Office for Disparities Research and Workforce Diversity Webinar Series: Engaging Community Stakeholders to Reduce Mental Health Inequities in the Hispanic Community
LAUREN HILL: I will get going here this afternoon. Good day to all and it is morning for some of us and afternoon for others. Welcome to the fifth of six webinars in the 2023 National Institute of Mental Health Office for Disparities Research and Workforce Diversity Webinar Series. We hope that everybody is enjoying a happy and healthy Hispanic Heritage Month.
Today’s webinar will address the topic of engaging community stakeholders to reduce mental health inequities in the Hispanic community. I am Dr. Lauren Hill, deputy director of the NIMH Office for Disparities Research and Workforce Diversity. And on behalf of our institute, NIMH, and our office, ODWD, we are very pleased and honored to welcome Dr. Leo Cabassa today, who will talk about some of his work addressing health and health care inequities with Latinx people with serious mental illness.
Dr. Leopoldo Cabassa, MSW, PhD, is a Puerto Rican social worker, professor and director of the Social Work PhD Program and co-director of the Center for Mental Health Services Research at the George Warren Brown School of Social Work at Washington University in St. Louis.
His research centers on examining physical and mental health inequities in historically marginalized racial and ethnic populations with serious mental illness or SMI, which includes schizophrenia, major depression, and bipolar disorder. Dr. Cabassa’s work blends quantitative and qualitative methods, health disparities research, community engagement, intervention research, and implementation science. His research has been supported by the National Institute of Mental Health, the New York State Office of Mental Health, the National Institute on Minority Health and Health Disparities, Substance Abuse and Mental Health Services Association, and the Robert Wood Johnson Foundation. Dr. Cabassa is a fellow of the Society for Social Work and Research and the American Academy of Social Work and Social Welfare. He is currently a member of the NIH Center for Scientific Review Advisory Council.
And his scholarship is making significant contributions in three primary areas: improving depression literacy and reducing stigma towards mental illness in Latin America community in the US, reducing physical health disparities in racial/ethnic minorities with SMI, and improving the health and well-being of young adults experiencing first episode psychosis.
Today, Dr. Cabassa will share some of his work in a presentation titled, Addressing Health and Health Care Inequities in Latinx with Serious Mental Illness: Critical Areas for Action. I think our webinar attendees are in for a real treat today. Without further ado, I will turn it over to Dr. Cabassa. You can take it from here.
LEOPOLDO CABASSA: Thank you, Dr. Hill. Thank you for that kind introduction. Let me share my slides and we can get started. Thank you, everyone. It is an honor to be here today and celebrating Hispanic Heritage Month. It is an honor to present our work in this important topic and the opportunity to showcase our work.
Before I begin, I do want to make some acknowledgements and some disclosures. A lot of the work that I am going to be talking about today has been funded as Dr. Hill indicated by multiple institutes. I am presenting here the work of multiple individuals. Part of what I enjoy and have the privilege of doing is that part of this research is really a team effort, and I am very lucky and very privileged to be working with great collaborators across the US, great students, community partners and our research assistants, and our great NIMH T32 predoctoral and postdoctoral fellows. I am here presenting on behalf of their work and I am really excited to talk to you about what we have been doing and the work that we have been doing.
I also want to acknowledge and something that we do not do often is acknowledge our great program officers whose work that I am going to be presenting today has been supported and shepherded by very important individuals within the National Institute of Health, particularly in NIMH, Susan Azrin, David Chambers, Lauren Hill, and Belinda Sims. These are people who are really invested in addressing health inequities and have done great work in supporting this type of research. They have been very instrumental in my own career to navigate the waters within the National Institute of Health and the support of this work. I really appreciate and muchas gracias for that support and continuing that partnership that we have as we continue to move this work forward.
What I am going to talk about today is actually a recent publication that we did as part of a book project that we had and it is really focusing on two key questions that have shaped our work over the past decade. Why do people with serious mental illness are dying at a much earlier age than the rest of the population particularly those from minoritized and historically underserved communities, the Latino community particularly? And also, what is being done to address these deadly inequities? What are the factors driving it and what is being done to address these inequities?
My motivation for this work and writing this book was not only academic or scientific in nature but also deeply personal as well. Living with mental illness and chronic diseases are a familiar experience in my Puerto Rican family. Chronic diseases and psychiatric disorders have taken so much from both sides of my family. From my mother’s side, we have experienced the ravages of cancer, diabetes, Parkinson’s disease, dementia, depression, and suicide. For my father’s side, it is the same way. This is part of the larger communities and families that are dealing with this in our country.
Part of what I am going to talk about today is how this personal experience has shaped and is shaping what I do, who, and how I study. As a Puerto Rican social worker, I really rely on the family’s experience to ground my work and to not to forget where I come from and to make sure that this work has a meaning for the communities that are engaging in our research.
Today, what you are going to hear is for each of the areas that I will discuss today, you will hear stories of people whose experience embodies the challenges of living with these inequities and how these stories have informed our work and science. Stories are really important and are critically to ground our science in the realities of people we serve and study and to communicate what we do and how we go about doing our science to a larger audience.
In the words of Dr. Louis Sylus(ph.), one of my senior colleagues and great mentors, data cannot be allowed to eclipse the human. Data and stories are both valuable as they reflect different shapes of a phenomenon, the objective and the subjective. By combining both, we can gain a bit of understanding of the health inequities experienced by our populations and what can be done to address them. I am hoping that we can do that.
And the stories that you are going to hear are a composite of different people. I use fictitious names and alter personal details to protect their identify but they reflect the reality of the individuals we will be talking about in the community. Let us get started with this.
First of all, a little definition on serious mental illness. Serious mental illness is not a particular diagnosis. It is actually a constellation of mental disorders like schizophrenia, bipolar disorder, and as Dr. Hill indicated, depression. Each of these disorders interfere with major life activities and result in serious functional limitations.
Approximately around 14.2 million adults in the United States reported a serious mental illness in the past year. These illnesses constitute five out of the ten leading causes of disability worldwide. But recovery is possible and hope is possible with the right support and treatments. I am hoping that today you can see the type of work that we are doing to provide that support and those treatments for people and families addressing these types of issues.
The inequities that we are going to talk about today is that people with serious mental illness are dying at a much earlier age than the rest of the population. Data indicate between 13 to 30 years earlier. This is largely due to cardiovascular disease. This has been an ongoing finding for more than a decade now and even earlier of these major inequities within our population.
However, within the Latino community, we are starting to see a double health burden of disease here where you have the Latinx identity as a minoritized identity in the United States, plus all the challenges that come with serious mental illness. That intersection of those issues has increased the double health burden for these population. There is evidence of increased risk for cardiovascular-related mortality, diabetes, metabolic syndrome, obesity. However, this evidence is inconclusive. If you look at this evidence, most of the studies use small clinical samples. These are people engaged in care already or are participating in some type of treatment. And few analyses are stratified by subgroups.
This is super important for the Latino community because the Latino communities are highly diverse and heterogeneous populations and different groups have different risk factors and protective factors. I think it is important to stratify and disaggregate our groups to understand that and also the importance of gender and sexual identity are really important aspects of this. There is a lot more work that needs to be done in this area and this is one area that I tell my doctoral students, this is an area ripe for more research and more exploration to understand what is happening and also to figure out ways of addressing these inequities.
As I mentioned, there are critical gaps that persist in improving the heath of Latinos with serious mental illness. I will go through a couple of these major gaps that we have seen over the years in the work that we do.
