In this episode you will discover:
If you've ever wondered how to better support multilingual families navigating aphasia, or felt uncertain about cultural considerations in your practice, this conversation will give you both the framework and the practical insights you need. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab, and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that tackles one of the most important conversations happening in our field right now - how do we truly serve the increasingly diverse communities that need aphasia care? We're featuring Dr. Jose Centeno, whose work is reshaping how we think about equity, social justice, and what it really means to expand our diversity umbrella. Dr. Centeno isn't just talking about these issues from an ivory tower - he's in the trenches, working directly with communities and training the next generation of clinicians to do better. Before we get into the conversation, let me tell you a bit more about our guest.
Dr. Jose Centeno is Professor in the Speech-Language Pathology Program at Rutgers University. What makes his work unique is how he bridges the worlds of clinical practice and research, focusing on an often overlooked intersection: what happens when stroke survivors who speak multiple languages need aphasia care?
Dr. Centeno is currently exploring a critical question - what barriers do Latinx families face when caring for loved ones with post-stroke aphasia, and what actually helps them navigate daily life? His newest initiative takes this work directly into the community, where he's training students to bring brain health activities to underserved older adults in Newark's community centers.
As an ASHA Fellow and frequent international speaker, Dr. Centeno has made it his mission to ensure that aphasia research and care truly serve diverse communities. His extensive work on professional committees reflects his commitment to making the field more inclusive and culturally responsive.
So let’s get into the conversation.
Katie Strong: As we get started, I love hearing about how you came into doing this work, and I know when we spoke earlier you started out studying verb usage after stroke and very impairment-based sort of way of coming about things. And now you're doing such different work with that centers around equity and minoritized populations. I was hoping you could tell our listeners about the journey and what sparked that shift for you.
Jose Centeno: That's a great question. In fact, I very often start my presentations at conferences, explaining to people, explaining to the audience, how I got to where I am right now, because I did my doctoral work focused on verb morphology, because it was very interesting. It is an area that I found very, very interesting. But then I realized that the data that I collected for my doctorate, and led to different articles, was connected to social linguistics. I took several linguistics courses in the linguistics department for my doctorate, and I needed to look at the results of my doctoral work in terms of sociolinguistic theory and cognition. And that really motivated me to look at more at discourse and how the way that we talk can have an impact on that post stroke language use. So, I kept writing my papers based on my doctoral data, and I became interested in finding out how our colleagues working with adults with aphasia that are bilingual, were digesting all this literature. I thought, wait a minute. Anyway, I'm writing about theory in verb morphology, I wonder where the gaps are. What do people need? Are people reading this type of work? And I started searching the literature, and I found very little in terms of assessing strengths and limitations of clinical work with people with aphasia.
And what I found out is that our colleagues in childhood bilingualism have been doing that work. They have been doing a lot of great work trying to find out what the needs are when you work with bilingual children in educational settings. So that research served as my foundational literature to create my work. And then I adopted that to identifying where the strengths and needs working with people by new people with aphasia were by using that type of work that worked from bilingual children. And I adapted it, and I got some money to do some pilot work at the from the former school where I was. And with that money I recruited some friends that were doing research with bilingual aphasia to help me create this survey. So that led to several papers and very interesting data.
And the turning point that I always share, and I highlight was an editorial comment that I got when I when I submitted, I think, the third or fourth paper based on the survey research that I did. The assessment research. And one of the reviewers said, “you should take a look at the public health literature more in depth to explain what's going on in terms of the needs in the bilingual population with aphasia”. So, I started looking at that and that opened up a huge area of interest.
Katie Strong: I love that.
