INTRO
SARAH: This is At the Core of Care, a podcast where people share their stories about nurses and their creative efforts to better meet the health and healthcare needs of patients, families and communities.
I'm Sarah Hexem Hubbard with the Pennsylvania Action Coalition and Executive Director of the National Nurse-Led Care Consortium.
As part of our special training coverage and in recognition of November being National Diabetes Month, this episode is about Equitable Diabetes Prevention for Special and Vulnerable Populations, specifically Pacific Islanders. Our conversation will highlight the impact so far from the Pacific Islander Diabetes Prevention Program or PI-DPP.
Launched in twenty-seventeen, this program is breaking ground to provide specialized care for Pacific Islanders within the continental United States, Hawaii, the U.S. territories, and freely associated states.
My colleague Jillian Bird, Director of Training and Technical Assistance at the National Nurse-Led Care Consortium will be leading this conversation. Through a wide variety of ongoing programming, Jillian and her team help support providers working in community health centers throughout the United States.
MUSIC UP
JILLIAN: Thanks, Sarah. Joining me for this conversation by Zoom are Jen Lee and Cecilia Sigrah. Jen is based in Atlanta, Georgia and is the Deputy Director for the Association of Asian Pacific Community Health Organizations, or AAPCHO for short. And Cecilia is on the line with us from Kosray, an island in the Federated States in Micronesia where she is the Coordinator and Lifestyle Coach as well as the Operations Manager for the Kosray Community Health Center. And as we’ll hear, Cecilia’s organization has worked closely with Jen’s organization over the past five years as part of the rollout of the Pacific Islander Diabetes Prevention Program or PI-DPP.
Welcome Jen and Cecilia to At the Core of Care.
JEN: Thanks for having us.
CECILIA: Thank you very much.
JILLIAN: We're so glad you both could join us. And before we dive into the details, would love to hear what led you to the work you do now, Jen, would you lead us off?
JEN: I have been working in or on behalf of community health centers for about 22 years now. I started as a community health worker in one of the AAPCHO member centers of the association I'm a part of now. And that experience really informed a lot of my perspective on what it looks like to deliver kind of tailored community informed culturally in-language care, kind of the needs. We were focused on immigrants, refugees, and Asian Americans at that health center. So I kind of worked from the front line up to kind of more program directorship there. And that eventually, you know, led me to the association, APPCHO, where I'm at now, the Association of Asian Pacific Community Health Organizations, and came into our programs on a national scale, which really opened my eyes to just the diversity in our communities, geographically, let alone linguistically. And it really was, you know, as mentioned in 2017, where I had a chance to embark on this Pacific Islander Diabetes Prevention Program was a unique opportunity. And the community leaders approached our organization, looking for a chance to expand this program, not just in the U.S., but in the Pacific region and Hawaii. And we were lucky, I think, to take on that challenge of partnership. So um, that's kind of my entree really, literally, what we get to talk about today.
JILLIAN: And Cecilia, how did you arrive doing the work that you're doing now?
CECILIA: So my background is really in nutrition. And I've been working in the healthcare arena for like more than 15 years. And specifically working on the lifestyle disease programs, and involved with the program planning and implementation and just transition to the Korsay Community Health Center, where they were in the initial phase of rolling out the PI-DPP program.
JILLIAN: Thank you. For our listeners who may be unfamiliar with your organizations, can you each tell us a little bit about the mission and the communities you serve. Cecilia, we can start with you.
CECILIA: So, Kosray Community Health Center just got established back in 2015. And it has three community health centers that are serving the whole population of Kosray. And that's around 6600 people. And Korsay is one of the four states that make up the Federated States of Micronesia. And the mission of the Kosray Community Health Center is really to improve the health of the residents of Kosray by providing affordable access to comprehensive primary services.
JILLIAN: And Jen, can you tell us a little bit more about AAPCHO?
JEN: So AAPCHO or the Association of Asian Pacific Community Health Organizations is a national association. We were formed about 30 years ago really to create a national voice to advocate for the unique and diverse needs of Asian American Native Hawaiian and Pacific Islander communities and the providers that work on behalf of their needs. We're committed to advocacy, collaboration, and leadership to improve the health status of Asian Americans, Native Hawaiians and Pacific Islanders within the United States, its territories and freely associated states. We have about 34 Community Health Center members that serve about three quarters of the majority of Asian Americans, Native Hawaiians, and Pacific Islanders in the community health center program. So, close to a million patients.