First, we are seeing like in many other areas of science, we have done multiple systematic lit reviews. As you can see here, these are three from our group that have examined the evidence regarding lifestyle interventions for adults with serious mental illness and interventions that focus on diet and exercise. We also examine peer-based interventions. These are interventions led or co-facilitated by peer specialists, people with lived experiences with mental illness. And then more recently, one of our doctoral students, now a postdoc at the University of San Francisco, Mark Hawes – this is a great, wonderful, systematic lit review on smoking cessation.
In each of the systematic lit reviews, we see a stark underrepresentation of racial and ethnic minoritized groups in heath intervention trials. They are being excluded from this literature. It is really important to address this. This is not only a problem in the area of serious mental illness. We are seeing this across the board in clinical trials.
This is a recent publication by Turner et al. where they looked at 20,692 US-based clinical trials that have reported findings in clinicaltrials.gov, and what they found is really troublesome. First of all, 43 percent of the trials that are in clinicaltrials.gov that they use in this analysis reported race and ethnicity. And what you see here is a consistent underrepresentation of minoritized groups, blacks, Latinos, Asians, and American Indians, and an overrepresentation of non-Hispanic whites.
Why is this so important? As we have published in other places with my great colleague, Ana Baumann here at Washington University. The exclusion of historically underserved communities in clinical trials creates serious blind spots, not only in our treatment science but in moving the science into practice. That is a major component that we are trying to address in our study and in our work by providing studies that focus on a particular minoritized communities, that engages communities in the work that we are doing in order to move the science forward.
Another critical gap that we are seeing is that culture and social determinants of health are often ignored in this literature. These are critically important aspects. These factors matter in health as they shape your health behaviors, the diets that you do, the physical activity components. Culture and social determinants of health also influence illness experiences, how people cope, manage, and seek help for these issues. Culture and social determinants of health also influence client and provider interactions and clients’ interactions with the health care system. This is an area that we need more work.
And what you see here is a systematic lit review, one of the best systematic reviews in this area of intervention that address medical conditions and health behaviors among persons with serious mental illness, both psychosocial interventions and pharmacological interventions, and the words race, ethnicity, social determinants are not even mentioned in this article. We need to do more work in this area, and I hope that we can provide examples of what we are doing.
Before we jump into that, I also want to highlight a key component. What we are talking about today is not equality. We are talking about equity. As you can see here, it is a great slide that I use from the Robert Wood Johnson Foundation that sort of illustrates this difference. Equality focuses, as you can see, in providing everyone the same thing without considering their specific needs, circumstances, strengths, and needs versus equity forces us to look at the individual components. Equity, on the other hand, as you can see here, focuses on providing people with what they need to be successful based on their unique needs.
A one size does not fit all to address health equity. We need to do different things. We need to tailor our approaches, our interventions, our implementation strategy to address these complex determinants that shape our health and health care inequities. An equity lens forces us to ask about these differences and to be explicitly talking about the unique needs in our different communities. That is the framing that we have used in our work to really understand the unique components and then how to address and tailor our interventions and approaches to the needs of our communities.
In our work, we have done this. The approach that we have used for achieving equity is multi-faceted. First of all, we – as you will see in the different interventions that I will talk about, we are incorporating culture in a very explicit matter into these interventions, taking into consideration how culture shapes medical care, nutrition, physical activity, seeking help and support of our clients.
Many of our stories develops – we are developing stories that engage most participants who are form racial and ethnic minoritized backgrounds so that we have the samples and we are addressing the underrepresentation that these communities have in many of these clinical trials.
We are expanding the providers who can provide these interventions from social workers, peer specialists to address the realities of the health care system. We are also pushing these interventions outside of the clinic. We are going beyond primary care or public mental health settings but also pushing them out into supportive housing.
And lastly, we are integrating implementation science. We are really interested in understanding this inequity but to do something about it. How do we implement the best evidence that we have, that we are generating into routine practice settings and how to make them work. That is part of the heart of the work that we are trying to do.
Another principle and this is something that comes from a seminal report in this area of morbidity and mortality in people with serious mental illness published in 2006. This is a direct quote from that report that really encapsulates the approach that we take in our team that there are multiple strategies to pursue in addressing morbidity and mortality, in this case, with serious mental illness. But for any of these strategies to be successful, our principal partnership must be with the people that we serve. We really need to make sure that we are engaging our community along the path of research in the way that we do our work and to make the evidence relevant to those communities. This is a principle we try to put into action based on the work that we are doing.
In terms of what are the factors that influence these inequities? There is a constellation of factors that contribute to health inequities in the Latino population from the community all the way to health behaviors. What I am going to do today is actually present specific critical areas in which we have done work to address these inequities, targeting some of the modifiable – I will give you examples from the community medical care area. We will start with medical care.
One of the big challenges that we saw in this work early on is the difficulty that Latino clients have in navigating our complex many will say broken health care system in this country. This is a particular quote from an administrator in a study that we did several years ago, talking about the challenges that this person was seeing as they were trying to address the navigation of Latino clients going from mental health care system to the health care system.
As you can see here, what you see are patients partly because of their illness, cultural language issues, and because the system is not well organized, they often get lost in the system, in this maze in navigating between one or the other.
The patient gets overwhelmed, you are not feeling well, you may have symptoms of psychosis. You don’t speak the language. You are trying to figure out where to go. It can be very overwhelming, and patients get frustrated. Here is the important part. They do not get the care that they need and deserve. This is a critical area that many interventions are trying to address on how to help navigate our fragmentated health care system in this maze. And the impetus of our work has been to figure out how to create these interventions and make them relevant for our communities.
First call to action in order to address inequities is that we need integrated models of care that integrate both health and mental health in a very thoughtful way and there are many different models out there that have shown very good promise and that these integrated models of care should be the norm not the exception in our health care system. Health and mental health go hand in hand. One impacts the other, particularly in a population with serious mental illness.
But these models of care need to consider cultural and structural obstacles to care, not only that are integrated for everyone but how to integrate it, taking culture into consideration, taking structural determinants of health into consideration.
One intervention that we adapted – we adapted this great health care intervention created by Benjamin Druss and his team at Emory University. This was a part of my career development award several years ago. And we adapted this intervention called Bridges to Better Health and Wellness. What you can see here is a health care manager intervention. This person is placed in an outpatient mental health clinic and it is helping clients navigate between the public mental health services aimed to primary care services in their community. And the health care manager serves as a bridge between the mental health provider, the primary care provider, and also serves as a support system for the patient and their support system.
In their most basic form, health care managers are a bridge between all these players, and the goal is to create partnerships with all of the providers and patients so that the patients’ health issues are properly identified, evaluated, treated, monitored, and managed. And the health care manager intervention is something that social workers can do. That was one of the important interventions here to adapt it to Latino but also to social workers working in the outpatient mental health clinics.
But here is our approach. This was an intervention that had shown some promise, good evidence from the work that Ben Druss has done. But we wanted to adapt it to the realities of our community. When we adapted this intervention, we adapted it for an outpatient mental health clinic in upper Manhattan that served mostly Latino clients.
The approach that we took here was to really adapt the health intervention with our community to bring different stakeholders together, clinicians, peer advocates, psychiatrists, primary care providers, researchers and come together to develop an approach that we can collaboratively adapt these interventions. In this approach, we use CBPR principles, community-based participatory principles of the shared health concerns, the ownership that these interventions are not mine. It is actually for the community, the co-learning that happens when we bring people together and to build capacity within the outpatient mental health clinic to deliver this intervention.
