Full Transcript of Interview with Ms. Harriet Yepa-Waquie and Dr. Nina Wallerstein

Dakota Cintron (DC): The first questions I have are really geared towards understanding your history working in the field of Community-Based Participatory Research (CBPR). As I reviewed the literature, I kept seeing your name come up and I saw that you've been working in this field for a long time. So, I just wanted to know, when did you start working on CBPR?

Nina Wallerstein (NW): I use the term CBPR because I come out of public health; and “community-based” was key from the Centers for Disease Control and Prevention (CDC) and “participatory research” was key as a strategy from the Global South in the seventies, when activist academics began to work with communities towards social justice goals. We basically extended Kurt Lewin’s earlier definition of action research, as learning from cycles of reflection and action.

Yet, CBPR is all about action. I'm deeply embedded in CBPR, though I also use community-engaged research. But I've only done CBPR, so the answer to your question is when did I start. I started as an adult educator working with Paulo Freire’s ideas in my teaching of English as a Second Language during college.

Then, I lived for a year in Brazil after college. So, Paulo Freire’s methodology, philosophy, the ideology has been part of my entire life, really, since age 19. When I became an academic and researcher, I stayed very connected to the idea of dialogue and community-driven solutions, and CBPR just was inevitable. The field was emerging at the same time that I was emerging in it.

I feel like it was part of the way I approach inquiry and approach learning and approach knowledge-sharing. As I created and worked with interventions, I became very embedded in working with communities in New Mexico. And, of course, if you're working with tribal communities, they're sovereign nations. And the participatory approach is almost a given, that the research has to emerge from the community, has to be approved by the community, and has to be approved by leadership from the community. Then there are agreements around data that state ownership of data goes back to the community.

My early research was in tribal settings. And so it fit with my approach to be based in community dialogue and community priorities and community knowledge creation. From my adult education background, it just fit. So I didn't ever consider any other research direction. I'm a qualitative researcher, but I've really worked for the majority of my professional research life in mixed-methods teams. I've led mixed methods teams and I've worked with them. But CBPR for me is just how I do the research, how I approach working with communities, and it emerged really from my Freirian adult education perspective, I'd say.

DC: I think it's really fascinating about that tie to the tribal communities and the sovereign nations and the way that working with them works. I guess you have to go through the community and establish some kind of common ground, say this is what we're going to decide together, do you agree with it? And get their input and support the whole way.

NW: We've written different articles just around our tribal research together, and we only write with our tribal colleagues, with our partners. We don't ever write for publication just as academics.

And I've worked with a Native team at the university - staff, students, faculty. I'm a white outsider working in tribal communities. So, it's been important to me to have teams that really are from the community as scholars. And then our tribal partners are also co-researchers. But that's interesting. We talk about community stewardship in some of our Engage for Equity work. And that comes out of the tribal work, the importance of cultural and community stewardship and benefit, and reporting data and findings back to the community. This approach does come from recognition of tribal sovereignty. Our national NIH-funded study, Engage for Equity, you might not know, has had multiple sources of funding, and one of them was an NIH-initiative, NARCH (Native American Research Centers for Health), where funding was directed to tribes or tribal entities, who then partnered with Universities. My colleague Bonnie Duran and I partnered with Sarah Kastelic, who directed at the time, the National Congress of American Indians Policy Research Center. So, Engage for Equity did emerge from grounding in indigenous rights. It may not be as explicit.

Harriet and I have been involved in an intervention for quite a number of funding cycles together called the Hemish of Walatowa Family Circle Project or the Family Listening Project in two other tribes. And we're now in a new dissemination and implementation grant so that our long-time tribal partners are the experts and they're providing coaching and consultation to the newer tribal communities on how to implement the program.

But we did do a, not a randomized controlled trial, but a quasi-experimental design intervention, with intervention kids and families and comparison kids and families, to test the effectiveness of the program, aggregating data from our three tribal communities. And increasingly Native research, Indigenous research, is using traditional control methodologies to look at success of an intervention versus nonsuccess. There's been some major National Institutes of Health (NIH) funding behind that.

So CBPR also has been moving in that direction. I'm not actually a complete believer in this because I believe the learnings from complexly looking at a community and the culture of that community are equally important in understanding impact in the community. So I don't subscribe to just randomized controlled trials or quasi-experimental designs to assess impact. I have a more of a both/and approach. But we have done this with our Family Circle and Family Listening Programs.

