false
Catalog
The Setup: Pathways to Coordinated Specialty Care ...
Presentation and Q&A
Presentation and Q&A
Back to course
[Please upgrade your browser to play this video content]
Video Transcription
Hello and welcome. I am Tashita Mayanel, a child psychiatrist and assistant professor of psychiatry at the University of Pittsburgh in Pennsylvania. I am pleased to moderate today's session, The Setup, Pathways to Coordinated Specialty Care for Racial Ethnic Minorities. Now I'd like to introduce you to the faculty for today's session, Dr. Leopoldo Cabasa, Dr. Oladunyi Oluwayi, Dr. Steven Lopez, Dr. Cabasa at the Browns, Dr. Olie Elson-Floyd at the Washington State Center for Excellence in Early Psychosis. Her research focuses on reducing racial and ethnic inequities in mental health service utilization and family engagement and early intervention programs for psychosis. Today she will throw light on help-seeking experiences and utilization of coordinated specialty care among minority families. Dr. Steven Lopez is a professor of psychology and social work at the University of Southern California. His long-standing research goal is to improve mental health services for United States communities of color, particularly Latinos. This is best illustrated by an NIMH-funded community campaign to reduce the duration of untreated psychosis in a largely Spanish-speaking Latinx community in LA. He will discuss need for evidence-based campaigns to decrease duration of untreated psychosis in an FAP population and Latino community. So today what we're going to talk about is understanding pathways to care for individuals and families who are entering coordinated specialty care for psychosis. It's a work that we did several years ago to really understand the issues, the factors, and the pathways to care for these individuals and families. Next slide, Chris. So as we know, and as we all know in this conference, psychosis is a disabling and costly condition. The duration of untreated psychosis is a critical concern for the mental health care system. It's an area that requires a lot of attention to understand what are the factors that create a duration of untreated psychosis and how to mitigate and reduce that time between the emergence of psychosis and access to care. And we know that longer DUP is associated with an array of negative outcomes, lower functioning, poor quality of care, and increased risk for relapse. Next slide, Chris. So the focus of our project is to really look at and examine pathways to care and DUP. And basically pathways to care are defined as a sequence of contacts that individuals and organizations are prompted when facing a mental disorder, a mental issue. And it's those efforts that the person or their loved one initiate and all the different contacts and processes by what that person do in response of those efforts. It's in many ways a process. It's an ongoing dynamic effort to seek help. And the issue is by studying those pathways to care, we hope to identify factors and processes that can help us understand how people cope with a mental disorder like psychosis and how they seek help for those disorders. And the goal here is by understanding those factors, we will be able to reduce the duration of untreated psychosis and promote early access to this treatment as best as possible. Next slide, please. So the study aims or what we're going to talk about is a qualitative study we did several years ago describing the pathways to care from the client's and the family perspective and bringing them together. And these are people who participated in the Recovery After an Initial Schizophrenia Episode Connection Program, the RACE Connection Program. And the idea here was to understand their stories and their narratives around how they reached that service and identify gaps and bottlenecks along the care that may have contributed to delays in care. So next slide, Chris, please. So for this study, what we did with this, we interview participants or recipients of RACE Connection, there were 20 of them, and then 10 family members that they nominated. We conducted semi-structured qualitative interviews focusing on the pathway, and I'll talk a little bit more about the detail. And also, we review the medical records and the records that they had as part of the program to identify places where they have gone to service at the initiation of first-level psychosis and where they ended up. We use grounded theory and a case methodology in which we brought this information together and then to the strategies that we used to ensure the rigorousness of this analysis was audit trail, triangulation of both the family, the patient's perspective, and the records with debrief as a team, and then we provided member check-in presentations with different stakeholder groups around this particular topic. Next slide, please. So the pathway to care interview basically is to, we knew exactly when people, the onset of psychosis, particularly the month, and we knew also when people enter the RACE Connection treatment. So we wanted to talk about what was happening around the onset of psychosis, where do people seek help, and for each of those events of seeking help, both formal and informal, we asked what prompted that event, exploration of that event, where did they go, who did they see, what type of help was sought, how did the person cope with that process, and what happened after the event. And then after we had a whole picture of the pathways to care, we asked people to reflect upon the lessons learned and recommendations that they may have. Next slide, please. So here's a part of this process. We use this methodology, a timeline tool, since this was retrospective data, people recollecting how they got there. We used this timeline tool developed by Beverly Moss and colleagues from the Schizophrenia Research Institute in Sydney, Australia, which basically, it uses, as you can see, a whiteboard. It uses these magnets, and it helped create a Pathways to Care for each individual, and it was an interactive interview. As we, as the person was telling us about where they went, what they did, they also provided information, they moved the magnets around, they could write with a Sharpie different notes, and this way, we co-created a whole narrative around their Pathways to Care, and we did the same thing with family members, independently of what we learned from the participants. Next slide, please. So the results, at the end, we had 20 people, 20 patients, a little bit less than half were female, about half of the individuals were Hispanics, and as you can see, the racial and ethnic makeup of the people, the mean age at the time of our interview was 23 years old, the mean age of onset in this sample was 20, and the entry into Race Connection at that time was 21. We interviewed around 10 family members that were nominated by the participant, and mostly were female, mostly were mothers who participated in these interviews. Next slide, please. So as we can see, we have different characteristics to identify the Pathways to Care, so as you can see, the duration, the mean duration was around six months, the duration between the onset and the first professional contact was around one month. People used different type of professional contact from primary care physicians, ER, police. After that first professional contact, they had around 5.2 months, and a median of three months between that first professional contact and the entry into Race Connection. As you can see there, there was about 5.28 professional contacts from the onset to entry, and most of those mental health care was around psychiatric hospitalizations and outpatient mental health care. So that just gives you some context around the different pathways and the different