In order to put those CBPR principles into action, we use an approach called intervention mapping, that literally lays a roadmap on how do you go about adapting an intervention, documenting those adaptations to make sure that they are not impacting or diluting the key elements of the intervention that will make them more relevant to the population and the service providers that we are working.
Let me give you some examples of those types of adaptations particularly in the cultural aspects of this. By using this approach, we adapted an intervention, looking at cultural relevance. I have used this slide many times. I love this slide. This actually comes from Roberto Lewis-Fernandez of thinking about how you think about culture and the interventions. You need to think about it with the iceberg approach in the sense that you have to think about the service-level components of an intervention, making sure it is in the right language, right literacy level, using materials that are relevant for your communications that has, in this case, a Latino flavor so it is engaging. But you also need to go underneath the intervention and go in a deeper level adaptation to systematically assess cultural factors that may be influencing how people use the health care system, what they think about their physical health issues, how they cope, what type of troubles and issues come up as they are seeking care, how do we empower our clients to be active participants in their own health care, and target specific attitudes and stigma that are in the Latino community as they are seeking care. We need to think about this in two levels as well: the surface level and the deep level when we are doing this type of outpatient.
Let me give you some concrete examples of what we mean by that. I will give you two of them. At the surface level for these interventions, remember, this is about navigating, coordinating care between the mental health system and the health care system. We wanted to empower clients to have information about their health conditions. We use this tool that is being developed by Coleman and others in care transition interventions where it is basically a personal health record. It is a communication and patient activation tool, as you can see here. This is provided to the client. The client gets this information. What is their health condition, their mental health condition, their medications, their recent labs, recent medications that they are doing? They have that information with them. And we share that information with all the providers. We want to make sure that everyone is on the same page here regarding what are the needs that the client has, what is happening, and be able to communicate.
And then embedded within personal health record, we also added some questions that the client can have, the patient can have in preparation for the visit and as they are doing their visit to engage them in their own health care to enhance their self-management skills. And we did this many years ago. We can put in an electronic medical record. When we did this, we did this paper and pencil because we had a very complex system that did not share electronic medical records, which is a major problem in our health care system. We have mental health and physical health separated and not sharing the same information. We wanted to make sure that they had this. And we checked on this every time we saw a client. Our intervention was a 12-month intervention, monthly visit with the health care manager. And in every visit, we refined and modified and updated the personal health record.
At a deeper level and for this intervention, we adapted, Roberto Lewis-Fernandez and others, the Cultural Formulation Interview for Health. As you can see here, you have the health assessment. This is what is usually assessed in a health care managed intervention - all these different things. When we examined the intervention, it was missing something. It was missing what are the clients’ stories of their own physical health issues. The clients in these interventions are all Latinos that have serious mental illness and are at risk for cardiovascular disease. By that, I mean almost everything under the sun that they are overweight or obese. They might be current smokers. Some have diabetes or hypertension or high cholesterol. In outpatient mental health clinics, 90 percent of clients usually have some comorbid health condition. We wanted to have an opportunity for the healthcare manager to interview, to provide information to the client but also to get information from the client about their own physical health. What do they think about their physical health? What do they think caused their diabetes or their hypertension? What have they done in their lives to address this? What do they fear around these conditions? This provided an opportunity to create a better understanding and to bring the cultural aspects of care to the surface to make it explicit for the health care manager to then address them.
And then the mere fact of asking these questions is very salient, particularly for Latino clients. This conveys to the client that the health care manager actually cares for them. It conveys personalismo, warmth, respect that you are not just a patient and a number. You are actually a human being and the health care manager cares about what you think and what you have done. And that information is really important for navigating and engaging that person into care.
Based on many of these interventions, we then pilot tested this intervention in public mental health clinics, serving predominantly Latino clients/adults in New York City. It is a 12-month pre-post one-group design. We did structured interviews, plus medical chart abstractions and we followed individuals at baseline, 6, and 12 months.
The key outcome of our intervention was to increase the receipt of preventive primary care. That people are receiving what they need from primary care. We are talking about vaccinations, screenings, their labs regarding their diabetes or hypertension, that type of thing.
We had a sample of 34 Latinos at risk for cardiovascular disease. And then we did both content analysis, a focus group at the end of the interview as well, at the end of the intervention as well as linear mixed models.
What did we find? We found that Bridges to Better Health and Wellness was feasible to deliver by social workers. We trained master-level social workers to take on this new role and with our supervision and our training, they were able to deliver this very nicely.
Eighty-five percent of those participants who we enrolled in our study completed the entire intervention. They stayed for the entire 12 months. Over the course of the intervention, we saw statistically significant improvements in patient activations so people being more engaged in their health care. They increased their self-efficacy, their confidence that they can talk to their doctor, that they have the skills to manage and cope with their chronic illnesses. And then we saw improvement in patients’ assessment of the chronic illness care that they were receiving, particularly for their health care manager. They were very satisfied with that service. And then in our main outcome, the receipt of preventive primary care increased from 29.9 percent to 54.9 percent. We saw this jump in that service.
Qualitatively when we asked clients what did you think about this intervention, we had our core elements, but we also began to identify some cultural factors and qualitative research is really important for this because it helps look at the nuance of how people are reacting to the intervention.
And what we saw was that there were cultural factors that shaped the connection with the health care manager by doing the interviews that I just mentioned, by being respectful, by providing individual attention, by being professional, by providing trust. And what you see here is a quote actually from a client. When we asked them how did you feel about your health care manager, this is what she said. She treated me very well like I was family. She talked with me with humility. She was very open. And thank God I had her for a year. That component was really important for making that engagement to having someone that can help you navigate the care, the system of care that… that maze that we talked about.
However, one thing that came out of this intervention is we connected people to care. They went to primary care. But their health did not improve. There were other things that got in the way as well. We did not see changes in their diabetes. We did not see changes in their obesity. We did not see changes in cholesterol levels. To us, this means that we need to continue to do other things.
But it also highlighted to us as part of this program is that most of the clients in these interventions were middle aged. It really got us thinking about how can we prevent these individuals from getting to a chronic illness. This is a major issue in the area of serious mental illness. When people get exposed to anti-psychotic medications, their illness, and other things, they are more likely of developing chronic illness. What are we doing in prevention?
Let me tell you about – the idea of this came from stories that we heard from our clients. This is a particular case. Enrique, who was in his mid-20s when we first met as part of this study. He described himself as Afro-Caribbean. He was diagnosed with schizophrenia in his early 20s after a series of psychotic episodes. And Enrique was doing well. He was taking his anti-psychotic medications but during our focus group discussion, he related that he had gained tremendous weight taking his medication. And he knew this medication that he was taking was an anti-psychotic medication and was necessary to keep him out of the psychiatric hospital. It was helpful to gain back his life, but it had started to impact his physical health.
When we met, he had just got news from his primary care doctor that he had high cholesterol and that his BMI was now in the obese range. This concerned him deeply as he worried about what this medication was doing to his body. He did not want to end up with a chronic medical condition so early in his life. And he summarized this dilemma that he was facing in this way. This medication cures you in one way, but they damage you in another. These health concerns that Enrique and people like him are talking about are real. If they are not properly addressed, Enrique’s weight gain and high cholesterol could result in a trajectory of poor health outcomes and potentially premature mortality. We need to do more about addressing these issues.