HYW: To respond to what Nina said and I was going to say that I think that the reason why CBPR in our community was so successful is because the answers she gave. They empowered us to be able to share a lot of things that we wanted to offer for this type of research. She put us in the front driver's seat and she gave us and the process gave us a lot of empowerment that the answers are within our community. You know what I mean?

DC: Yes, I think coming from studying quantitative methodology, this conversation around causal inference has been really fascinating to me. As I learn more about community engagement and hearing you talk about community stewardship, I think that these ideas are really important for figuring out what it is that we want to measure and what it is that we want to find out.

Oftentimes that's done by the researcher themselves and not with the group or community. And even establishing the benchmark of like an RCT as a gold standard, that's not really defined within the community. And so, are we moving the needle on what academics want versus are we moving the needle on what the community wants

HYW: Right. Right.

DC: I think that that sounds like that's the way you all are thinking and that community stewardship could be really good. Before you hopped on Harriet, Nina was telling me about how a lot of principles around community stewardship came out of the Indigenous culture. Is that correct, Nina?

NW: Well it came out of my connection, as in becoming partners with a number of tribal communities and colleagues and friends within communities. So I learned a lot, but had to, of course, abide by tribal leadership and that the decision-making comes from tribal governance and sovereignty.

That was a great learning for me, but also the importance of official Tribal Institutional Review Boards (IRBs) across the country that are growing. Jemez doesn't have its own IRB, but its tribal council and governor serve as an approval body. The official Navajo Nation [Institutional Review Board (IRB)], which was the first Native IRB in the country, has a required section where you have to write how you're going to benefit the community. The IRB cannot be just individual cost-benefit or that I'm not going to hurt a person who participates as a subject, as a participant in the trial. You have to answer, ‘How are you going to provide education back to the community? How are you going to provide technical assistance back to the community? How are you going to provide the data and findings back to the community?’ Otherwise, the Navajo Nation doesn't even let you in the door. So, it's really different from academic IRBs. This is what stewardship is. It has to benefit the community.

Tribes can demand community benefit because they're sovereign nations, and other communities don't have that power. They could and should. And there are growing numbers of community ethics committees or IRBs. Of course, tribes have a diversity of capacity around research, too. Some tribes have more or less, but they're still sovereign nations.

DC: That's a really, really fascinating insight. How have you seen the use of CBPR change over time? And when did you really start to see the concept of CBPR really take hold in academia? In the research literature?

NW: Historically, action-research has been around from the forties in certain fields. Kurt Lewin wrote about the idea of collaborative learning and change through action-reflection cycles, as a methodology to grow and learn and co-learn.

In the seventies, in South America and Africa and Asia, participatory research took hold in a much more political activist, community driven, social movement context. We took it on in the nineties, I guess, in the US. The principles that Barbara Israel and her colleagues wrote in 1998 is what we all talk about in our academic literature. Acceptance of CBPR has been growing, though it started in the fringe and the margins, but it's been growing. The first National Institute of Health that funded CBPR was the National Institute of Environmental Health Sciences talking about environmental justice.

It's really important that the first National Institute of Health funding was around justice and that's a big difference. But it's been up and down. The National Institute of Minority Health and Health Disparities has provided much support. But other NIH institutes as well, the CDC was always supportive of participatory approaches to planning, to evaluation, to research.

So I think it's grown since the nineties. Harriet and I had our first grant together in 1999, the Community Voices Grant, which was a CDC funded grant that we did in a participatory way. It wasn't named a participatory research study, but we did it in a participatory way. So we were learning as we went.

But the whole new funding mechanisms that affected this grant that we had, Harriet, with Ramah Navajo and Mescalero Apache came out of this Native-oriented approach by NIH to support rigorous research using NIH academic, gold-standard approaches and that is called the IRINAH network, Intervention Research in Native American Health.