professional contacts that people have when they sought help for their psychosis. Next slide, please. So then what we wanted to do was to really understand from the family and client's perspective, what were some of those factors that really influenced their decisions to seek help and their Pathways to Care? And what we found was that there were three major sort of characteristics that came up, misattribution of symptoms, stigma, and self-reliance were really important. So next slide, please. So in terms of the client, the attribution, which was talked about by 75% of our sample, this focus on how participants and their family members made sense or attributed the causes to the symptoms and the experiences that they were experiencing and how that impacted and reacted to those experiences. This was a meaning-making process that shaped the symptom interpretation and the help seeking. And we saw a lot of struggles with it, that people, both the person and their family members struggled to attribute what seemed to be a situation, really trying to understand, you know, are these real issues, are these related to drug use, are these related to teenage issues or developmental concerns? What's really going on here? We also saw that people talked a lot about self-reliance, that not seeking help or trying to rely on themselves because driven by fears of embarrassment or coping, and then issues of stigma around fear, depression, apprehension, disapproval of psychiatric medications. And the idea was to avoid the label being a label with a mental illness. Next slide, please. Animation, yeah. And all of this is happening with what we term a cloud of uncertainty, of really not really figuring out what was going on here. Next slide. And that cloud of uncertainty had three major components, this lack of knowledge around what is a mental illness, what's really going on here, what's the appropriate care that people should get in this situation, and where to actually find that care. There's also ambiguity around what causes these symptoms, how severe is this? Where do we go for care? How do we best connect? And then ambivalence about the level of necessary concern, the need for treatment, and really a lot of question of what is happening, who and when to tell, where to go for care, and what are the options here for care? Next slide, please. And part of this process was then the connection with the healthcare system, which is a critical juncture in the help-seeking component here. And within that connection with the health services factors, we saw four components, interpersonal connection, quality of care, family involvement, and care transition. And each one could shorten the duration of untreated psychosis or create longer duration of untreated psychosis. Next slide, please. And what we saw were different components, and that experience that people have with the healthcare system really shaped how they connected with care. And what we saw was the interpersonal connection with those providers. People talked about very positive connections, those providers that enhanced trust, reassured them about what was going on, provided clear communication about what to do, and provided shared decision-making was very helpful, but we also saw people that had lots of negative experiences, lack of communication, not providing clear information or explanations about what was happening, where to go about the symptoms. We also saw issues of quality of care, where families and patients really appreciated when they got an accurate diagnosis, they received appropriate treatment, shared decision-making. And on the other side, having really negative aspects, not receiving a clear diagnosis, feeling trapped, or oddly treated poorly. We also saw experiences with how to involve families. Families that were very engaged felt that that was a really good component because they were able to advocate for care, they were part of the decision-making process, versus families feeling alienated by providers and not being involved in that process. And then the care coordination that happened. What happened when a person went to the hospital and went to outpatient care? That transition between one setting of care to another was really important. Next slide, please. So as you can see, each of these elements could have a positive and negative aspect to the duration of ontrea psychosis, where you have positive connection, good family partnership, high quality of care. You saw people connect to risk connection in a quicker way and less time transpassed between the onset and the connection to care. When you saw multiple negative connections, low quality of care, lots of family alienation from the provider side, then you saw longer duration of ontrea psychosis. Next slide, please. So what we're finding, or the finding from this study was that before people connect to care or seek help, the issues of how they attributed symptoms, issues of stigma, and the attitudes of self-reliance were critical barriers that created and contributed to this cloud of uncertainty that created or inhibited help-seeking component, really not knowing where to go, what to do, created those elements. And those were present as people are trying to make sense of psychosis and what to do with it. We also saw that the contacts with the health care system created a critical juncture. It could either accelerate the pathways to care, it could accelerate the connection to good care, or could actually delay that care. Those experiencing with the health care system who have profound impacts into what people are receiving and how they connect to care. And so our efforts really need to focus on reducing that uncertainty and improving the experiences that people have every time they contact a professional or they have a contact with the mental health system. Next slide, please. So I just want to put these findings into context. This is a small qualitative study. It's a small convenient sample of about half of the samples Latino. These are people who reach specialty coordinated care services. These are people who actually were able to successfully navigate the service system. So we just need to be very aware that this is recollection of people who were connected to care. In any retrospective study, there's always recollection bias. We try to minimize that with a timeline tool and connecting what people are telling us with what we knew of the medical record. And this is a one-side study. This is the experience of one area, one program in the United States that may not be replicable or generalizable to other places. Next slide, please. And then in terms of our implication, what are we learning from these findings? Well, one of the things that was very clear is that we need multifaceted strategies to really address this issue of duration of untreated psychosis and help people in that pathways to care. And one element is to really provide communication and education programs to family members, to people in the community, to help reduce the stigma, to promote mental literacy, particularly about attribution of symptoms, particularly around identifying where a situation requires help and to provide information about where to seek help and what to expect when you seek help. What is the type of treatment that you should be receiving? And be a better advocate. And that information is really important for family members. And actually, in this session, we're going to hear a great program from Dr. Tiro Lopez around really addressing this type of issue from the community side. But we also need to address issues in the healthcare system side, interventions to improve client and family members' experiences, better evaluations of psychosis, timely referrals, better coordination and transition between inpatient