More recent work that we are doing is beginning to think about not only the medical care, but the health behaviors from the very beginning, as people are engaging with the mental health care system and how to address these issues.
The second call to action and critical area is that as mental health providers, we have a responsibility not just to screen and monitor these health conditions that are side effects of the medications we are providing our patients. We also need to intervene from the very beginning. If we are providing someone with a medication or a treatment that has a side effect that is impacting their physical health, we need to do something about it or connect people to the right health care to do so. This is an important area that we need to address.
If we think about when, what is a window of opportunity here to integrate health promotion and health prevention, early psychosis might be a critical period for addressing these emerging cardio-metabolic risks. We know from the literature, there are around 50 to 80 percent of young people like Enrique with early psychosis and exposed to anti-psychotic medication have gained seven percent or more weight gain during their first year of treatment. That is an enormous amount of weight gain. If you come from a minoritized community that are already at higher risk for things like diabetes and cardiovascular disease, this weight gain will definitely negatively impact their chances of developing into –
We also see trends of worsening metabolic indicators, glucose levels, cholesterol levels like you saw with Enrique. There are also high rates of smoking in the population studies report. Sixty percent of this population are current smokers when they are emerging in their psychosis. That is three times the national average in the general population.
And there are interventions out there to prevent cardio-metabolic risks in people with first-episode psychosis, but they are not implemented widely in routine practice settings.
One area that we think we can do good work and address inequities and integrate is in coordinated having specialty care for first-episode psychosis. These are multi-disciplinary and team-based, they are recovery-oriented, shared decision-making approaches, are part of the work that they do. There around 360 clinics across all 50 states and some territories in the United States that have some type of coordinated specialty care. And their emphasis is on individual needs and preferences. As you can see here, one component of this intervention is actually connection to primary care and medical care.
Leading this work is one of my great colleagues, Dr. Ana Stefancic from the New York City Psychiatric Institute and she currently working in a pilot and actually we have an R34 that is about to get funded hopefully on this area where we are really thinking how do we embed a health promotion program into coordinated specialty care that is connecting people to primary care, that is focusing on health promotion and prevention, healthy lifestyle, talking about diet and exercise, getting people free access to smoking cessation if they are smokers, providing peer support by peer specialists, other young people who have lived these experiences, and provide different flexibility in modality and resources, and focused directly on racial and ethnic minoritized groups to engage them in these interventions. This work is very exciting. We are about to continue this work and we have a great partnership with OnTrackNY to embed them as a potential area of work.
And this is one where we know what to do. This is a treatment algorithm for positive cardio-metabolic health in early psychosis interventions. This was developed in 2011 where it clearly indicates all the things that need to be monitored and then intervened upon. We know what to do here. We have the evidence of what to do.
What we need to do is shift the focus of care to include and value health promotion as an important area to address inequities. And this quote really encapsulates the focus of this work. A person with psychosis and taking psychiatric medication should not have to live a lifetime of physical illness to achieve good mental health. We need to balance both health and mental health go hand in hand and it is really important to address that.
The third point is actually something that is really important. I call it the elephant in the room. We are talking about serious mental illness and a major determinant of health in health inequity has to do with community-level issues and this is stigma in a sense. Stigma is a major contributor to the issues that we are facing and the inequities that we have seen in this population.
Let me give you a quick definition of stigma so we are on the same page. Stigma is a mark of shame of being tainted and discounted. Stigma happens in our social interactions as we interact with each other. There is quite a lot of literature linking stigma to unfavorable attitudes, beliefs, and stereotypes that result in people with mental illness being devalued, excluded, and discriminated against. Stigma influences how people engage with the health care system. It influences their disease. It influences how they cope with these illnesses.
The interesting thing about stigma is that it is both universal. Every culture around the globe stigmatizes the other. However, it is also specific to culture. The way we stigmatize, the language that we use, the processes that we use are very unique to the cultural aspects in that. That is where we need to fully think about how do we address stigma by bringing that cultural piece into bear here.
Our last call to action here is that we need to crush stigma at all levels. Advocacy, education, research, and contact-based interventions are needed.
To me, this is an area where we need a lot of work. Stigma is a fundamental cause of health inequities. Jeremy Goldbach as well as Hatzenbuehler have talked about this and has raised the level of this issue. As you can see here, stigma permeates the entire health care system.
I will give you several examples of our work where we are addressing these issues in our work. One area that has received a lot of attention is that stigma influence of the patient factors. It prevents people from delaying care. They provide poor engagement. And the work in the Latino community, we have seen that stigma impacts the entire pathway to and through care from illness recognition to treatment outcomes.
Let me give you an example. This is an earlier study that we did several years ago where we presented Latino immigrants, seeking care in a primary care clinic as a story of someone going through major depression. And then we asked them what do you think about this person? And 45 percent of the individuals that looked and that listened to this vignette could not identify that the person was depressed. They could say a lot of different things about the person, but they could not identify depression.
When we asked them, what do you think is happening with this individual? They attributed it to the person to social problems not mental illness. That is a major point here. If people have a conceptualization of their mental illness as a social problem and all we are providing them is a medication, there is going to be a mismatch between the type of services that we are providing. We need to address that.
And then they view depression as a serious issue but something that passes quickly, that improves with time, and that we control with a person without treatment. These are some of the issues that come into play as people are trying to engage.
There is also great literature on Latinos’ views of psychiatric medications. This is from multiple studies out there across the United States from different Latino groups, finding similar components here. That many Latinos view psychiatric medications as addictive and harmful. That they have fears of dependency and loss of control. That a medication is just a band-aid solution, just another pill that makes people feel drugged and numb and that it is a mark of social deficiency. It is only for locos, for crazy people, for people who are not right in their head. People who take medication are unable to cope with stress. And of course, these are issues that we need to address. If we are presenting psychiatric medication and trying to engage our Latino clients to take psychiatric medication, we need to be aware of these perceptions and begin to shift them.
More work has been done and actually that stigma impacts the actual receipt of care. This is a great study by Bill Vega and colleagues of 200 low-income Spanish-speaking Latinos in primary care who screen positive for depression and are receiving care and they compare here people who have high levels of stigma versus those that did not. And what they found is that those with high levels of stigma were at lower odds of actually following through with their medication and lower odds of being able to manage their symptoms and had higher odds of having a missed appointment compared to those with low levels of stigma. Stigma in itself influences how people engage in care and it is an important target if we want to address engagement and treatment.
And these inequities in mental health care persist in Latino communities. This is where I get a little sad to tell you the truth. I have had this slide since 2005, since I was a doctoral student. We continue to see this – from the Institute of Medicine report, from the Surgeon General’s report as well. We continue to see the serious persistent inequities in the underutilization of mental health care in Latinos, discontinue treatments prematurely, and then if they do receive care, that care is of poor quality.
In more recent data – this is a study by Kaur that just came out, using data from the National Survey on Drug Use and Health from 2005 to 2019. And what they found here is that you see some of the disparities or inequities decreasing, particularly for major depression, but the inequity is still there. And in certain areas, the inequity has not improved that much, particularly for people with serious mental illness, as you can see here. We still see a huge gap between populations and what to do. And when we look population wide, that is 69 percent of people with serious mental illness receive care. It is an important component but that means that almost 20 percent have not received care in the past year. That is a major issue that we have. We need to continue.
And as Margarita Alegria has mentioned, inequities in mental health care contribute to greater persistence, severity, and burden of mental disorders. This is for the individual. These inequities also ripple through the family, ripple through the community, and impact people’s well-being and approaches and have a bigger impact in their life beyond health care.