It's an NIH initiative funded by multiple institutes. Our effectiveness grant, Harriet, is part of that and our dissemination grant is part of that. IRINAH grew out of another native-oriented NIH-initiative, NARCH, Native American Research Centers for Health, that included a goal to support an increase of Native scholars. The team I work with has had funding from NARCH (Native American Research Centers for Health), an initiative at NIH with one of its goals to increase Native scholars. And in fact, in our team, my Navajo colleague Lorenda Belone started as a master's level research assistant. She's now faculty and leads our whole new grant effort because of NIH’s commitment to support Native scholars. Rebecca Rae, who also started as a research assistant with me, from Jicarilla Apache, is now a faculty member in my college.

And so that's been an approach. I think there's a growth of scholars of color in general, Black and Brown scholars of color involved in CBPR, (supported by prominent foundations as well, such as the W.K. Kellogg post-doctoral support).

NIH has helped the growth, but it's also hindered the growth because NIH has not seen the importance consistently of community engagement and community-driven research. It's been up and down funding from NIH. And even the Clinical Translational Science Awards/Grants have sometimes had community engagement as a requirement and sometimes not.

And so it's been a real mix. And a lot of us have just kept doing the work because we believe in it. I think it has helped that there's been a really solid group of people all over the country who have just believed in this work and want to keep it going. That's helped because they've also done RCTs and other approaches in a community participatory way, and recently, addressing structural racism directly through NIH-funding.

There have been some really important developments, but I think it's right now at its highest level. There has been much more recognition than in the past, as I've watched the fits and starts since the late nineties. And I think it's at a point now where there's an emerging science of CBPR and community engaged research.

DC: How long would you say that the recognition of CBPR, community engaged research, for equity has been around? Has that been there the entire time? I know that the stage of your project right now, it's called Engage for Equity, but I'm curious about how you’ve seen that transform over time, too.

NW: Well, I think those of us who've been doing this have thought about equity and power sharing as a cornerstone to the process. What does it mean to share power with the community? It means letting go of our own leadership, it means turning leadership over.

That's been a struggle because if I'm getting the grant, I have accountability to funders, but I still have to turn over the decision-making to my community partners. I think it's a tension. It's a struggle. It means really being purposeful. I don't know if you want to talk about power sharing, Harriet, a little bit. Then I can talk about Engage for Equity, as with this grant, I think CBPR is deeply embedded in justice and equity and power sharing.

HYW: Yes, I agree with that. I think the power sharing is important because if a community is feeling that they can have input, that they have a say-so in how research is done in the community they also let go.

Trust is a big thing. And this is where trust comes in, in the power sharing. I think we learned over time to trust UNM and Nina. She over time trusted us. So as time went on, through the work that we've done with the different types of research with them, that trust just became stronger.

The relationships became pretty stable. And I think that is what really drives us in Jemez - that we know Nina is looking out for us, and we know that she's not going to go off on her own. She always goes through us, asks permission. There is the respect between us all, the researchers and the helpers and the assistants and the community, as well as the Tribal Research Team (TRT). Our research team, our group of people involved in this whole process has also been pretty stable.

And so that helps as well. But even when we bring in new people, they’ve trusted us in the community to be able to jump in with us, to work with us. And then, in turn they trust the university, they trust Nina. That power sharing is important for us.

NW: Harriet, you're also making me think that we have identified that trust is a major, major issue between people. But you don't just get it by just saying you trust someone. It's really in the actions over time.

HYW: Right.

NW: And that having the tribal approval processes prove that we have to be accountable.

HYW: Right. And remember what you had said. I know we went through the tribal council or through the health board, and they told us, too, you can work with our people, do our research, but we want to know what you're going to leave for us. We want to know how you're going to help us. And I know you didn't lose that commitment. Or when you told them, yes, we will give back.

And then that's when the next portion happened. It took a couple of years to get the research and then the money. And that's when you came back and we said, “Okay,” and that's when the Family Circle curriculum, and the substance abuse prevention program, started. To me, that's a commitment on your part, that's not going back on your word, and that even made this trust stronger.

And I'm like, “Wow, these guys really are here to help us because the community has identified alcoholism as an issue.” And in order to prevent that substance abuse with our young kids, here's something that we can implement.

And that was, to me personally, that was like for me a sign that they really want to help us. They want to help our community. It was important for me.

NW: But Harriet, you also mentioned an acronym, TRT. We used to call our community partners community advisory committee members. And now we've changed the name to Tribal Research Teams, they are researchers with us as partners. As co-researchers we make decisions together along the way. So, I think language matters. That's from Paulo Freire, language matters. How you use language, how you respect the knowledge that comes from different parties.