and outpatient care, and then really talking about how to involve families and how to engage with family in the decision-making process and the treatment decision process of this. So those connections and seeking help in the healthcare system and the relationships that are formed create really important opportunities to improve engagement in care and reduce the duration of untreated psychosis as people are engaging in care. And I think that's all that I have for this presentation. Yeah. Thank you so much. And I look forward to the questions. And I think, Duny, you're up. Okay. I'm up. Hi. I think Leo gave a fantastic talk, and I think that this presentation that I'm about to give really builds on and complements Dr. Cabasa's presentation, and even builds on presentations that occurred earlier today, even ones by Dr. Anglin and other presenters during this conference. Next slide, please, Chris. So I think the other talks and Leo's talks really built on what it is that I am going to present on, where we know that racial and ethnic minorities have a higher incidence of first-episode psychosis compared to white individuals. And that's not just here in the U.S., but that's also abroad. We also know that black individuals are more likely to be diagnosed with a schizophrenia spectrum disorder, but they're also more likely to be misdiagnosed with a schizophrenia spectrum disorder. And so this presentation that I'm going to focus on really hones in on this last point where racial and ethnic minority families experience more difficult pathways to early psychosis services. Next slide, please, Chris. So why? So why is it important to... Oops. It's okay. You can stay right here, Chris. So why is it important to understand these pathways to care? As Chris mentioned, racial and ethnic minority families have more negative experiences that are shaped by individual, interpersonal, community, and society-level factors that can help help seek in during the pathways to care, but it can also limit engagement during this pathway and in early intervention programs. So what we know, early family contact, especially among black families, we found that if black families are connecting with a mental health provider prior to the initiation of early intervention programs for early psychosis, that was directly linked to their quality of life outcomes within coordinated specialty care programs. We know that negative experiences, which I think Dr. Cabasa really honed in on, negative experiences among racial and ethnic minorities can lead to a lack of engagement, and that family engagement in that first initial appointment really predicts continued engagement throughout care. Through this process and through previous literature and information that I'm going to present and information that Leah has just presented, this really identifies multiple focus points that impact engagement in coordinated specialty care programs, especially among family members. It highlights the importance of pathways to care. It highlights the importance of how that is then linked to initial engagement and how initial engagement is linked to sustained engagement within treatment. Next slide, please, Chris. So here's the big one. Here's additional information where we're able to provide additional context to why focusing on pathways to care is important with CSC services. I really am focusing on engagement and really honing in on why engagement in coordinated specialty care programs are important. Using data from the RAISE study, Leo and I worked on this paper where we took a look at family engagement and we took a look at racial and ethnic differences. What we were able to find is that in agencies, in the control, in that community care, that figure on the left-hand side, less than 10% of families were engaged in treatment for their loved one who was experiencing psychosis. And in the NAVIGATE, even though it was doing a little bit better than what we see in coordinated care, we see that less than 40% of family members are engaged within this NAVIGATE treatment study over the course of a two-year period. We also found that black families were less likely to be engaged or participate in family services compared to whites. And so this really speaks to the point of we need to do a better job at focusing on family engagement as it's linked to so many different outcomes in care. And it's also linked to the experiences that family members have prior to care. Next slide, please, Chris. So as I'm sure most of you know, family members play a critical role in help seeking and treatment outcomes. And by understanding their experiences, we can find ways to improve and where we need to make improvements in order to improve that pathways to care and essentially increase engagement within our services. Next slide, please, Chris. So we currently have an ongoing survey to understand family members' experiences, barriers to care, motivations, where we are actively still recruiting racial and ethnic minority families to participate. And so this is my shameless plug. And I'm pretty sure a lot of you have seen this announcement on PEPFED. If you know somebody that fits this bill, we are still recruiting individuals to complete this survey, which would greatly enrich the data that we are collecting to provide a bigger picture of possible barriers and experiences among racial and ethnic minorities. And so to date, we have had 31 racial and ethnic minorities participate in this survey, where the majority of respondents have been mothers, which is closely followed by siblings. And I think sometimes this is also important to remember that sometimes we talk about family members, but that really encompasses support persons. And so, sometimes that may not be a family member. And so, although the majority of people that have completed this survey have been parents, right after that is we've had a lot of siblings complete this survey as well. Next slide, please, Chris. And so, part of the survey was having family members and support persons really identify their first, second, and third contact. And so, part of the survey took a look at contacts for family members and how they identify changes or when they identify changes in their loved one. And so, this is an example of one particular pathway where the most frequently reported first contact was a family member. And this was followed by mental health providers were about looking at the survey and how people responded were like the third or fourth first contact that family members made. And so, as you can tell by this, individuals are reaching out to a lot of these informal sources. And Dr. Kabassa spoke about these informal, informal sources of services and support. And so, we see individuals reaching out to after they have talked to a family member to a spiritual leader, a school counselor, some people going back to another relative or a family friend. And then, as we get to the third contact, we see the introduction of going to the emergency department providers and even trying to get in touch with local support groups. Next slide, please, Chris. And so, really focusing in on some of these formal sources, we see this mixture of formal and informal sources where people go to for support. And I think a lot of the times we focus on where do people go to for services. But I think it's equally important to where do people go to for support, support of that family member, that family member needs to kind of grapple with the experiences of not knowing what's going on with their loved one, experiencing this for the first time, not even being familiar with the mental health system. I think all of these key things play a factor into where individuals go to for support. One of the main ones that really stood out to me for the