What are we doing with this? Trying to address this one area is how we are communicating and informing our population of the mental health issues. And what you see here are a sample of different depression brochures that are out there by different NIH institutes and different components. But when you really look at these materials and these are good materials in Spanish. It is good reading. These brochures tend to be unengaging, impersonal, and lack cultural relevance. We can do a better job of communicating and providing information about mental disorders to our community.
And these were highlighted when we used some of these brochures in a study many years ago and clients used to not take the brochures home. They would leave it at the office – please take this. They were like this is not for me. This has no relevance for me. We need to do a much better job of providing them.
With colleagues from the University of Southern California, we developed a fotonovela, which is basically a popular health publication tool, as you can see here, that uses a comic book layout with both photographs and text bubbles to tell a soap operate narrative. There is a narrative here. The idea is to entertain you as we are also providing you with information. And the idea is to increase recognition of depressive symptoms, reduce stigma, and appropriate health seeking.
We use this entertainment education approach, a communication strategy that embeds educational messages in popular entertainment. The goal is to entertain and set the stage for people to change attitudes because when people are entertained, their defenses go down and a message can go through, and people are more accepting of the information that they are receiving.
In a fotonovela, we wanted to increase knowledge, the recognition of depressive symptoms, learn about treatment options, learn about where and how to seek professional help, and to use the word depression. If you are feeling depressed, use the word depression or depression when seeking care. You are more likely to receive care if you ask for that service than not.
We also looked at the stigma literature. This is a contact-based approach in which they are seeing people that are struggling with depression within the soap operate narrative that dispel myths about depression treatments. We provide both negative and positive role models, emphasize that depression is a real medical condition, and that treatments work. There is hope there for people who have these disorders. And also model help care seeking and how to support someone in your family or in your social network that is going through this.
Again, we developed good cultural relevance here. At the surface, there was language and literacy level, reading at fourth grade reading level both in English and Spanish. It has this Latin flavor, Latin look. But underneath, it has this soap opera narrative. We place actually depression within a family context, a story of a mother struggling with depression, struggling to address these issues and the people around her and how it is impacting everyone around her and then targeting the specific stigma that we have.
As researchers, we also have a conceptual model, so we have an idea of how this is working. We have done some work to examine the impact that the depression fotonovela has some proximal outcomes. There have been two randomized controlled trials that we have done over the years, some that we did with Jennifer Unger at the Southern California, when she was there that we did with the development of fotonovela. And then Maria Hernandez, as a doctoral student at UC Berkeley at that time, tried to replicate these findings.
What these two randomized controlled trials did was to compare our depression fotonovela with the depression brochures from NIMH. We went to a community adult school in Los Angeles. And then Maria did a similar study but with a large multi-service community clinic in San Francisco focusing on Latino immigrant women at risk for depression. They compared fotonovela with a 45-minute discussion group about health and wellness and they used the same outcomes.
What both RCTs found is that “secret feelings” compared to the controlled conditions improved knowledge of depression and depression treatment particularly knowledge of depression treatments so opportunities of what to do when you have depression and significantly increased the self-efficacy, the confidence of identifying the need for treatment.
We had some impact on stigma – antidepressant – reduction on stigma to antidepressant medications. But this was between pre and post, and that impact actually disappeared at one month. The loss of stigma component that kept coming up. But we did reduce the stigma of seeking mental health care, which is a major component.
And then something really important for this type of work. Then we asked what did you do with the fotonovela once you read it? Our fotonovela was more likely to be shared with others than the controlled condition and that is social proliferation. I want to have people talk about this. I want to share it with others as an important element.
More recently, Nancy Perez-Flores, one of our NIMH T32 fellows and a PhD candidate, conducted a wonderful systematic lit review on the effectiveness of mental health literacy and stigma intervention for Latino adults in the US. We examined the methodological quality of these studies, described the interventions and summarized their outcomes.
And what she found was interesting but also a little bit concerning. We only found seven different studies that have looked at this, three RCTs and four single-group designs. Most of the studies were small pilot studies with very small samples and very short follow-up periods, less than a month. Studies were mostly conducted in California, Texas, and North Carolina and mostly Latinas of Mexican descent who participated in this.
These interventions tended to focus on depression and psychosis. However, the interventions really incorporated a series of cultural and linguistic elements like our fotonovela and other great work that make it relevant, salient, and culturally appropriate.
And what she found was that the existing interventions showed promise in improving knowledge, particularly for depression and psychosis. But it is showing mixed results in reducing stigma. There are some minor differences between the groups, but more work needs to be done here.
And then more recent work focused on how these approaches can actually change behaviors, which is of major of importance. Can these approaches help someone increase their help seeking, initiate treatment, and hopefully engaging care. That question has been addressed by one of our great colleagues, Katherine Sanchez from the School of Social Work at University of Texas at Arlington. She has done actually two great studies addressing these questions. The first one here, the DESEO study, a one-group pre-post study design at one federally qualified health center in Arlington, Texas. She had a sample of 350 Latino adults with depression. And the intervention that she tested was to use fotonovela with a discussion with depression social work educator and then engage them into primary care services focused on depression.
And what she found was that from baseline to one-month follow-up, there were significant decreases in depressive symptoms and decreases in stigma indicators, particularly stigma toward mental health care and stigma toward social distance so a reduction of that ideal social distance.
Stigma toward antidepressants actually continues to increase. Fotonovela – same thing that we have found in our study that this stigma to antidepressant medications is something that is very salient and it is hard to shift and she found that it actually is increasing over time.
An interesting and a really good outcome here is that at one-month follow-up, 89.5 percent of the people that participated reported receiving depression care. They were connected to care. And then she found – her team found that increases in depression knowledge associated with fotonovela was associated with treatment engagement in medication and counseling even after we controlled for depressive symptoms. We are seeing an impact of the fotonovela in treatment engagement, particularly increasing the knowledge.
In a follow-up RCT, now she did something a little more rigorous. With a two-group RCT, the metrics trial where she recruited 150 Latinos with depression and used measurements at baseline, education visit at one, six, and 12 months post enrollment and looked at key outcomes.
What she found here was that both groups actually have significant decreases in depression symptoms. They were all connected to the same type of treatment and 80 percent of the participants reported a 50 percent or greater reduction in their depression from baseline. That is a great finding.
However, she did not see any differences between our groups, the fotonovela groups with a standard health education, particularly increasing knowledge, reducing stigma and treatment engagement.
Her trial really highlighted that the fotonovela is not a panacea for everything. We need to do more work. We need to figure out how to adapt it to the realities of the population and that this is just one component of larger approaches needed to address the stigma and knowledge that influences this.
Let me give you some more examples of other areas where stigma is important, particularly in the clinical encounter where stigma really also influences. In a study we did several years ago that we looked at the primary health care experiences of Hispanics with serious mental illness, we found that 40 Latinos were engaged in primary care. We recruited them from an outpatient mental health clinic and then did this mixed-methods study to examine their experience as we have seen in care.
We developed this grounded model and at the heart of this grounded model from this data, there was this perceived discrimination and stigma that was very salient for these clients. Let me give you an example of what that means.
We found an intersection of discrimination and stigma in the health care system for Latinos with SMI. Seventy-five percent of the clients we interviewed reported that racism is a problem in the health care system and people are treated unjustly in the health care system because they are Latinos. Sixty percent endorse that. That they do not speak English very well. Sixty-eight percent endorse that. They are discriminated again because they have a serious mental illness, 60 percent endorse that. As you can see, immigrants and blacks.