DC: Yes, when I read about Paulo Freire’s framework, it's really great how there's this exchange of expertise and cycles of learning around that. And it sounds like that may go a long way toward helping establish trust and just making everyone in the group feel like they have power, that they're part of this process.

How did that come about? How did your work with Paulo Freire come about and sort of merge into your work in community engagement? I mean, I'm sure it's been there the whole time, as you said.

NW: Well, on a very personal note, I dropped out of college and I joined an adult education group that was working with Paulo Freire's ideas and started developing a curriculum in English as a second language for mostly Latino folks in San Jose, California.

And I began to realize that that dialogue is really important. Dialogue matters. Dialogue brings people together, different knowledges together. And how do you create structured ways for dialogue to be meaningful and to lead to action? Because Freire is all about action. It isn't just having nice, comfortable, wonderful conversations or exchanges. It's for a purpose of action.

And that's where the equity comes in. It's for the purpose of improving health equity, reducing disparities, taking an issue like alcoholism in a community and saying, “Yeah, let's do something about it.” So, the dialogue is for a purpose. The tribal Family Circle/Family Listening program brings fourth and fifth graders, parents, and elders together in a dinner-based program, with a curriculum to strengthen families and to strengthen kids’ connections to their history and cultural identities. Harriet is one of the facilitators, in her tribe, the program is given in Towa, given in their language. It aligns with their culture and identities for these kids, so that they can develop this protective factor around themselves…. Because they want to be healthy and connected to the well-being of their community and their culture and language. As a white outsider, I can bring in prevention strategies, but they are the experts in their own knowledge of what’s important to community well-being. I can't say what that is. So, it’s been a continual process of co-learning.

I have to depend on the knowledge of the community members who will often just go into discussing the issues for themselves in their own language, because it has to be done that way and then they will translate back to me what they want to translate back, which is fine.

If they have to go into their own language to figure out how they want to lead this particular curriculum session, then that's really key. You know, it's not for me to say. I don't even know. I mean, I wouldn't even know what's the right way. This has been a really mutual exchange. We brought in some prevention information, etc., etc. Harriet herself has worked in prevention, she's a social worker by training. There are people from the TRT who are in education and health and seniors center approaches. So, it's been a development of multi-sector, multi-people, partnerships, bringing in elders to share their learnings. There's a lot of elders sharing their learnings in this program, so that's part of it.

DC: I know we should keep moving forward and I would just like to ask really quickly about the Paulo Freire framework and how that works with CBPR. Is there any particular thing that you've written that you think is a really good piece on that? Any piece you think would be good for our readers and people who are thinking about this, because I've definitely seen it in some of your works before.

NW: No, I wrote an early, early piece called Powerlessness and Empowerment and Health Promotion, and that has some deliberate connection to Paulo Freire. We're right now writing a piece on empowerment and CBPR and bringing in a Freirian case study.

So, it just feels like it's the way we think as a team about the importance of dialogue. It hasn't been as much this is what Freire offers or this is what CBPR offers, it has been about pulling it all together. I haven't written that, which might be something that I need to do and have some case studies of different vignettes from different communities, such as something from Jemez and other partners, and how we do dialogue in Family Circle.

The importance of dialogue and the importance of dialogue for action is really deep - one of the deepest methodologies of Paulo Freire. We do it differently, but we do it. Engage for Equity as a project was a wholly different funded project. It wasn't local New Mexico but it was funded to look at community based participatory research across the country.

And it started when I got funding in 2006 to develop our whole conceptual model, which has a Freirian element. When I teach CBPR, I integrate the teaching of Freire with the teaching of CBPR. But it's fascinating, Dakota, I haven't written that, but I think it's a good charge. I'll take that charge up and see if I can also provide a couple of other writings that maybe integrate some of this.

Engage for Equity started in 2006. Bonnie Duran, a Native scholar and long-time colleague, and I actually got funding to look at what CBPR is. We received pilot funding from the National Institute of Minority Health and Health Disparities to look at what is the science of CBPR. What are the processes and what practices are most beneficial for outcomes towards equity?