second point of contact were spiritual leaders as the second form of contacts. And we see this time and time again, not just in mental health services, but even when individuals are, if there's a substance use problem, we see now a lot of studies really honing in on utilizing Black churches in order to disseminate information and to educate their congregation in terms of identifying signs and symptoms and even making referrals to the appropriate services. And so I think this really speaks to and highlights the importance of informal sources and in terms of the outreach, which I'll speak to a little bit later in this presentation. Next slide, please, Chris. So I think family members were also asked to talk about what information they've received and what type of education it is that they received. And through these formal sources, family members received various information and materials, but yet 50% of family members received none of these materials at all. And I think that's important to note, because if we're trying to push for individuals to go to these formal sources, what resources are they being given? And it's essential to see, are they being given resources in terms of what are the available services that are provided within their community? And I think sometimes we live in this luxury world where we think that coordinated specialty care programs are available and easily accessible for all individuals. So even if there is not a coordinated specialty care program available within that community, what is the next best appropriate resources within that area? Next slide, please, Chris. And so family members really described how we can improve coordinated specialty care services, where I put in an insert here that was from a black mother in Oregon who said that it would be really helpful if local emergency departments, police, ambulance, and emergency medical providers were familiar with early intervention programs and could give referrals and information to individuals and families who may be eligible for services. And this really speaks to the types of levels of support that family members were describing that could improve their pathways, which include having supportive interactions with multiple formal and informal sources, and working with, well, coordinated specialty care programs, really working with colleges and employers so that these colleges and employers and other educational institutions really are familiar with the available resources within the community. And so when we go into knowledge, we're looking at educating community organizations, letting them know that these services are available within their community. Having other individuals, such as a lot of these informal sources, such as pastors and school counselors, understand what the signs and symptoms are so they can make appropriate and timely referrals. And then it even speaks to, as I've been mentioning, the available resources and services within that community. I think one of the biggest barriers that people experience is that they just do not know that there are early intervention services that are available within their community. And so making that timely referral so we don't see this bouncing around of people going from one agency to another until they get to the appropriate services. Next slide, please, Chris. Family members who completed the survey also spoke to what was helpful and what can improve coordinated specialty care programs, but they also shined a light on the things that they did like. Some of the things that they really did like was online support and filling that need for social support and social connectedness, family group meetings, having their opinions valued by clinicians. That was a barrier, but it was also a facilitator where family members have really spoken to the great work that coordinated specialty care programs and providers in those programs have done in order to value their opinions in terms of their loved one's care. Being well informed, knowledge was a big one. Understanding their loved one's diagnosis, and these are the experiences that family members really wanted. And understanding additional resources and services within the communities that they could tap into. And then skills, things that can be used at home and taken home with them. How to manage their loved one's symptoms at home, how to effectively communicate with their loved ones at home, and how to effectively communicate with other people within the community, which also serves as another educational way to bring awareness and to reduce stigma associated with psychosis. One of the individual's comments in terms of we tend to always think about what's going on in coordinated specialty care and while they're in early intervention services. But this quote really speaks to what happens outside of services where a black father was really concerned about the community context and things happening in that area. That really spoke to things that we sometimes need to consider, or we should always consider, in terms of having access to employment. Because for our programs here in Washington State, a lot of family members or a lot of youth have a goal of going back to work and going and getting an education. And so if a big barrier to that is discrimination that is occurring within the community, how do we address that? How do we have realistic expectations about getting a job and going back to school if a family member is experiencing discrimination? And how do we train providers to work and effectively communicate with family members that may be experiencing discrimination within their community, which goes beyond our bubble of mental health services? Next slide please, Chris. So what does that mean for coordinated specialty care programs and how can we use this information to better what we do? Next slide please, Chris. I really do think that a lot of this boils into community outreach and the importance of community outreach. And I know for a lot of coordinated specialty care programs, outreach is embedded within the work it is that we do. And so sometimes that means extending beyond internal referrals or referrals from other mental health providers and going beyond that and educating organizations about the services you provide within that community, educating school personnel, educating personnel within foster care system, educating people within the criminal justice system about how to identify signs and symptoms and how to make an appropriate referral to your program. And I think this breeds into community integration and really involving the community into how it is that you tailor your outreach messages. Here in Washington State, we have really tried to jump in on how we kind of tailor those messages where we're now creating videos that can be displayed and shown to other people. We've created educational material, such as stickers and magnets that go directly to our website and where people can make a referral and people can see where the immediately close locations are and even find where providers that are trained in CBT for psychosis, even though it's not in a specific coordinated specialty care program, where they can find providers that are trained to deliver CBT for psychosis. One of my big proponents is the use of the cultural assessment tools such as the DSM-5 cultural formulation interview to really have a firm understanding about family members' experiences prior to starting the process of receiving services. And I think last year at this conference, there was a whole presentation that I think is still available on the website that you can take a look at that really jumps into how OnTrackNY uses the cultural formulation interview and how you can start to integrate that within your coordinated specialty