I want to remind everyone. These are all people receiving care. These are people engaged in the health care system and this is what they are reporting as their experiences. How does this influence their health care? It influences them in major issues. Let me give you an example from Marcos. This was a Puerto Rican male with schizophrenia and diabetes. In one of our focus group discussions, he talked about an experience that this person had seeking care. One time it happened in the hospital. My stomach hurt and I kept telling them, but they just gave me Tylenol. I ended up passing out. It was my appendix. They just did not believe me. This is a classic example of diagnostic overshadowing that there are situations where medical providers question and doubt the patient’s physical health complaint because they see that the person also has a mental disorder. In other words, a psychiatric disorder tends to overshadow the patient’s physical complaints leading to misdiagnosis and in many ways, receiving inappropriate medical care for their conditions. There is a lot of stigmas that happens here regarding that. We need to do something about it to prepare our primary care providers to address these needs and to not have the diagnostic overshadowing.
And this particular question has been taken up by a great colleague, Eliut Rivera-Segarra at the Ponce Health Science University in Puerto Rico, where he wrote a wonderful study several years ago addressing the stigmas that are faced by Puerto Ricans with serious mental illness, seeking care in primary care. He saw examples of blaming the patient for their health conditions, the inability to recover and as you can see here, the diagnostic overshadowing.
Eliut and I have been partnering together, taking my Bridges to Better Health and Wellness Intervention and adding a component to train primary care providers to not be stigmatizing to train them on how to talk with clients, how to address their physical and mental health issues, and to reduce the stigma that they might have in their interaction. He is using a really cool approach where he is using videos to illustrate what an interaction will be, an encounter stigma interaction will be compared to one that is stigmatizing and then providing the providers skills on how to do that and give them feedback so that the providers are not only learning about this but they can practice it and learn their skills.
A really important element. We are in the process of piloting the integration of the component to intervention and we have a proposal out there for a larger trial to really test the impact that this intervention will have in connecting Puerto Ricans with serious mental illness to primary care and receive the care that they need.
And then lastly, in a great paper that was published about a year or so ago by Dr. DuPont-Reyes at Columbia University had this great article about the importance of Spanish-language media in addressing mental health equity in the Latino community. Her paper did a really nice job of addressing the huge gap that we have on examining how the Spanish-language media in the United States may be perpetuating a stigmatizing attitudes like other medias have done and how can we use the power of Spanish-language media to address some of these inequity issues.
As you think about it, media is really important. Spanish-language media can shape the public’s views of mental illness and treatment. Societal norms and context are important in shaping that.
Inspired by DuPont-Reyes’ study, we recently did a systematic analysis of Spanish-language news reports that focus specifically on schizophrenia and psychosis. We wanted to examine using models that have been used for English-language media to examine the presence of stigmatizing stereotypes, to see if there are any recovery themes being reported in the Spanish-language media, and then at the Spanish-language media, using best practices for reporting on mental health issues.
This is a work that we are doing with Nancy Perez-Flores as well and we did the systematic content analysis and we looked at news reports that are out in the web from two of the largest TV networks, Spanish-language networks, Univision and Telemundo, from 2012 to 2021. And then we supplemented that with a wonderful database of newspaper articles throughout the United States called the US Hispanic Newsstand. We were looking for Spanish language news content and then we did a directed content analysis following with these and other approaches to really examine what is being reported.
This is what we are finding. This is work that has not been published yet. These are preliminary findings, but we wanted to show this because it really highlights of where we are with the Spanish-language media.
The other thing that I want to mention is that Univision and Telemundo are major TV networks in the United States and are viewed by millions of people, larger than some of the English-language networks. How are they presenting and reporting on these issues are really important? It is how people are communicating in the Spanish language. There have been very little studies targeting Spanish-language media in these issues to examine how is mental illness being discussed, particularly issues like schizophrenia and psychosis.
This is what we found. Sixty-two percent of the 108 Spanish-language articles that focus during that time on schizophrenia or psychosis had a stigmatizing frame, meaning that the story itself was stigmatizing. In particular, 53 percent of the studies focused on violence, incompetence of people with schizophrenia and psychosis. They report on criminal activity and less often on suicide.
When we looked at recovery themes, we found that 19 percent included some information about schizophrenia and psychosis. Very few studies talked about stories of recovery from mental illness, only 15 percent, and only 11 percent included any themes of hope and optimism. We have seen similar to English-language media, we are seeing lots of stigmatizing reporting of these conditions, particularly on the violence and criminal activity when we know people with serious mental illness are not more likely to be violent. They are actually more likely to be victims of violence. We are seeing this major component from the Spanish-language media.
And then when we look at best practices, we actually examine best practices that are being put out there for reporters to report mental illness. From the Carter Center, McGinty had a great article on this in 2018 of different practices that the Canadian Government has some guidelines of how to best report.
First of all, the majority of articles are using first-person language like persons with schizophrenia, persons with psychosis, which is very good news that reduces the stigmatization that happens. But other than that, we are seeing major (inaudible), for example. Only six percent of the articles that we examined provided any information about mental health treatment options. And only 8 percent provided any information of where to seek mental health care in this. That is a major component. And over 48 percent included the voices of people with mental illness or their caregivers. There is a lot more work that needs to be done here. And the power of media can be used to reduce stigma and I think we need to engage with the Spanish-language news articles/networks to address that. And people like DuPont-Reyes is doing something very interesting work in this area that needs to be done. But this is an area where if we want to address the inequities and the determinants of health, this is one where we can do something about it and engage in this component.
We are coming to the end of this. Just to recap, the three critical areas to address the health and health care inequities based on the work that we are doing, in these areas of the integrated models of care should be the norm, not the exception, and that these models need to consider cultural and structural obstacles. To prevent the physical health issues and improve health care in the community, we not just screen and monitor but we need to intervene from the very beginning to focus on health promotion and prevention and that we need to crush stigma at all levels to improve health care.
I want to leave you with this last quote from a great colleague of mine, Dr. Vetta Thompson here at the Brown School of Washington University who I greatly admire for her dedication on the work on eliminating health inequities in the black community. I think this quote encapsulates where the field needs to go and we are at that point where we can start doing this. To achieve health equity, we must be willing to intervene directly on the social determinants and practices and policies that sustain the systems of inequity. We need interventions at those levels and multi-levels in order to address it. We are hopeful that this work can move forward. There is much more to be done of course and we thank the National Institutes of Mental Health for this opportunity to showcase this work and to highlight the importance of improving health equity in the Latino community. Thank you. Gracias for this. This is my information. Happy to take any questions today and hopefully engage in a conversation about these talks.
LAUREN HILL: Thank you so much. That was fabulous. That was fantastic. We do have a number of questions in the chat. But moderator’s prerogative! I am going to start with a question first. It is so evident how rich the research becomes and how informative the research becomes when you engage the perspective of members of the community.
I am going to flip that around and ask you what are we losing when we do not go to the community. Can you give us a couple of examples of maybe where we are getting it wrong or how the research suffers, how the rigor suffers? What are we getting wrong if we do not engage the community?
