with this webinar to kind of try to get through everything that I wanted to in a short period. So I'm gonna kind of try to really more kind of summarize, I think some of the key points from this section. So first, and I think this is a really, really important point is we don't, what goes wrong goes wrong in so many different ways and in different ways at different times across somebody's kind of lifetime and trajectory of intersections with the system, involvement, non-involvement in different ways. And I think if we really, really want to change things, if we're thinking about these rates of the majority of people across everywhere we look at disengagement, we're really talking about the majority of people with psychosis. We need, I think, a multi-level systems approach. Socio-structurally, I think we have to understand that when we are in a society in which stigma against psychosis and schizophrenia is so pronounced and so visible, often taking the form of, really, really kind of overemphasizing and over highlighting instances of violence that involved psychosis, tying these things together, attempting to restrict gun rights selectively for people with significant psychiatric disabilities. All of that is a setup for really kind of reinforcing stigma and creating a category of person, which nobody, for very good reasons, would want to belong to. Nobody would choose to belong to. Nobody raises their hand and volunteers and says, I want to be a part of that group that we're seeing these news articles about, that we're trying to restrict gun rights of, et cetera. And people are exposed to this, I think, is a really critical point before they ever get diagnosed, right? So the average age of onset being 18 to 20, you have spent close to two decades already immersed in a society in which these negative attitudes are very, very obvious. And then you are being put in that category, not from birth, but suddenly at the age of 18, 19, 20, 21, you're put in that category of person. We also have kind of a backdrop of just all kinds of stuff going on, right? Including distrust of science, distrust of expertise, that sort of thing. The kind of complex financial erosion of community mental health. Program level. So I think kind of thinking about physical space, what is it that people are being brought into and that they're encountering, and how does that shape whether this is gonna be seen as a desirable thing? And I was just, so I'm gonna do some trainings here in Pittsburgh for our very large psychiatric hospital. And so I was just on the psychosis ward a couple of weeks ago and it's really depressing. It's really depressing to visit these places, right? Even just in terms of the physical space. And again, it's the antithesis of everything often that we would think of even from a kind of scientific research perspective as conducive to healing. We know that plants, light, green space, these are things that improve people's moods and wellbeing. And we know that. And then we have dark concrete, sort of detention spaces that people are locked into. And of course, even worse when you're talking about seclusion and restraints and seclusion rooms, right? Cause they're usually just no windows whatsoever kind of thing. So, again, just kind of thinking about how that impacts people, how that impacts what they think about the mental health system as, how that indirectly shapes ideas and beliefs about healing and whether, to what extent these are healing spaces. And kind of processes and communication rules and policy that we can think about at the program level that really can contribute to creating or building different kinds of environments. So another thing I will mention here, right, is how we often hand out pamphlets. And I think I have some examples. So let me skip ahead. Yeah, and this is, I don't mean to single out Navigate, which is one of the NIMH supported early intervention in psychosis models, but these are the official patient handouts. And I'm not saying they're terrible, but I think when one thinks about some of the things I've been signaling, somebody who does not even think of themselves as experiencing psychosis, somebody who doesn't want medications, that these being the type of handouts we give really, really kind of signal a somewhat limited way of viewing and understanding psychosis that instantly could be quite alienating. And I think the case I would make is it doesn't need to be that way. We could have a much greater diversity of outreach materials in our waiting rooms, different posters on the wall, much more use of plain language rather than sort of medicalized language and jargon. And in programs in which folks are being given some kind of patient intake packet, information packet, or there are informational flyers or brochures out in the waiting area. Those are huge opportunities to actually really kind of set a different tone for how the thing in question is being understood. And again, thinking about those 50 plus percent of people who are gonna disengage, who we could insist until we were blue in the face that they are experiencing psychosis and all that insistence is gonna do is drive them further away. So can we change? Can we shift to create environments, right? In which people feel less put in a box by providers. And again, I would say like, if the goal is engagement, we can potentially do this. I wanna highlight this resource because being just very, very concrete, probably one of the tools I use the most when I'm doing like consultation work with providers. This is MHALA, Mark Reagans, really the famous psychiatrist, Mark Reagans. Mark is pretty incredible, but he's really the lead developer on the Recovery Culture Progress Report. And it's not a research evaluation tool, it's a process tool. It's meant to be used by a team, a program, an organization that really wants to kind of look at and discuss what they're doing and how that's manifesting in policy and infrastructure and interactions. And it's kind of broken up into all these different domains, welcomingness of a program and accessibility broken up into all these different ways. And then operationalized from not yet explored, the thing really isn't even happening to excelling. And Mark, when he does trainings on this would always say, right? Like nobody is gonna be excelling on everything. That would be unheard of. It's about using this as a tool to think about where you are and which areas might be a target to improve. And I would say that almost everything Mark has operationalized in this tool really kind of pushes towards the kind of environment and the kind of practices that people would find more engaging that would be conducive to them participating, being involved more and coming back. So again, another like key section that I really like is emotional healing relationships and environments. So we have listening partnerships, rituals, spirituality, expanding therapy, healing focused activities, safety, emotional reciprocity, family inclusion, staff self-disclosure, and genuine emotional