Jose Centeno: Yeah, that's where I ended up, you know, from an editorial comment based on the studies of survey research. And that comment motivated me to see what the gaps were more in depth. And that was in 2015 when that paper came out. I kept working, and that data led to some special issues that I invited colleagues from different parts of the world to contribute. And then three years later, Rutgers invited me to apply for this position to start a diversity focused program at Rutgers, speech language pathology. At Rutgers I met a woman that has been my mentor in qualitative research. Pamela Rothpletz-Puglia is in nutrition, and she does qualitative, mixed methods research. So, her work combined with my interest in identifying where the needs were, led me to identify the needs in the work with people with aphasia through the caregivers using her methodology. And I'll come talk more about it, because it's related to a lot of different projects that I am pursuing right now.
Katie Strong: I love this. So, it sounds like, well, one you got a really positive experience from a reviewer, which is great news.
Jose Centeno: Well, it was! It’s a good thing that you say that because when we submit articles, you get a mixed bag of reviews sometimes. But, this person was very encouraging. And some of the other reviews were not as encouraging, but this was very encouraging, and I was able to work on that article in such a way that got published and it has been cited quite a bit, and it's, I think it's the only one that has pretty much collected very in depth data in terms of this area.
Katie Strong: Yeah, well, it sounds like that really widened your lens in how you were viewing things and taking an approach to thinking about the information that you had obtained.
Jose Centeno: And it led to looking at the public health literature and actually meeting Pamela. In fact, I just saw her last week, and we met because we're collaborating on different projects. I always thank her because we met, when our Dean created an Equity Committee and she invited the two of us and somebody else to be to run that committee. And when Pamela and I talked, I said to her, “that qualitative work that you are doing can be adapted to my people with aphasia and their caregivers”. And that's how we collaborated, we put a grant proposal together, we got the money, and that led to the current study.
Katie Strong: I love that, which we're going to talk about in a little bit. Okay, thank you. Yeah, I love it. Okay, well, before we get into that, you know, one of the things I was hoping you could talk about are the demographics of people living with aphasia is becoming really increasingly more diverse. And I was hoping you could talk about population trends that are driving the change or challenges and opportunities that this presents for our field.
Jose Centeno: Yeah, that is actually something that I've been very interested in after looking at the public health literature because that led to looking at the literature in cardiology, nursing, social work, psychology, in terms of diversity, particularly the census data that people in public health were using to discuss what was going on in terms of the impact of population trends in healthcare. And I realized when I started looking at those numbers that and interestingly, the Census published later. The Census was published in 2020, several years after I started digging into the public health literature. The Census published this fantastic report where they the Census Bureau, discussed how population trends were going to be very critical in 2030 in the country. In 2030 two population trends are going to merge. The country gradually has been getting older and at the same time in 2030 as the country is getting older, 2030 is going to be a turning point that demographic transition, when the population is going to be more older people than younger people. So that's why those population trends are very important for us because people are getting older, there is higher incidence for vulnerabilities, health complications. And of those health complications, neurological, cardiovascular problems, stroke and also dementia.
Katie Strong: Yes. So interesting. And maybe we can link, after we finish the conversation, I'll see if I can get the link for that 2020 census report, because I think maybe some people might be interested in checking that out a little bit more.
Jose Centeno: So yeah, definitely, yeah.
Katie Strong: Well, you know, you've talked about diversity from a multilingual, bilingual perspective, but you also, in your research, the articles I've read, you talk about expanding the diversity umbrella beyond race to consider things like sexual orientation, socioeconomic background and rural populations. Can you talk to us a little bit about what made you think about diversity in this way?
Jose Centeno: Very good question, you know, because I realized that there is more to all of us than race. When we see a client, a patient, whatever term people use in healthcare and we start working with that person there is more that person brings into the clinical setting, beyond the persons being white or African American or Chinese or Latino and Latina or whatever. All those different ethnic categories, race and ethnicity. People bring their race and ethnicity into the clinical setting, but beyond that, there is age, there is sexual orientation, there is religion, there is geographic origins, whether it's rural versus urban, there is immigration status, language barriers, all of those things. So, it makes me think, and at that time when I'm thinking about this beyond race, I'm collecting the pilot data, and a lot of the pilot data that was collected from caregivers were highlighting all of those issues that beyond race, there are many other issues. And of course, you know, our colleagues in in aphasia research have touched on some of those issues, but I think there hasn’t been there. There's been emphasis on those issues but separately. There hasn't been too much emphasis in looking at all of those issues overlapping for patient-centered care, you know, bringing all those issues together and how they have an impact on that post stroke life reconfiguration. You know, when somebody is gay. Where somebody is gay, Catholic, immigrant, bilingual, you know, looking at all of those things you know. And how do we work with that? Of course, we're not experts in everything, and that leads to interprofessional collaborations, working with psychologists, social workers and so on.