LEOPOLDO CABASSA: Great question. I think there are multiple things. For example, in our work, we are very interested in how people think our interventions are working and by not engaging our community, we might completely miss what is the important aspect of the intervention that were salient for the population. That is one area where we see –
For example, many years ago, we did this study for depression care and primary care. And we provided people – this is people with diabetes and depression and they received this wonderful evidence-based practice, problem-solving therapy, medication management. And when we asked people what is it that you liked about this intervention, it was not the problem-solving therapy. It was not the medication. That helped. They used it. But it was actually the human connection that they made with the health care manager, with their therapist, the respect that they received, that idea that they have someone that can care for them and that we would have missed if we had not asked.
The other component is the type of questions that we are asking are really important. And by bringing community stakeholders to the table from the very beginning, we can begin to address some of those issues. We had another study. We did not present it here, where it is really an intervention in supportive housing agencies. That whole project began by engaging clients in those supportive housing agencies through our participatory process to identify what type of intervention would be helpful for them.
As experts, we have an idea of what that will be but we also need to figure out what people want and what they wanted is a peer-based intervention. They did not want a professional telling them what to eat and how to exercise. They wanted someone that had lived their life, that had walked in their shoes to tell them the struggles and to teach them how to do that. Peer specialists were really important for that. They wanted an intervention – do not tell me to go somewhere. Bring that intervention to me. Why do we need to go to the clinic? Why can’t you bring that intervention to the supportive housing agencies where we live like other populations get. That was another component of that. I think that is another piece.
The last one – it is something that I learned from Ken Wells, that by engaging the community, we are also building infrastructure and capacity for the communities to take ownership of those interventions of the research process and to build that capacity for them so that they can advocate for themselves and advocate for the work that they need to do. I think there is a great example – Ken Wells and Miranda are good examples of this to really think through how do you engage the community to make these interventions? Those are some examples that I will say for that. And it is a missed opportunity when we do not do that.
LAUREN HILL: Thank you. Wonderful. Going to the chat, we have a question. The success of health care managers. Do you think this is attributable to individual characteristics of the health care managers themselves, the training, or both?
LEOPOLDO CABASSA: That is a great question. I think it is a little bit of both. I think it is a little bit of everything. For this intervention particularly, we actually picked two types of health care managers. We picked a health care manager Latina, bi-cultural health care manager that had been working in the field for many years as an experienced social worker. We wanted to see if we can train and supervise someone that already has a set of skills and has taken on this new role. And we also examined this with a new social worker, someone who had just graduated from the school of social work. I think personalities help here.
But then we tried to systematize this, to provide that cultural relevance, to say when you talk to your clients, please use their last name. Please be respectful. Treat them like they were family to you. Care about who they are. That cultural formulation interview was really important. Many clients talked about nobody had ever asked me about what I think of my diabetes or what I think about my hypertension. These are people who have been in care for many years. That provided – I think we can provide some skills, provide some training and supervision around these types of issues to make it more culturally appropriate. I think that is something that we could be done.
We are now taking that intervention and doing that in Puerto Rico, adapting it into the Puerto Rican context and we are going to be able to address some of this question like can we continue to train and replicate those findings. That is a different context and different cultural issues but I think it is really important. I think it is both.
But at the end of the day, health care managers – good health care managers treat someone with respect, provide them the right information, and develop trust. It is a good human relationship that is engaging there. It also tells us something about our health care system and how people are missing being connected to a provider in this manner. Basic humanity – is what happens.
LAUREN HILL: Goes a long way. It goes a long way, right? It goes a long way.
Another question is do we know why smoking rates are higher in this population.
LEOPOLDO CABASSA: That is a great question. There are many different hypotheses and work from that of why there is high level of smoking. There is some related to people’s actual coping mechanisms and illness. There has also been some work on how people with severe mental health disorders have been targeted specifically by the tobacco companies for the smoking component and focused advertising.
Also remember, the last places to go in smoking cessation in this country were psychiatric hospitals and psychiatric units. The other reason people are not being offered smoking cessation – they say this is part of their illness. They are coping with this. Let them do that. To me, that is a missed opportunity. The number one killer in this population is smoking. We need to do a much better job. There are many different reasons I think for that. But it is a missed opportunity because we see smoking levels going down in other populations than in people with serious mental illness. We are not seeing that reduction.
LAUREN HILL: Another question. Did the Latinos relate depression to social issues and not a mental illness, or was it the care provider? Sorry. I got confused.
LEOPOLDO CABASSA: That is a great question. In that study when we asked people, what do you think is causing this situation with Maria. And we have basically presented all the symptoms of major depression. We never mention depression. We made all the symptoms. And they all related it to social issues. This is someone that is having problems at home. This is some immigrant. They are having immigration problems. They link the symptoms themselves to a social condition. That is an important element. That is why people are conceptualizing their illness. We are still seeing that.
Interestingly enough, people have good knowledge of those symptoms. They can identify them. They know what they are but not putting them together as a medical condition – to us, this is really important because as I mentioned in the talk, if a person attributes their illness to a social condition and I am providing them a treatment that does not address that social condition, they might be more likely to disengage like I think this is due to my immigration. This is due to difficult parts of my life and you are giving me a pill for that. We have to make that connection. A pill may be useful here. Do not get me wrong. But there has to be at least caution of how this type of medication will influence and help you with this issue that you are having and then thinking about all the other social conditions that may be impacting that component. Medications are important. Do not get me wrong. They are the first line of treatment for many of this. But we also need to think about the social conditions and link them together to have better outcomes.
LAUREN HILL: That sounds something like when you were talking about the cultural formulation interview where you get a sense of how the people understand their illness and then how to connect that to the treatment that is being offered and try to bring those together.
We have a couple of questions about your contact information and the webinar recordings. We will get that information towards the end because I will ask folks to email us and I have asked Jane to be ready to say our email address, which I do not know by heart and I will give her a few minutes to find that.
Here is another question. Dr. Cabassa, thank you for your body of work. Can you share how you identified which community stakeholders to engage in your work in New York City?
LEOPOLDO CABASSA: Great question. As an implementation scientist, this is a really important question. Implementation science helps us see who is going to be involved in this intervention to look at it at multiple levels. Who are the people who this intervention is salient to and thinking about it from beginning to end. The directors of the agencies. They need to support the intervention. The clinicians and the practitioners who are going to be delivering the care. Then we need to also think about who is receiving this intervention. Are they clients and their family members? And then on top of that in a public mental health system, who are the stakeholders that can support this intervention so people from the Office of Mental Health, for example? Thinking through who has a stake, who will influence all the components of the intervention. We try to identify them and then try to look for people who are engaged in this type of work and who are willing.
In the collaborative intervention planning approach, we bring these individuals together. We pay them for their time and their effort. And we are there to increase their knowledge but also their capacity and that we value the wisdom that each of these individuals bring. As an expert, as a scientist, I bring some set of expertise. A client has another set of expertise around what it is to live with a mental disorder or chronic illness. A provider has a set of expertise. The administrator has a set of expertise. We want to bring all that wisdom together and value all of those sources of knowledge to help us improve the intervention to a reality. Those are some of the ways. We think about multi levels throughout for that.
LAUREN HILL: Someone asked, can you point us in the direction of the research behind your statement that people with SMI are less likely to be violent and more likely to be victims of violence? I do not know if you have that citation.
LEOPOLDO CABASSA: I do not have that citation on hand. I can definitely get it if you’d like.
LAUREN HILL: You can send it to us and then – we have heard that many times. It is absolutely an unfortunate truth. If you can just email us – person, who asked the question and we will try to find that and get that to you.
We are getting a lot of what a great presentation. Thank you so much, Dr. Cabassa. That was a quote. Were the care managers in the integrated care model also Latinx?