availability, right? So just, and I think that if programs really carve out the time in very busy schedules because of managed care and just current kind of structure and mental health systems potentially really, really valuable. So again, I'm just kind of breezing through relationships. And again, all these slides will be accessible. So I'm just gonna like kind of spend one more minute talking so we can get to Q&A. But even under relationships, if we just start with really acknowledging and processing prior harmful things that have happened to people in the system. And while one, you know, ideally would think this doesn't apply to people maybe in an early intervention in psychosis program, even there, the most common pathway into early intervention services has involved, you know, police contact and hospitalization more times than not. So a really trying to understand how somebody has been impacted by what has already happened to them, how that has started to shape the way in which they view the mental health system or the current program that you're maybe working in and trying to engage them within, how it was harmful if it was harmful, right? What that sort of did to them, what it has maybe meant to not be believed. And I think in the context of psychosis, this is not just the system, it's family, it's friends, it's, you know, potentially everybody that you're coming into contact with, who's telling you your experiences are not real, we don't believe you on some level, right? So really, really engaging with that person in a person-centered way about what has happened and just asking, if you had bad experiences before, like, what can I do differently? Now, this is a relatively basic point, but across the collectively pretty voluminous amount of qualitative interviewing I've done, it's a perpetual source of kind of surprise and sadness to me that it is vanishingly rare to hear people say that this has ever happened to them ever. So talking about folks who are in their 40s, 50s, 60s, they can reflect back on literally decades of services and tell you that nobody has ever had a serious conversation with them about these things. So it's one thing that we can fix, it's under every provider's control in a certain sense to just start having those conversations. Validating and expressing interest in subjective experiences, and I'm gonna stop after this, but just, I think probably one of the other most common and pervasive experiences of folks experiencing psychosis, and this absolutely includes me, almost every experience I've had, psychiatrists, nurse practitioners, they just want to know how severe things are so that they can adjust your medication level or add medications. They're not there in general, and the system doesn't allow them to be, to really understand in a deeper way these incredibly complex, rich, polyvalent experiences of transformations of perception and space and time and everything that kind of goes on in psychosis or voices and what they're saying. And then often kind of therapy and counseling and case management in another way have become so solution-focused, fixated just on, well, what's distressing, and let's come up with a plan to address that, that folks in those roles are also not actually engaging with somebody's story, and there's no quicker way to alienate certain people than to not take really, really seriously things that have absolutely massively affected them, their sense of self, their experience of the world, and to sort of express disinterest because you want to move on to the next thing because this is sort of just yet another delusion that you're hearing about. So I think another place where it really is within our reach, but it really requires a big shift, on the other hand, in the way that we kind of first engage and meet with people. And because of time, I feel like I should stop here, but again, you'll see a lot more in the slides, and if anybody is interested and would want me to do a more extended webinar or training for your agency, I'm always very happy to. I'm a salaried academic. I don't need payment for that kind of thing. And I, yeah, again, there's a lot here, and it's very important. Oh, and sorry, I'm supposed to do. to the slides, right, Sarge? Thanks so much. That was really just a wonderful, thought-provoking, inspiring presentation. So I want to take a moment and let you know that FMI Advisor is accessible from your mobile device. Use the FMI Advisor app to access resources, education, and upcoming events, complete mental health rating scales, and even submit questions directly to our team of SMI experts. You can download the app now at fmiadvisor.org forward slash app. So I'm looking at the time. There were a bunch of questions, but I also want to be respectful of people's time and want to note that there is, if you go to the next slide, Neve, the one after that. Oh, sorry. That if there are topics that were covered in this webinar, maybe questions that you had that you'd like to discuss with colleagues, you can post a question or comment on FMI Advisor's webinar round table topics discussion board. That's a way to network and share ideas with other clinicians who participate in this webinar. In addition, if you have questions about this webinar or any other topic related to evidence-based care for SMI, you can get an answer within one business day from one of SMI Advisor's national experts on SMI. The service is available to all mental health clinicians, peer support specialists, administrators, and anyone else in the mental health field who works with individuals who have SMI. It is a completely free and confidential service. The next slide. SMI Advisor offers more evidence-based guidelines specific to client engagement, such as the videos, one is called Express Yourself, assessing self-determination in your life, and This is Your Life, creating a self-directed life plan. These short videos share tools around enhancing client engagement. You can access the resource by clicking on the link in the chat or downloading the slides. The next slide. Can claim credit for participating in today's webinar. You need to meet the requisite attendance threshold for your profession. After the webinar ends, please click next to complete the program evaluation. The system then verifies your attendance for credit claim. This may take up to one hour and can vary based on local, regional, and national web traffic and usage of the Zoom platform. Go ahead and then next. I'm sorry. That's a couple, one more. Please join us on August 10th as Dr. Erica Prowse presents states and properties and administration of long acting injectable antipsychotics. Again, this free webinar will be on August 10th at 3 p.m. Eastern time on Thursday. Thank you again, Dr. Jones for the webinar. Thank you all for joining us. Until next time, take care.

client engagement

psychosis services

disengagement

mental health services

multi-level systems approach

socio-structural factors

program-level factors

subjective experiences

power dynamics

healing relationships