care programs. And I want to leave off with the importance of stressing to family members that their involvement has a direct impact on their loved one's treatment outcomes and being flexible with how we think about engagement of family members, especially when there is one of the biggest barriers is a client refusing or an individual refusing for their loved one to be engaged within their services. And so I'm going to leave it there, and I'm going to pass the buck to Dr. Lopez, who has a fantastic presentation. Okay, good afternoon. It's a real pleasure to share the panel with Dr. Cavazos, Leo Cavazos. I've been an admirer of his work for some years, and I've really appreciated getting to know Dr. Dani Olowoye and her important work. And I think we really are a great team here. Dr. Cavazos looking at some of the barriers and Dr. Olowoye pointing out ways that we can improve access to specialty care, particularly coordinated specialty care. Next slide. I feel like I'm on jeopardy. Okay. So there's no question that coordinated specialty care is what we need. And I'm thrilled that the United States is investing in this, and this is occurring across the globe. But it's really important to keep in mind that we've got to do more, as pointed out by Dr. Olowoye's work and Dr. Cavazos' work. We really need to do more in reaching out to the community. And this is really clearly identified in the first study that was able to demonstrate that they can reduce the treatment delay or the duration of untreated psychosis in people in first episode psychosis. And that's a study in Norway where they were compared to some control conditions. Those that had the campaign, those that had a systematic community outreach were the ones that reduced the treatment delay. The other two sites had a specialty care, had the services, but didn't have a campaign. So it's really important to think about campaigns and community outreach. And what I'm going to talk to you today is about a campaign specifically focused on a Latino Latinx community in Southern California. Next, Chris. So why Latinos? One, they're the largest community of color in the United States, nearly 60 million folks. But more importantly, they tend not to use mental health services. We don't have data in these national epidemiology studies with regard to schizophrenia or psychotic disorders more generally. But with regard to anxiety, depression, substance use, that immigrants, Spanish speaking, particularly people of Mexican origin, are less likely to make use of services compared to other groups. Next. All right. So if campaigns are the focus, what can we learn from the literature? Well, not a whole lot. There are a couple of important limitations. One is that there's little attention to the sociocultural context within the messages. And some of the previous presentations suggest ways that we can embed the sociocultural context. But in any case, there's little attention. One study out of Singapore translated their campaign in different languages. But there is little discussion about the context or the content of the message. So little attention to sociocultural context and content. Another thing is that there's an assumption that if you carry out the campaign, that's going to increase psychosis literacy and mental health literacy and help people identify the symptoms and identify the illnesses and conditions and get people in the services. But if you look at the literature, there's little evidence that people are testing whether or not their campaigns or their messaging or their outreach service really does enhance psychosis literacy and mental health literacy more generally. So we need to evaluate our messages. Clearly, there's been a lot of research in evaluating the services. But if we need to reach out to folks who aren't getting into services, and we need to carry out campaigns, we need to do equal due diligence in evaluating our messages as well. So there needs to be evidence-based messaging. Next, please. All right, we also consider conceptual models. How do we understand psychosis literacy? And we drew on the Institute of Medicine's 2004 report, which deals with a number of illness conditions. And we drew from that as well as Linda Garon, an anthropologist, and May Yeh, a psychologist, some of their important work in looking at help-seeking. And this is very consistent with some of the points made earlier, particularly by Dr. Kobasis, that the idea is if you understand what the symptoms and the conditions are about a given illness condition, what the symptoms and the signs are, you're more likely to then make the attribution to the illness or to the disorder, as opposed to the social world and all the chaos and complexity that's going on in people's lives. And then if you make that illness attribution, you're more likely to seek services. And so this model informed our campaign. Next. The other thing we wanted to do is to use simple language. You know, we've seen campaigns where they use the term schizophrenia, they use the term psychosis, and they use the clinical or technical terms. We don't think that's the way to go. Some of our consumers can't even pronounce schizophrenia sometimes. So we thought it'd be useful to use really clear and simple language. And what we came up with was an acronym and a mnemonic device. I actually asked my wife, Leticia, I said, I'd like to come up with this mnemonic device. She's from Pueblos and teaches Spanish. Something like C-COSAS is psychosis. And she said, No, I don't think that works. I said, Why not? Because if you want it for Spanish speaking folks, you need it in Spanish. So she took her LaRouge thesaurus and her Velasquez dictionary, and I told her what the symptoms were. And she came up with clave. And I said, What does clave mean? She says clave means a guide, a clue, an index. And so use the clave, use the guide, para detectar enfermedades mentales severas. So use the clue. And what is clave? Creencias falsas, false beliefs, delusions, lenguaje desorganizado, disorganized speech, possible thought disorder, alucinaciones. ¿Y qué clase de alucinaciones? What type? Ver cosas que no existen o escuchar sonidos o ruidos. Usen la clave to identify serious mental illness. Next slide, please. So that informed our brochures. And that, next slide, that informed all of our materials. The other thing that we wanted to do is to come up with a toolkit. We wanted folks in the community, lay community workers, to be able to communicate these messages, not necessarily rely on professionals. We started off with La Clave Ambival, and that was me giving these talks. But the talks were comprised of, we wanted to make them engaging, not a professor of psychology giving some abstract kind of notion of what schizophrenia is, but instead something that related to the community. So we drew on popular cultural icons. For delusions, we drew on a song by Maná, Que Muere San Blas, which is about this woman who's waiting for her loved one. Miles de lunas pasaron, many moons passed, and she's still waiting at the pier for her loved one in her same clothes. Until at the end, they come from a psychiatric hospital to take her away. Delusions. Lenguaje Desorganizado is a clip from Cantinflas, a Mexican comedian who would go from one idea to the next in a comical kind of way, but it illustrates that kind of way of speaking. And then we also drew from Sofía, a Puerto Rican group. Sofía se le ve tirando besos al aire como si hablara con alguien, a su lado no hay nadie. Throwing kisses in the air, talking to somebody, and nobody's at her side. So we use these music and videos, brief clips, to communicate what is psychosis. We put that on a video DVD. That's La Clase, The Classroom. And then we worked in Mexico, in Puebla, in particular with