So that's why my work started evolving in the direction that looks at race in a very intersectional, very interactional way to look at race interacting with all these other factors. Because for instance, I am an immigrant, but I also lived in rural and urban environments, and I have my religious and my spiritual thoughts and all of those, all of those factors I carry with me everywhere you know. So, when somebody has a stroke and has aphasia, how we can promote, facilitate recovery and work with the family in such a way that we pay attention to this ecology of factors, family person to make it all function instead of being isolated.
Katie Strong: Yeah, I love that. As you were talking, you use the term intersectionality. And you have a beautiful paper that talks about transformative intersectional Life Participation Approach for Aphasia (LPAA) intervention. And I'd love to talk about the paper, but I was hoping first you could tell us what you really mean by intersectionality in the context of aphasia care, and why is it so important to think about this framework.
Jose Centeno: Wow. It's related to looking at these factors to really work with the person with aphasia and the family, looking at all these different factors that the person with aphasia brings into the clinical setting. And these factors are part of the person's life history. It’s not like these are factors that just showed up in the person's life. This person has lived like this. And all of a sudden, the person has a stroke. So there is another dimension that we need to add that there in that intersectional combined profile of a person’s background. How we can for aphasia, is particularly interesting, because when you work with diverse populations, and that includes all of us. You know, because I need to highlight that sometimes people…my impression is, and I noticed this from the answers from my students, that when I asked about diversity, that they focused on minoritized populations. But in fact, all this diverse society in which we live is all of us. Diversity means all of us sharing this part, you know, sharing this world. So, this intersectionality applies to all of us, but when it comes to underrepresented groups that haven't been studied or researched, that's why I feel that it's very important to pay a lot of attention, because applying models that have been developed to work with monolingual, middle class Anglo background…it just doesn't work. You know, to apply this norm to somebody that has all of these different dimensions, it's just unfair to the person and it's something that people have to be aware of. Yeah.
Katie Strong: Yeah. And I think you know, as you're talking about that and thinking about the tenets of the Life Participation Approach, they really do support one another in thinking about people as individuals and supporting them in what their goals are and including their family. You're really thinking about this kind of energized in a way to help some clinicians who are maybe thinking, “Oh, I do, LPAA, but it's hard for me to do it in this way”. You probably are already on you road to doing this, but you really need, just need to be thinking about how, how the diversity umbrella, really, you know, impacts everybody as a clinician, as a person with a stroke, as a family member.
Jose Centeno: Yeah, and, you know, what is very interesting is that COVID was a time of transition. A lot of factors were highlighted, in terms of diversity, in terms of the infection rate and the mortality was higher in individuals from minoritized backgrounds. There were a lot of issues to look at there. But you know, what's very interesting in 2020 COVID was focusing our attention on taking care of each other, taking care of ourselves, taking care of our families. The LPAA approach turned 20 years old. And that made me think, because I was thinking of at that time of disability, and it made me think of intersectionality. And I just thought it would be very helpful for us to connect this concept of intersectionality to the LPAA, because these issues that we are experiencing right now are very related to the work we do as therapists to facilitate people with aphasia, social reconnection after a stroke and life reconfiguration. So, all of this thinking happened, motivated by COVID, because people were talking about intersectionality, all the people that were getting sick. And I just thought, wait a minute, this concept of intersectionality, LPAA turning 20 years old, let's connect those two, because my caregiver study is showing me that that intersectionality is needed in the work that we're doing with people in aphasia from underrepresented backgrounds.