LEOPOLDO CABASSA: They were. Yes. The health care managers. Yes, they were bi-cultural so Latinx for sure. They were bilingual. Actually, Native Spanish speakers. That is important to do that. But I think we can also train other people as well to take on this role with the right approaches and the right supervision. Yes, those were one Latino, one Latina and Native Spanish speakers.
LAUREN HILL: Wonderful. Here I go. Dr. Monolingual is going to say. Ready? Obrigado minuto! Any links to share for advocacy recommended? How did I do?
LEOPOLDO CABASSA: You did good. But obrigado – I think obrigado is Portuguese, if I am not mistaken.
LAUREN HILL: I said monolingual.
LEOPOLDO CABASSA: Any links for advocacy recommended? There are many organizations that work on this area. Mental Health America is one that does that. The National Council on Mental Health Wellbeing has a integrated. SAMHSA has integrated care that now is by the National Council. There are several organizations that are working in this area for that type of work.
LAUREN HILL: Fantastic. Another – kudos here. Excellent job. Congrats, Leopoldo. Question. May some of the study conclusions be applied to other chronic diseases’ results in the Hispanic community?
LEOPOLDO CABASSA: That is a great question. I think so. Some of the work in the health care manager, for example – what is happening in the health care manager is actually interventions that are being used for diabetes in the general population for cardiovascular disease. The personal health record that we use is actually an intervention that works on care transition, people coming from the hospital after a major health condition, not serious mental illness, but a major health condition and then transitioning them back into the community and providing that. I think a lot of that work –
Some of the work that we have done on obesity and cardiovascular disease – actually, we have adapted a diabetes prevention program to this population for blacks and Latinos with serious mental illness. A lot of the interventions out there that work with the general population are beginning to be adapted for that. There are other groups around the nation doing this type of work for that. Yes, a lot of that. Actually, we have learned – I read a lot of the chronic illness literature in the Latino community and other communities without mental disorder to learn about these interventions.
LAUREN HILL: Fantastic. This one. We are a culturally responsive organization in Jackson Heights, Queens in New York. Voces Latinas. We work with the promotora model and completely believe in the lived experience that our peers bring to the work. We developed a PSA for mental health in the Latino community in Spanish. We understand Spanish media is very effective but they are also very expensive. How can CBOs that are doing community-driven work get across to these networks?
LEOPOLDO CABASSA: That is a great question. First of all, continuing the promotora model and continue to support and train and supervise and provide good opportunities. That is really important. People want to see promotoras. A little different than peer specialists but they are still people from the community. I think that connection is really important.
The Spanish-language media. That is a larger one. This is new to us in our work. We are starting to reach out to different media outlets locally and nationally so developing a PSA is important. But other opportunities to speak to the language media, to Spanish-language media is important. They are, I think, conglomerates and channels would like more information about this. But it is expensive like any other media. I do not have an answer for how to make it less expensive. But it is really important. I think creating partnerships with radio stations, with news channels in Spanish is important.
I am in the Midwest so Spanish-language media is extremely important for a community because it might be the only source in their language that they get. Those partners are important. Radio stations. Believe it or not. Radio stations are important in areas in rural communities that may have maybe one channel and one TV station or maybe one radio station in Spanish. So collaborating with them – if you can share information about that is important for that.
LAUREN HILL: Wow. That is great information. When you think about the geographic differences as well as some of the other intra-group differences that impact people’s access to information.
There was a question about our email. The answer is yes. This is, in fact, the correct email. email@example.com. Thank you for typing that in there. You all can contact us and we will get you follow-up information of all types.
Next question. As someone that is the first point of contact for individuals seeking mental health treatment, how can I (audio cuts out) sensitive and support Latinx individuals who are experiencing mental health disparities?
LEOPOLDO CABASSA: Lauren, can you repeat the first part? You got frozen there.
LAUREN HILL: Certainly. Sorry. This is from someone who is themselves the first point of contact for individuals seeking mental health treatment. They want to know how they can ensure that that first interaction is culturally sensitive and supportive for Latinx individuals who are experiencing mental health disparities.
LEOPOLDO CABASSA: Great question. I think the first component is make sure to listen, to respect what people are saying. I think the elements of the cultural formulation interview are really important because it helps the person tell the story of what they are going through to validate that this is a real condition, to validate that, yes, this is something that there are opportunities for helping and treatments that are there because people feel – these are stigmatizing so providing that. If you can connect them with someone who has gone through that experience and is receiving care, that is another good approach of helping connect someone to the care that they need. But validation, support, and then providing them action plans like what to do. Yes, you are having this. Where did you go? How to connect you with it. And that this is an ongoing process, not a one-shot deal. There might be multiple conversations that need to happen and supports around that.
LAUREN HILL: Wonderful. Let us take a couple more. But first, let me give you the webinar link. www.odwdwebinars.org. We will post this webinar in a few weeks.
One other question here. What role and how much does capitalism play into all of this? Doctors try to get people out of the door quickly because of billing. It seems like it is all about the money and no genuine care for the individuals being served. Some clash of different cultural values there.
LEOPOLDO CABASSA: Definitely. And our healthcare system in this country sadly enough – health is a commodity. Health care is a commodity. I personally think it is a human right and everyone should receive high-quality medical care. But in our system of care, it is. The reason we had a health care manager intervention is because of that because doctors do not have enough time to provide all the services to connect that. We need another person to help with that process.
I have done this presentation multiple times and I remember one is like what we need is to destroy the maze and rebuild the health care system. I am like yes. We need to do that and hopefully we will get there at some point. But for now, how do we help navigate this fragmented care? It is. It is an issue that comes into play.
One simple component, for example, was this idea – like when you go to a doctor, a lot of doctors now have iPads. They are entering things into the computer. That is super impersonal. From our clients, people are saying when I go to the doctor, they do not even look at me. They are entering stuff into the computer all the time. It is for efficiency purposes but how the clients are observing that. What does it convey to them? It is a really important component. Sometimes we work towards efficiency, low-cost, going quickly and we are forgetting the human side of this. I completely agree for that. But there are interventions out there that can help with those types of things. Our health care manager is one approach to have that extra person provide that care and that personalization that is so needed.
LAUREN HILL: Absolutely. Honestly, one final question because we have one wrap-up slide. Here you go. If you could wave a magic wand and change one thing to improve equity for Latinx with SMI, what would it be?
LEOPOLDO CABASSA: That is a great question. I wish I had multiple wands. But if I have one, I think the prevention part. I think in our country – this has to do with the mental health care of everyone. If someone gets exposed for the first time in anti-psychotic medication that is going to have side effects, we need to work on health promotion, providing those two things together as part of a treatment package to set someone on a path of health and not put people in this bind. I think focusing on that, integrating that, making health a priority in mental health, mental health a priority and help bring those two things together are really important. I think we could do a better job of doing that and as an opportunity. It could set someone in the path towards health rather than inequities.
LAUREN HILL: Fantastic. Thank you so much.
Can we have the closing slide because we are almost at the hour here? Apologies to folks who still had questions in the chat. Thank you so much for engaging. We will do our best to respond to those offline. As we wrap up our last minute, we are coming up on our final webinar for the 2023 ODWD webinar series, which will be our James Jackson Memorial Award lecturer. Congratulations to this year’s winner, Dr. Lisa Bowleg. Our award lecture will be on Wednesday, October 25 from 9 a.m. to 11 a.m. by webinar and we hope that you all will join us.
Thank you once again to Dr. Cabassa. The webinar has concluded.