So we created our comprehensive CBPR model, which we still use, and it's gone through multiple iterations. I don't know if you have the latest one, but the 2020 Health Education and Behavior article on our design and process of the Engage for Equity study does have some discussion of Freire. But not as much as there probably could be. Our initial pilot funding provided the support to do a literature review to create the CBPR model to develop our thought processes. We then got funding from a Native-oriented initiative at NIH called the Native American Research Centers for Health (NARCH) funding. We also had NARCH money for the Family Circle/Family Listening Program with several tribes. NARCH funding was initiated at NIH to enhance research in Indian country, by supporting a pipeline of Native researchers and by focusing on disparities. Only tribes or tribal entities can be Principal Investigators, and they then contract with universities.

So the NARCH money for Family Circle came through an inter-tribal organization, the Albuquerque Area Indian Health Board, to work with Ramah Navajo and Jemez Pueblo. The NARCH money that we received for Engage for Equity came through the National Congress of American Indians Policy Research Center, the premier tribal-leader led governance organization in the country. The NCAI Policy Research Center wanted to look at the role of tribal sovereignty in research. Does tribal sovereignty help produce better outcomes versus communities with more diffuse leadership? That's what they were interested in.

And we were interested in, what is the variability of CBPR or community engaged research in the country and could we identify best or promising practices in community engagement or CBPR? So we developed two survey tools and we actually first surveyed 200 federally-funded partnerships around the country. We actually did survey our team, our Family Listening/Family Circle team in Jemez, Ramah Navajo, and Mescalero Apache as part of the national Engage for Equity sample.

And then our tribal partners were invited to join our Engage for Equity workshops as well. So, remember the workshops that we had on the River of Life and using the CBPR model, Harriet? You were part of that. So we've been through multiple iterations. We ultimately surveyed over 400 federally-funded partnerships in the country on metrics and constructs of practices and outcomes that we saw from the literature, from our own experience, from focus groups and other community consultations, and we now have psychometrically-tested instruments and identified promising/best practices associated with outcomes. Our guide for Promising Practices can be found on our website (https://engageforequity.org) and can be downloaded directly (click here).

The survey instruments have a section with scales on trust, there's a section on participatory decision-making, there's a section on listening and dialogue, there's a section on respect, there's a section on formal agreements. We've produced a structural equation model which elaborates pathways to equity impacts. We’ve identified a major driver of change that we've codified and we're calling collective empowerment. This parallels thinking from Paulo Freire, so collective empowerment statistically brings together four constructs, The first is that the research and partnership practices fit with the community knowledge, history and values, which is core, basic, right?

The second is that everybody on the team believes that they have influence, that what they say matters, and that it’s not just academics saying, “Oh yeah, I believe the community matters” and the community thinks, “Oh my God, they never listen to me.” Influence is key, that it's shared influence. The third is that people align with the set of values and principles together, that they share a set of principles.

And the fourth construct is that you engage in collective reflection together. What are you learning together? Are you moving in the direction you want to learn? Are you moving towards equity? So these four constructs hold together statistically into a higher order construct of what we have called collective empowerment, and that's a driver in the pathway to greater outcomes. So we have a new SEM paper coming out with our new findings. We initially did surveys of 200 partnerships and their teams, 200 partnerships with 450 people total. We were seeking responses from two to four partners per partnership. Our first SEM model showed collective empowerment as a driver for two pathways: relationships and stewardship structures (access the paper).

But then, in the next grant, we surveyed another 179 federally-funded partnerships and then 36 pilot groups. Our Family Circle/Family Listening Program was part of this second cycle with 16 individuals who responded to the survey. Our new paper shows a revised structural equation model that validates that collective empowerment drives both relational and structural pathways. And if you engage in these practices of collective empowerment, then you're going to see greater equity outcomes.

We've been working really hard to improve the science of CBPR and directly linking some of these power sharing practices to actual equity outcomes. At the University of New Mexico Center for Participatory Research we've been working really hard to improve the science of CBPR, including identifying promising partnering practices, such as power-sharing practices, that are associated with equity and other outcomes. This is from our NIH-funded Engage for Equity study since 2006. And we think it matters. Our goal now, where we see the field now, is that we appreciate the value of long-term academic-community partnerships; they can be really productive and successful - just like with Harriet and the Pueblo Jemez. We have also worked with two other tribal communities, with Ramah Navajo for almost as long, and the partnership with the Mescalero Apache is a little more recent. We're now moving to three other tribal communities. Those are long-term partnerships.