Grupo Promotores, and we took our video and our DVD and our our computer and our LCD projector and went into the home of one of the promotores, and we asked Señora, ¿Dónde está la enchufe? Where is the outlet? She didn't have an outlet in her room. It was in a back room, and so we had a long extinction cord. And so it occurred to us that we should also have these materials that don't require any electricity. So we have La Clave Sin Luz. It's figures and illustrations in very little words. You can see in the screen that this is an example of this disorganized speech. She's going from one topic to the next. And then the resource that we use the most is this La Pelicula, which is a narrative film of a family struggling to figure out what's going on with their young adult daughter, and then with the help of a neighbor realize it has something to do with serious mental illness. Next slide. By the way, you can watch the class, if you go back, please, Chris, you can watch The Classroom and also the movie on our website, uselaclave.com or uselaclave.com. Next slide, please. Okay, so we have our resources, conceptual model, and we have our common language. We decided to work in this high-density Latino community of six zip codes. One of the reasons we chose this was the density of Latinos, but the other reason is a close colleague and collaborator, Dr. Alex Capello, a psychiatrist, is the chief of psychiatry at the inpatient unit close by in the county hospital. And then also he's a medical director at the outpatient clinic. So this is where we recruited and screened people coming in with their first episode so that we could measure the duration of untreated psychosis, and we could assess whether or not the campaign had an impact in reducing that. Next slide, please. Let me tell you a little bit about our outreach. Just as Dr. Olavoye pointed out, we need multiple points. Clearly, families are important, so we looked at the general public. We think the general public is important, so we'd go to churches. We would—Swap Meets was really a big place for us where we handed out brochures and made a lot of connections. We went to beauty salons. We went to schools, went to churches. We would go to the Saturday catechism courses. And then we reached out to professionals. We had workshops with healthcare providers as well as mental healthcare providers. And criminal justice was important. One day we spent, we went to seven roll calls starting at seven o'clock or six during the morning, seven roll calls and handed out our brochures to law enforcement. And then of course we went to other professionals and networked. Next slide, please. Here's, we also went to, had billboards and we had bus benches that displayed our 1-800 number. Next slide. We're in the newspaper, Spanish language news, Spanish language TV, radio, and of course our website, newslacklava.com. Next slide, please. Now, we believe that we did a good job in delivering the message. Obviously you can always do better. We estimated that we contacted over 13,000 individuals in one year, contacted over 500 organizations. And got very positive feedback and evaluations of our message. Next slide. We also were able to have some sense that the message was received. So for example, with the 1-800 number, the community called in and they were contacting the outpatient mental health clinic directly. But with the 1-800 number, they didn't know that we were also monitoring the phone calls so that we could count how many people using the 1-800 number were calling the clinics. And so that one peak, for example, in week 23, 22, 23, and 24, occurred when we were on television. They had a 30 minute news report and we were about mental health issues and we were prominent in that and got a lot of folks. And we see that there's a leap or increase during the bus bench and junior poster and in different cases. So we believe that at least to some extent the message was received. Next slide, please. One of the things that we learned, I used to think that all you needed to do was to bring in everybody from the community and teach them what GLADI, and teach them what psychosis is, and teach them the importance of getting into treatment. And, but that's not the case. What we're really doing is we're bringing that's not the case. What we're really doing is we're starting, initiating a conversation. As stigma was mentioned by Dr. Cavazos, it's important to have this conversation and initiate it. To give you an example of this, Rosalba, one of our community educators, outreach person was handing out a brochure and the swap meet. And this one father of an adult son said, my son has these GLADI indicators. And so Rosalba said, call the 1-800 number. A week later, so he texts her and say, he's acting out in this way. Call the 1-800 number, Rosalba said. He must have contacted Rosalba two, three or four times. Finally, we learned that he contacted the police. The police show up and he says, take my son, he's been abusing drugs. Take him to drug rehab place. And the police said, no, you're taking me to jail or the psychiatric hospital. No, he's been abusing drugs. Take him to a drug rehab. And the police said, no, either psychiatric hospital where there's a program called La Clave. La Clave? I've heard of La Clave. And so with that, that conversation, it wasn't that he had the information to begin with. He knew he had to call, but it took a while. Think of your own families, your own self. And sometimes we have the information, we don't act on it. But if you have multiple people participate in this conversation, you're greater likely to get people the care that they need. Next slide, please. So this is a little bit about the design. We had a 16 month baseline where we assess the duration of untreated psychosis. And we had a two year campaign. Then we had a 16 month post campaign. And we anticipated a reduction in the treatment delay or duration of untreated psychosis as reflected in the campaign period and post campaign. But we also expected that the foreign born Latinx members would have a longer delay. Okay, these are the findings and a couple of key points. First of all, the duration of untreated psychosis to the initiation of antipsychotic medication did not change as a function of the time periods or the campaign. But we did get some evidence for the duration of untreated psychosis to any care, whether it's a physician, whether it's a school counselor, whether it's mental health service or whether they're starting antipsychotic medication. So any care. And we see that during the campaign period, it's a little bit less than it is during the baseline, but it goes up in the post campaign. So there's no significant difference between any of those two campaign, any of those two time periods, which make us less sure about the findings, but we interpret these findings as saying, we move the needle. Need to do a better job. And there are ways that we can do that, but we're moving the needle. Not getting exactly what we wanted, but we're moving the needle. Next slide, please. The other thing we found is that, as we expected that the foreign born had the greatest duration of untreated psychosis, both for seeking any kind of treatment, as well as even more so for initiating antipsychotic medication. So clearly the immigrants, part of the community are experiencing the greatest delay. Next slide, please. So the summary of the main findings is that the message was delivered and received. The campaign may have contributed to a reduction in time to any treatment seeking, but not in the time to first antipsychotic medication. And then the other key point is that immigrants have a significantly longer duration of untreated psychosis or treatment delay than the U.S. born Latinos. So in terms