Katie Strong: Yeah, I'm so glad that you shared that insight as to how you came to pulling the concepts together. And the paper is lovely, and I'll make sure that we put that in the link to the show notes as well, because I know that people will, if they haven't had the chance to take a look at it, will enjoy reading it.
Jose Centeno: And just let me add a bit more about that. Aura Kagan’s paper on, I forgot where it was in [ASHA] Perspectives, or one of the journals where she talks about the LPAA turning 20 years old. [And I thought], “But wait a minute, here's the paper! Here's the paper, and that I can connect with intersectionality”. And at the same time, you know, I started reading more about your work and Jackie Hinckley’s work and all the discourse work and narrative work because that's what I was doing at the time. So that's how several projects have emerged from that paper that I can share later on.
Katie Strong: I love it. I love it. Yeah, hold on! The suspense! We are there, right?
Jose Centeno: This is turning into a coffee chat without coffee!
Katie Strong: As I was reading your work, something that stood out to me was this idea of building sustainable community relationships in both research and clinical work with minoritized populations. You've been really successful in doing this. I was hoping you could discuss your experiences in this relationship building, and you also talk about this idea of cultural brokers.
Jose Centeno: Wow! You know this is all connected. It's part of my evolution, my journey. Because as I started collecting data in the community from for my caregiver study, I realized that community engagement to do this type of qualitative work, but also to bring our students into the community. It's very important to do that work, because I you know this is something that I learned because I was pretty much functioning within an academic and research environment and writing about equity and social justice and all these different areas regarding aphasia, but not connecting real life situations with the community. For example, like having the students there and me as an academician taking that hat off and going into the community, to have lunch, to have coffee with people in the community, at Community Centers. So those ideas came up from starting to talk with the caregivers, because I felt like I needed to be there more. Leave the classroom. Leave the institution. Where I was in the community it's not easy. I'm not going to say that happened overnight, because going into any community, going into any social context, requires time. People don't open their doors automatically and right away. You know you have to be there frequently. Talk about yourself, share experiences. So be a friend, be a partner, be a collaborator, be all of these things together, and this gradually evolved to what I am doing right now, which is I started the one particular connection in the community with a community center.
How did I do that? Well, I went all over the place by myself. Health fairs, churches, community centers. People were friendly, but there wasn't something happening in terms of a connection. But one person returned my email and said, “we have a senior program here. Why don't we meet and talk?” So, I went over to talk with them, and since then, I have already created a course to bring the students there. I started by going there frequently for lunch, and I feel very comfortable. It is a community center that has programs for children and adults in the community. They go there for computer classes, for after school programs for the children. The adults go there for English lessons or activities and they have games and so on. And it's very focused on individuals from the community. And the community in Newark is very diverse. Very diverse.
So that led to this fantastic relationship and partnership with the community. In fact, I feel like I'm going home there because I have lunch with them. There's hugs and kissed. It’s like seeing friends that that you've known for a long time. But that happened gradually. Trust. Trust happens gradually, and it happens in any social context. So, I said to them, “Let’s start slowly. I'll bring the students first to an orientation so they get to know the center.” Then I had the opportunity to develop a course for summer. And I developed a course that involved activities in the community center and a lecture. Six weeks in the summer. So this project now that I call Brain Health a health program for older adults, is a multi-ethnic, multilingual program in which the students start by going to the center first in the spring, getting to know people there, going back there for six weeks in the summer, one morning a week, and taking a lecture related to what brain health is, and focusing that program on cognitive stimulation using reminiscence therapy. And it’s done multilingually. How did that happen? Thank God at the center there are people that speak Portuguese, Spanish and English. And those people were my interpreters. They work with the students. They all got guidelines. They got the theoretical content from the lectures, and we just finished the first season that I called it. That course they ran this July, August, and the students loved it, and the community members loved it! But it was a lot of work.