However, it's really a challenge to do this alone and those of us in the academy are often still marginalized. We don't get institutional support. I have a center for participatory research that receives zero institutional dollars. The only way we're funded is by us writing the grants. That’s the only way we're funded, which is wrong. We should have institutional support to be able to maintain long-term partnerships. Individual researchers do it anyway, even without funding, but we do it. So increasingly, there’s a recognition of institutional barriers. Where CBPR and community-engaged research has to go is we have to challenge the academy, we have to challenge institutions to provide the needed support.

We have a new PCORI grant that hasn't yet been written about, to look at three institutions, and that's Fred Hutchinson and the University of Washington Cancer Alliance, Stanford University Medical School and their cancer institute, and Morehouse Medical School, which is an HBCU. So these are really different places. We're trying to look at facilitators and barriers at the institutional level that promote or hinder the work of community engaged researchers, particularly for scholars of color who are burdened by what is called the minority tax because they have a lot of other demands on them in the academy.

While I'm a perfectly good human being, and I can provide a lot of support, I don't know the experience of being Native or growing up in the reservation or even as an urban Indian. I don't know that experience. Additionally, all hiring committees have to have a person of color on them. There are too few minority faculty in academia, so they're on lots of hiring committees. This service takes away from their research. And BIPOC students also want to work with BIPOC scholars, and then get support from them.

So, we're looking at institutions right now and trying to explore how institutions need to change to support equity-based community-engaged/CBPR research over time.

I'm still actively involved in community work and community-based research. I'm still doing the work with the tribes. So I'm doing research both at the state and national level. At the state level, we’re now working with six Southwest tribal communities in our new grant. I'm also working with the health councils around the state who are implementing some of our CBPR and Engage for Equity tools.

If you're not working on the ground, you're not learning in my experience. If I'm just kind of working theoretically, or within academia, I'm not continuing my own learning. So I have to keep working with my colleagues and partners. The long-term work with Jemez Pueblo is both really heartfelt and head-learning. Where CBPR has to go, however, on a national level, is we have to challenge the academy, we have to challenge institutions to provide the needed support.

We have to do it. That's where we're doing our research and that's the next grant. We're doing an exploratory assessment now as an engagement award with institutions and what's working and what's not. Next, we want to do a step wedge design grant to implement and test our Engage for Equity tools with multiple institutions to target their policies, practices, and norms so that the institution as a whole can better support this work.

DC: I think it's a really great focus. That was definitely one of the things I recall hearing from Thomas LaVeist during an event that E4A co-hosted with Race Forward - that the universities are one of the largest institutions and employers in a community. So, we really need to start thinking about what role they can have to help achieve equity and do some of this work on the ground. It's really disheartening to hear that you've never received funding from your institution despite all the great work that you've done. I think it really shines a spotlight on that kind of tension.

It would be nice to shift a little bit now to hear about some of the experiences that you've had working with Nina, Harriet. Can you talk a little bit about why CBPR is important to you and what your role is as a partner in these CBPR projects? Can you also share what changes, if any, CBPR has made for you and your community?

HYW: First of all, CBPR is important to me because it's giving us a voice. It's empowered us, which is what we've been able to get out of this as a community. When we do our lessons, our curriculum, for the Family Circle, there's a session there where we talk about community values. It really brings the values and what's important for the participants, as community members, to the forefront. It allows us to think about what's really valuable to each of us as individuals and as part of the community. There's also a session where we talk about community concerns and issues that the community wants to see changed to improve the community. With the whole thing there are a lot of people who feel safe enough to voice their concerns about what they see in the community and what they would like to see improved.

In the end, through that whole process, I think there might be another session where we would talk about how we can go about improving things. So we even go through a process to decide, who do we go to in the community to make these changes? Who do we go to that will listen to us?

A lot of things that the community people voice and bring up are things that they've probably kept within themselves, their family, or whatever. They just never felt that it's okay to just say these things and this really empowers them as individuals, as families, as communities. Showing them that, “Hey, I have a voice and somebody can listen to me.” There are lots of good ideas that come from these groups and the people feel respected, they feel listened to.