of future, next slide, please, Chris. So in terms of future directions, one of the mistakes we made, and I'd encourage those who are considering carrying out a campaign, is get to know your community before you start the campaign. We hired our Rosario de Nebo, wonderful community outreach folks. I wish they could continue to work with us. We have hired them two months before the campaign began, and they spent the first six months getting to know the community. They're familiar with the community, but really getting to know and making the connections. You need to do that a year ahead of time so that when you start the campaign, you're ready to go. The other thing is we had a two-year campaign. I think three years is better than Norway. The TIPS program had four years for their campaign. So I'd be a better bet to have it for three years. And the last point is that our mental health services were a traditional outpatient mental health services. It wasn't a coordinated specialty care. And I think with coordinated specialty care, connected with a campaign would be the ideal. We were somewhat distanced from the actual service. And to conclude, finally, the last, is we develop interventions for early psychosis. Coordinated specialty care is really important, but let's not overlook the special needs for communities of color. And coordinated specialty care may not be enough. And we believe that the coordinated specialty care in conjunction with evidence-based campaigns and community messaging will help reduce the treatment delay and address the barriers that Dr. Cabasa and Dr. Oluoye's research has pointed out to us. Thank you very much. Thank you, everyone. That was a wonderful presentation. We probably have around 14 minutes for Q&A. Let's start with Dr. Cabasa, question for you. How did involvement in the criminal justice system at the time around seeking out treatment affect stigma and other factors? That is a great question. We didn't have, and I make, but we did not have too many people who were involved in the criminal justice system in terms of being in jail or prisons. But there was involvement of police in certain instances. This happened in New York City. There was police involvement in certain instances, as I mentioned, and many of those people were transferred to psychiatric hospitals. But that's a hugely important element. And this is something that we were learning that the referrals that coordinated specialty care were getting were from hospital units and outpatient services, not from jails or prison. And I think there's a huge need to do some of these campaigns and referrals and outreach particularly with the criminal justice system. So there's better connections between that and specialty coordinated care. So we didn't see that in our sample, but I think there's a need for that as important as another area for further outreach to help identify psychosis and refer people to the appropriate care rather than to jail or prison in that sense. As you said, it's a hard, hard question to answer. I don't know if Dr. Lopez, you wanted to add to that, especially that your program campaigned in the community and what your experience was with the legal system. Dr. Oluye, maybe we can have you take the next question. One of the people in the audience had questions about if you had any recommendations on how to increase family member engagement, particularly in low resource regions and situations. Yeah, no, I think that's a super important question. And I'm gonna take it a peg back in thinking about how you think about engagement. Whether you think about engagement in the traditional sense of engagement as in attendance, we've had to broaden our idea of what engagement is. And there's a lot of literature out there that you can look at engagement in various different ways. Engagement can also be are you getting contact with family members over the phone? So in Washington State, we were able to really look at racial black families specifically were more engaged and had more contact with providers over the phone than in person. And so it's not that they didn't want to be engaged. I'm guessing it was the biggest barrier of attending in person, which we know is a big logistical barrier and obstacle to engagement is, do these times match up with family members? And so just thinking outside of the box in terms of what engagement looks like, because I think it was Jacqueline that asked that question, you can be very well engaged with that family member, but over the phone. And so thinking about innovative ways that you can now push out some of your family's psychoeducation over the phone, where it's a little bit more convenient to that family member for them to be engaged. And so I think that's what we've had to do in terms of thinking about engagement and that it's not just the traditional in-person engagement anymore. A lot of our providers here in Washington State do a lot of outreach where they're meeting with individuals and family members within the community, as opposed to actually coming into the agency to provide services. And I think that there's plenty of literature out there that also focuses on the utilization of spaces and where people feel comfortable with. And so they meet a lot of individuals within the community. So I think it's just thinking about in terms of what you're able to do within the context of your setting and how you think about engagement and maybe even just asking the family, what do they prefer? Do you prefer to be engaged with and communicated with over the phone? And maybe try setting up those things where it's delivered over the phone instead of actually that in-person engagement, which has a lot of barriers to it. Transportation is a barrier, timing is a barrier, scheduling is a barrier. And so if they're more receptive to speaking over the phone, like they are here in Washington, then maybe that's just a way that you can do that where you are. I'd like to add, I'd like to build on the prior points. For our study and the duration of untreated psychosis, we had a drop-in, a monthly drop-in visit. So let's say the first week of the month on a Wednesday, any family who we were recruiting for our study had any questions or any concerns, they could come. They didn't have to become clients. They didn't have to register and they would come. And then we'd have multiple families. We built a little bit. We've done some work with Bill McFarland's work on multi-family groups. And the whole issue is trust. The whole issue is trust. And so if you can meet mental health professionals, Dr. Pellis was there, I was there, some of our staff were there, and we just talked with these folks. And then they got to see other families, some folks who had recovered quite well and were functioning well. It just made all the difference in the world and getting them engaged, not just in a research study, but also in treatment. And so I think the issue of trust is really important. So if you can reach out in many ways to establish that trust, it'd be really helpful. And I want to second that. We had, in our study, one of the case that really comes to mind was a mom talking about that lack of trust, that where they went to a psychiatrist, the psychiatrist like shut her down, and said, I don't want to talk to you. We're not, I'm not gonna, you know, I'm gonna just meet with your son and talk about what's going on, but I don't want any report from you at this point. And after that visit, the mom took his son and said, you know what, we're never coming back to this place. We need to look for some way where we can trust. And the mom felt, in her interview, talking about how offended and disrespected she felt, knowing like, I have all this information that I can provide to a psychiatrist to really help