Katie Strong: Yeah, of course! What a beautiful experience for everybody, and also ideas for like, how those current students who will be soon to be clinicians, thinking about how they can engage with their communities.
Jose Centeno: Right! Thank you for highlighting that, because that's exactly how I focus the course. It wasn't a clinical course, it was a prevention course, okay? And part of our professional standards is prevention of communication disorders. So, we are there doing cognitive stimulation through reminiscence activities multilingually, so we didn't leave anybody behind. And luckily, we have people that spoke those languages there that could help us translate. And my dream now the next step is to turn that Brain Health course into another course that involves people with aphasia.
Katie Strong: Oh, lovely.
Jose Centeno: Yeah, so that is being planned as we speak.
Katie Strong: I love everything about this. I love it! I know you just finished the course but I hope you have plans to write it up so that others can learn from your expertise.
Jose Centeno: Yeah, I'm already thinking about that.
Katie Strong: I don't want to put more work on you…
Jose Centeno: It's already in my attention. I might knock on your door too. We're gonna talk about that later.
Katie Strong: Let’s get into the work about your caregivers and the work that you did. Why don't you tell us what that was all about.
Jose Centeno: Well, it's a study that focuses on my interest in finding out and this came from the assessment work that I did earlier when I asked clinicians working in healthcare what their areas of need were. But after meeting Pamela Rothpletz-Puglia at Rutgers, I thought, “Wait a minute, I would like to find out, from the caregivers perspective, what the challenges are, what they need, what's good, what's working, and what's not working.” And later on hopefully, with some money, some grant, I can involve people with aphasia to also ask them for their needs. So, I started with the caregivers to find out in terms of the intersectionality of social determinants of health, where the challenges were in terms of living with somebody with aphasia from a Latinx background, Latino Latina, Latinx, whatever categories or labels people use these days. So, I wanted to see what this intersectionality of social determinants of health at the individual level. Living with the person at home, what happens? You know, this person, there is a disability there, but there are other things going on at home that the literature sites as being gender, religion, and all these different things happening. But from the perspective of the caregivers. And also I wanted to find out when the person goes into the community, what happens when the person with aphasia goes into the community when the person tries to go to the post office or the bank or buy groceries, what happens? Or when the person is socializing with other members of the family and goes out to family gatherings? And also, what happens at the medical appointment, the higher level of social determinants in terms of health care? I wanted to find out individual, community and health care. The questions that I asked during these interviews were; what are the challenges?, what's good?, what's working?, what's not working?, at home?, in the community?, and when you go with your spouse or your grandfather or whoever that has a stroke into the medical setting?, and that's what the interviews were about.
I learned so much, and I learned the technique from reading your literature and reading Aura Kagen’s literature and other people, Jackie Hindley literature, and also Pamela's help to how to conduct those interviews, because it's a skill that you have to learn. It happens gradually. Pamela mentored me, and I learned so much from the caregivers that opened all these areas of work to go into the community, to engage community and sustainable relationships and bring the students into the community.
I learned so much and some of the things that were raised that I am already writing the pilot data up. Hopefully that paper will be out next year. All these issues such as gender shifting, I would say gender issues, because whether is the wife or the mother that had a stroke or the father that had the stroke. Their life roles before the stroke get shifted around because person has to take over, and how the children react to that. I learned so much in terms of gender, but also in terms of how people use their religions for support and resilience. Family support. I learned about the impact of not knowing the language, and the impact of not having interpreters, and the impact of not having literature in the language to understand what aphasia is or to understand what happens after stroke in general to somebody.