And so I think that, in and of itself, has helped families and community members to make indirect changes, maybe not even knowing some changes within the community. Even our young kids are listened to and feel empowered, that they can make a difference in their own community.

So I think it's really had a positive impact. The community has a voice. It's important for me too, because I’ve felt included and been given the respect and the opportunity to say I can make decisions of what my community needs and they will listen. UNM or the researchers will listen to us.

So that was important, and that's why I really believe in CBPR. I feel like, “oh, my God, this works.” As Nina was talking about earlier, the processes that we went through and we're still going through, everything that she's talking about, I just don't see any other way. I don’t see how someone can come into a community to do research without using CBPR if they’re going to have any kind of positive impact.

Our success is in really, really wanting to be there for the community. Because we know who we are. We know what we want. We know how we want to change things or improve things. It kind of feels funny when Nina tells us, “you all are the experts” and we look at each other, thinking “I'm not an expert.” It's not always about a degree. It's not always about credentials. Our experience and our knowledge make us experts. Sometimes it feels funny because, for me, anyway, I don’t always feel like an expert, but really I am because I live it. We are fluent speakers. We know the language. So, I guess I am an expert.

DC: I think everyone's voice really matters. So it definitely helps to empower folks to use theirs. What are some roles that you've held in the CBPR projects that you all have worked on together?

HYW: I first came into the picture as a participant in one of the focus groups. Then I worked in a community advisory capacity. We helped change or revise the curriculum that we're using, and then I've always been a community participant advisor. Then I became a tribal research team (TRT) member. Then eventually I became, and still am, a facilitator for the curriculum that we're implementing, the Family Circle Project. So that's how I've participated.

DC: That's great. Can you speak a bit about any tangible changes that you've seen in your community as a result of these CBPR-engaged efforts?

HYW: We've identified language and traditions as being important to us as a community. In recognition of that, we've been implementing the Family Circle sessions almost every year, until the pandemic, and we’re going to continue doing those whether we have funding or not. That's going to stay in our community.

We facilitators are committed to teaching our kids the language, teaching them our traditions and our culture and our history. Everything that we do in our 14-session curriculum is so important for us, for the kids, for the parents. Their feedback after the 14 sessions makes you emotional and it really cements why we do what we do. So that for sure is not going away.

We have something tangible, we're going to keep it. Jemez started a new school, a Jemez Immersion School. The curriculum and the new school kind of go hand in hand. They support each other. So I think that's what really is going to stay in our community.

DC: Those are really good insights. I’d also like to hear about any changes to health or any other outcomes.

HYW: I think that what these kids have learned has created a good foundation, a good connection to who they are, their culture, their family, that it's really helped them to stay grounded, to stay focused on who they are and what they want in life and how to be healthy. We've had quite a few participants who have graduated, who have gone to college, who've graduated college. I'm hoping that they've made good decisions.

NW: Let me just add to that. This project was funded by the National Institute of Drug Abuse (NIDA), to deal with alcoholism and other substance use disorders. But working with kids ages in fourth, fifth, and sixth grades, they aren’t really using. So you can't really see a drop in drinking because they're not doing it in the first place. We did assess depression and anxiety as risk factors for future substance abuse, and we saw that the program reduced depression and anxiety among the kids in a statistically significant way. We have also seen an increase in coping. We have these way too long pre- and post-tests and then a year out post-post test. Jemez has actually been one of the best in collecting the data and has managed not to have a high attrition rate on the post-post test, even, because they're very dedicated to getting this out. But we don't have the follow up that she's talking about, like who went to college and did they make healthy decisions?

We have follow-up to seventh or eighth grade, so that's still young, so for health outcomes, we should have follow-up questionnaires in high school. We just don't have the funding. We haven't had the funding to do that long-term follow up. But we have seen an increase in their connection to their own culture and language, which we think is a growth in protective factors.

So we have some data, but the real data of these kids growing up healthy and through college, we don't have the longitudinal follow up. That's what we had in a five-year NIH grant with cohorts every year. So, we need that year post-post questionnaire.

DC: Harriet, those changes that you felt were happening in the community, even though they weren't health outcomes, it felt like really tangible pieces of evidence that these things matter to your community and that it's really making a difference. Thank you both very much.

HYW: Thank you.

NW: Thank you.