him understand what's going on. And they shut her down and not provide that information. And she felt really disrespected in that sense and said, you know, that's not, that's not the way it needs to go. We'll go somewhere else. And there was a family who was really trying to engage. They were really actively trying to get help. And that experience with a particular psychiatrist really impacted sort of, okay, we're not doing that. We'll go somewhere else. And thank God they have the resources. And the knowledge to go somewhere else and get the help that they needed. But that trust, as Dr. Lopez is indicating, and Dr. Olugoye is indicating, is really important in every single contact along the way. Absolutely. And it looks like someone commented about how the pandemic has actually increased access via phone and telemedicine, which is kind of paradoxical and good in some ways for our practice. Go ahead, Dr. Olugoye. Oh, I was gonna say, I think that really hones into valuing family members' experiences and really listening to what it is that they're saying just because they've had a much longer time and experience with the loved one and the individual of care. But one of the biggest barriers that we're seeing is that they don't feel valued or respected by providers. And I think that that is extremely important. The other in is that just asking a family member who's their support person is. Who is that support person's support person? And seeing whether or not that person wants to come along. Because for the most part, it could be, I want my spiritual leader to come along with me. And so making sure that person feels supported and feels comfortable as well, because they're also transitioning and they're also having their own experiences. I think somebody in the chat was talking about the complexity of family members going through their own experiences with mental health or substance use or whatever it may be, that they also are experiencing new things as well. And so addressing those concerns. And sometimes it's a little bit bigger than coordinated specialty care programs, which I think Dr. Lopez was kind of touching on that coordinated specialty care services, I know the be all end all. And so sometimes it expands beyond that where we need to think about what services and if there are services needed for family members, because they essentially aren't clients of coordinated specialty care programs, but maybe they need to receive their own services and you can work together between both agencies or wherever the family member ends up to kind of integrate some of that treatment. Absolutely, we probably have four more minutes before we have to wrap up. Dr. Lopez, Donna had a question about if any models provide financial assistance or help with accessing financial assistance for families in need. Clearly financial assistance is really important. But what's interesting is that sometimes the community's perception and what the reality is don't go along. So for example, with the outpatient clinic, this is a Department of Mental Health, LA County Public Health. If you're indigent and meet criteria, you can get services at no cost, at no cost. And so we would go give presentations and they would say, you know, but you need insurance. No, you don't need insurance. You can go there and even pay for your medication. Now, my understanding is not all clinics are like that. Indeed, that's the case. But so it's about establishing a conversation, a dialogue and having somebody to be able to bounce ideas and help people get over that misinformation. But yes, indeed, one of the difficulties were people who had Kaiser, for example, they couldn't receive the public mental health services where we were working with because they had insurance and they would be able to do so. And they didn't feel comfortable with the kinds of services that they got at other institutions. So finances are a critical barrier, but, you know, that deals with the structural aspects and how we need to combat things at the policy level and the structural aspects. Absolutely. We probably have three more minutes before we wrap up. Dr. Cabasa, another question for you from Alfredo. When it comes to youth in the justice system, how can officials be more aware of psychosis or mental illness? So those who are suffering, but that are sent to the appropriate place rather than being written off as a criminal or deviant? That's a great question. And I think that the same as Dr. Lopez in many ways is to this idea of outreach and campaigns that we go for the general public can also be targeted to specific gatekeepers or professional groups that are gonna be in contact with individuals and families and really address and figuring out what's the right message. I love that, Steven, your idea and the need for evidence-based messaging and campaigns that can cut across all the different audiences and groups that we need to outreach. So for the criminal justice system, something specifically for that group of individuals and think about it where they need that information the most. At what point in their contact with clients and their contact with individuals does that information create the biggest impact? It's something that we need to address. For the previous question, actually it's something that we've been discussing a lot in our group. We rarely talk about the social conditions, economics, transportation, the structures that really impact help-seeking and we need to pay more attention to those and really assess it from family members and clients. What are the social condition that we need to be pay attention so we can connect to care? So it causes an issue, making sure that we're addressing the cost concern either through medications, either through insurance, either through free services and really pay attention to those issues because those are at the end, really important aspects that can influence someone seeking help or getting the help that they need when they need it.
Video Summary
The presenters discussed the importance of understanding pathways to care for individuals and families seeking coordinated specialty care for psychosis, particularly among racial and ethnic minority communities. Dr. Cabassa highlighted the factors that create a duration of untreated psychosis and how to mitigate them. He emphasized the importance of studying pathways to care to identify factors and processes that can improve access to early intervention programs. Dr. Olueyi discussed the need for evidence-based campaigns that address the sociocultural context and content of messaging in order to improve mental health literacy and help-seeking behaviors among racial and ethnic minority communities. Dr. Lopez presented a case study of a community campaign targeting a Latino community in Southern California to increase psychosis literacy and reduce treatment delay. The campaign utilized a clear and simple language, outreach to community organizations, and the development of various resources including videos, brochures, and a film. While the campaign showed some reduction in treatment delay, more efforts are needed to further engage family members and address barriers to care, including those related to trust, cultural beliefs, and the criminal justice system. Future directions include building trust through community outreach, carrying out longer and more comprehensive campaigns, and integrating coordinated specialty care with community-based efforts.
Keywords
pathways to care
coordinated specialty care
psychosis
racial and ethnic minority communities
early intervention programs
mental health literacy
help-seeking behaviors
Latino community
treatment delay
community outreach
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
×
Please select your language
1
English