And something also that was very important. There are different factors that emerge from the data is the role of language brokers, young people in college that have to put their lives on hold when mom or dad have a stroke and those two parents don't speak English well in such a way that they can manage a health care appointment. So, this college student has to give up their life or some time, to take care of mom or dad at home, because they have to go to appointments. They have to go into the community, and I had two young people, college age, talk to me about that, and that had such an impact on me, because I wasn't aware of it at all. I was aware of other issues, but not the impact on us language brokers. And in terms of cultural brokers, it is these young people, or somebody that is fluent in the language can be language brokers and cultural brokers at the same time, because in the Latinx community, the family is, is everything. It's not very different from a lot of other cultures, but telling somebody when, when somebody goes into a hospital and telling family members, or whoever was there from the family to leave the room, creates a lot of stress.
I had somebody tell me that they couldn't understand her husband when he was by himself in the appointment, and she was asked to step out, and he got frustrated. He couldn't talk. So that tension, the way that the person explained that to me is something that we regularly don't know unless we actually explore that through this type of interview. So anyway, this this kind of work has opened up so many different factors to look at to create this environment, clinical environment, with all professions, social work, psychology and whoever else we need to promote the best care for patient-centered care that we can.
Katie Strong: Yeah. It's beautiful work. And if I remember correctly, during the
interviews, you were using some personal narratives or stories to be able to learn from the care partners. And I know you know, stories are certainly something you and I share a passion about. And I was just wondering if you could talk with our listeners about how stories from people with aphasia or their care partners families can help us better understand and serve diverse communities.
Jose Centeno: You know, the factors that I just went through, they are areas that we need to pay attention to that usually we don't know. Because very often, the information that we collect during the clinical intake do not consider those areas. We never talk about family dynamics. How did the stroke impact family dynamics? How does aphasia impact family dynamics? Those types of questions are important, and I'll tell you why that's important. Because when the person comes to the session with us, sometimes the language might not be the focus. They are so stressed because they cannot connect with their children as before, as prior to the stroke. In their minds, there is a there are distracted when they come into the session, because they might not want to focus on that vocabulary or sentence or picture. They want to talk about what's going on at home.
Katie Strong: Something real.
Jose Centeno: And taking some time to listen to the person to find out, “Okay, how was your day? How what's going on at home prior?” So I started thinking brainstorming, because I haven't gotten to that stage yet. Is how we can create, using this data, some kind of clinical context where there is like an ice breaker before the therapies, to find out how the person was, what happened in the last three days, before coming back to the session and then going into that and attempting to go into those issues. You know, home, the community. Because something else that I forgot to mention when I was going through the factors that were highlighted during the interviews, is the lack of awareness about aphasia in the community. And the expectations that several caregivers highlighted, the fact that people expected that problem that the difficulty with language to be something that was temporary.
Katie Strong: Yeah, not a chronic health condition.
Jose Centeno: Exactly. And, in fact, the caregivers have turned into educators, who when they go into community based on their own research, googling what aphasia is and how people in aphasia, what the struggles are. They had started educating the community and their family members, because the same thing that happens in the community can happen within the family network that are not living with this person on a day-to-day basis. So, yeah. All of this information that that you know, that has made me think on how clinically we can apply it to and also something how we can focus intervention, using the LPAA in a way that respects, that pays attention to all of these variables, or whatever variables we can or the most variables. Because we're not perfect, and there is always something missing in the intervention context, because there is so much that we have to include into it, but pay attention to the psychosocial context, based on the culture, based on the limitations, based on their life, on the disruption in the family dynamics.
Katie Strong: Yeah, yeah. It's a lot to think about.
Jose Centeno: Yeah. It's not easy. But I, you know. I think that you know these data that I collected made me think more in terms of our work, how we can go from focusing the language to being a little more psychosocially or involved. It's a skill that is not taught in these programs. My impression is that programs focus on the intervention that is very language based, and doing all this very formal intervention. It's not a formula, it's a protocol that is sometimes can be very rigid, but we have to pay attention to the fact that there are behavioral issues here that need to be addressed in order to facilitate progress.
Katie Strong: Yeah, and it just seems like it's such more. Thinking about how aphasia doesn't just impact the person who has it. And, you know, really bringing in the family into this. Okay, well, we talked about your amazing new class, but you just talked a little bit about, you know, training the new workforce. Could you highlight a few ideas about what you think, if we're training socially responsive professionals to go out and be into the workforce. I know we're coming near the end of our time together. We could probably spend a whole hour talking about this. What are some things that you might like to plant in the ears of students or clinicians or educators that are listening to the podcast?
Jose Centeno: You know this is something Katie that was part of my evolution, my growth as a clinical researcher. I thought that creating a program, and Rutgers gave us that opportunity, to be able to create a program in such a way that everybody's included in the curriculum. We created a program in which the coursework and the clinical experiences. And this happened because we started developing this room from scratch. It's not like we arrived and there was a program in place which is more difficult. I mean creating a program when you have the faculty together and you can brainstorm as to based on professional standards and ASHA’s priorities and so on, how we can create a program, right? So, we started from scratch, and when I was hired as founding faculty, where the person that was the program director, we worked together, and we created the curriculum, clinically and education academically, in such a way that everybody, but everybody, was included from the first semester until the last semester. And I created a course that I teach based on the research that I've done that brings together public health intersectionality and applied to speech language pathology. So, this course that students take in the first semester, and in fact, I just gave the first lecture yesterday. We just started this semester year. So it sets the tone for the rest of the program because this course covers diversity across the board, applying it to children, adults and brings together public health, brings together linguistics, brings together sociology. All of that to understand how the intersectionality, all those different dimensions. So, the way that the I structured the course was theory, clinical principle and application theory, and then at the end we have case scenarios. So that's how I did it. And of course, you know, it was changing as the students gave me feedback and so on. But that, that is the first course, and then everybody else in their courses in acquired motor disorders, swallowing, aphasia, dementia. You know, all those courses, the adult courses I teach, but you know the people in child language and literacy. They cover diversity. Everybody covers diversity. So, in the area more relevant to our conversation here, aphasia and also dementia. In those courses, I cover social determinants of health. I expand on social determinants of health. I cover a vulnerability to stroke and dementia in underrepresented populations and so on. So going back to the question, creating a curriculum, I understand you know that not every program has the faculty or has the resources the community. But whatever we can do to acknowledge the fact that diversity is here to stay. Diversity is not going to go away. We've been diverse since the very beginning. You know, like, even if you look, if you look at any community anywhere, it's already diverse as it is. So, incorporating that content in the curriculum and try to make the connections clinically. Luckily, we were able to do that. We have a clinic director that is also focused on diversity, and we cover everything there, from gender issues, race, ethnicity, all of those, as much as we can. So, the curriculum and taking the students into the community as much as we can.
Katie Strong: Yeah, I love that. So, you're talking about front loading a course in the curriculum, where you're getting people thinking about these and then, it's supplemented and augmented in each of the courses that they're taking. But also, I'm hearing you say you can't just stay in a classroom and learn about this. You need to go out.
Jose Centeno: Exactly! It’s a lot. It didn't happen overnight. A lot of this was gradual, based on students feedback. And, you know, realizing that within ourselves, we within the course, when we were teaching it, oh, I need to change this, right, to move this around, whatever. But the next step I realized is, let's go into the community.
Katie Strong: Yeah, yeah. Well how lucky those students are at Rutgers.
Jose Centeno: Thank you.
Katie Strong: Well, we're nearing the end of our time together today. Jose and I just wanted, before we wrap up, I just wanted to ask you, “what, what excites you most about where aphasia research and care could go, or what do you think might need our most attention?”
Jose Centeno: That's a great question, because I thought of it quite a bit. But I'll focus it in terms of our diverse population, where the aphasia research should be. I think my impression is that there should be more attempts to connect the theoretical aspects of language with the psychosocial aspect. In other words, and this is how I teach my aphasia class. I focus the students on the continuum of care. The person comes in after stroke. We try to understand aphasia, but we aim to promoting life reconfiguration, life readaptation, going back into the community. So, here's the person with aphasia, and this is where we're heading to facilitating functioning, effective communication in the best way we can for this person, right? So, if these are all the different models that have been proposed regarding lexicon, vocabulary and sentence production and so on. How can we connect those therapeutic approaches in a way that they are functionally usable to bring this person back? Because there is a lot of literature that I enjoy reading, but how can we bring that and translate that to intervention, particularly with people that speak other languages. Which is very difficult because there isn't a lot of literature. But at least making an attempt to recruit the students from different backgrounds, ethnic backgrounds. And this, regardless of the backgrounds, there are students studying, interested in studying other cultures. And the curriculum exposes students to ways that we that there is some literature, there is a lot but there is some literature out there to explain vocabulary sentences in other languages post stroke in people with aphasia that, you know, we can use therapeutically. I mean, this is what's been created. So, let's look at this literature and be more open-minded. It's difficult. We don't speak every language in the world, but at least try to connect through the students that speak those languages in class, or languages departments that we have on campus, how those projects can be worked on. I'm just trying to be ambitious and creative here, because there's got to be a way that we should connect those theoretical models that are pretty much English focused intervention paradigms that will facilitate social function/
Katie Strong: It's a lot a lot of work, a lot of work to be done, a lot of a lot of projects and PhD students and all of that. Amazing.
Jose Centeno: I think it's as you said, a monumental amount of work, but, but I think that there should be attempts, of course, to include some of that content in class, to encourage students attention to the fact that there is a lot of literature in aphasia that is based on English speakers, that is based on models, on monolingual middle class…whoever shows up for the research project, the participants. But those are the participants. Now, I mean those that data is not applicable to the people [who you may be treating]. So, it's a challenge, but it's something to be aware of. This is a challenge to me that, and some people have highlighted that in the aphasia literature, the fact that we need more diversity in terms of let's study other languages and let's study intervention in other populations that don't speak English.
Katie Strong: Absolutely. Well, lots of amazing food for thought, and this has been such a beautiful conversation. I so appreciate you being here today, Jose. Thank you very, very much.
Jose Centeno: Thank you, Katie. I appreciate the invitation and I hope the future is bright for this type of research and clinical work and thank you so much for this time to talk about my work.
Resources
Centeno, J. G., (2024). A call for transformative intersectional LPAA intervention for equity and social justice in ethnosocially diverse post-stroke aphasia services. Seminars in Speech and Language, 45(01): 071-083. https://doi.org/10.1055/s-0043-1777131
Centeno, J. G., & Harris, J. L. (2021). Implications of United States service evidence for growing multiethnic adult neurorehabilitation caseloads worldwide. Canadian Journal of Speech-Language Pathology and Audiology, 45(2), 77-97.
Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Aphasia management in growing multiethnic populations. Aphasiology, 34(11), 1314-1318. https://doi.org/10.1080/02687038.2020.1781420
Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Epilogue: harnessing the experimental and clinical resources to address service imperatives in multiethnic aphasia caseloads. Aphasiology, 34(11), 1451–1455. http://dx.doi.org/10.1080/02687038.2020.1781421
Centeno, J. G., Obler, L. K., Collins, L., Wallace, G., Fleming, V. B., & Guendouzi, J. (2023). Focusing our attention on socially-responsive professional education to serve ethnogeriatric populations with neurogenic communication disorders in the United States. American Journal of Speech-Language Pathology, 32(4), 1782–1792. https://doi.org/10.1044/2023_AJSLP-22-00325
Kagan, A. (2020). The life participation approach to aphasia: A 20-year milestone. Perspectives of the ASHA Special Interest Groups, 5(2), 370. https://doi.org/10.1044/2020_PERSP-20-00017
Vespa, J., Medina, L., & Armstrong, D. M. (2020). Demographic turning points for the United States: population projections for 2020 to 2060. Current Population Reports, P25-1144.
https://www.census.gov/library/publications/2020/demo/p25-1144.html