JILLIAN: So let's dive in now to how the Pacific Islander Diabetes Prevention Program came to be in 2017. And now, in its fifth year, Jen, could you speak historically, what drove the need for this initiative to be so specifically tailored? And what was going on? Or not, I should say, in the diabetes space for Pacific Islanders, and what we know about the rates of diabetes in this population.
JEN: I will begin by saying, for the Pacific region, the U.S.-affiliated Pacific islands, diabetes was declared a state of emergency. And that has been the case for several years now. Meaning that, the rates in the region, I think upwards of and Cecilia can expand more, but upwards of 25 to 40% of populations per jurisdiction have or experienced diabetes. So that disparity has been too-long standing and I think a lot of the interventions, really, and the funding has prioritized, obviously, diabetes management, support services. And, really was a gap, I think, in looking at the lifestyle change program, or a prevention program that was funded, supported, had the evidence base, that could be, you know, introduced or expanded really, to, Pacific Islanders. So, you know, that's kind of, I think, the state of the region, and we found ourselves, you know, with sort of a waitlist of organizations wanting to participate and be a part of this expansion of funding to Pacific Islander populations. And it was hard, we have grown to have now 11 affiliate organizations that are delivering this program. Three of them are in the U.S., in Arkansas, Utah, one in Hawaii. And the other eight are in the U.S. affiliated Pacific islands. So like Cecilia, with us here today. And for us to start, I think obviously the curriculum is provided to us, the preventing curriculum in English. We're working with at least seven different language groups and knew that this program needed to be delivered in language to impact these communities and be more community-led. So that set us kind of on our journey from the beginning. We spent a lot of time building the foundation before we got started, because it wasn't provided to us. So yeah, I think there’s a real disparity in the region in terms of what prevention looks like, and just to understand that, I think, looking at the availability of specialty care to deal with diabetes, and folks with multiple chronic conditions is limited. And so, you know, many funds out in the jurisdictions are spent on supporting people, and I think that's a difficult list to get on. But to be transported off island to Hawaii or wherever there are more specialists to deal with their conditions. You just sort of see this turnstile of tertiary care. It really just speaks to I think the relevance of this funding to get this started for them. And now, they're obviously just driving it home.
JILLIAN: And Cecilia, we heard you mention that your community health center was selected as one of the partner organizations. Can you give us an idea of some of the obstacles that have been present on Kosray when it came to managing diabetes? Give us a sense about the life of the population there and the relevance of diabetes for folks living there?
CECILIA: So like Jen just mentioned a while ago back in 2012, the U.S. affiliated Pacific Island countries has already been declared that entities, where diabetes is one of them, was already declared as an emergency crisis. So I think some of our data would really reveal that we are in the midst of crisis. The prevalence rate of diabetes specific to Kosray is around 30%. And our adult population is 3,700 plus. That's 18 years and older, and 30% is with diabetes. And still another 35 % is diagnosed as having pre-diabetes. And I think for Kosraeans, the practice, they don't really come for healthcare. They don't really come for checkups. Back in our survey back in 2019, 59 % did not come for their annual checkups. And still another 30 plus percent, annual checkup is not something that is routine for them. And we see this as obstacles for our people. And I think one of the main thing behind this is there is drastic changes in lifestyle of Kosraeans. People are no longer living on another subsistence system where they're relying on local foods and fish. But they're changing to a more westernized way of living where there's the sedentary occupations. And they're moving into mostly imported foods or processed foods. We also have some survey results revealing that more than 95% of our adult population are not meeting their recommended intakes of fruits and vegetables. So I think these are some of the things that I can share to address that question.
JILLIAN: Absolutely, yeah, these lifestyle struggles are affecting populations around the United States as well. So it's very interesting to consider that specifically on Kosrae that this is also happening at such a huge impact that it's really nearly 60% of the population addressing this, somewhat preventative type of disease. So I'm thinking about the behavior changes that you just mentioned, addressing diet, addressing movement. And I'm wondering how you change people's minds about diabetes who may see such a prevalence and not feel particularly motivated to prevent or manage their lifestyle? It seems really challenging when such a large part of the population is diagnosed with diabetes or metabolic imbalances. So how do you recommend going about that? Or what have been some of the successes you've seen Cecilia, in your in your work so far?
CECILIA: It’s something that is very common when we're approaching our people, like trying to convince or motivate them to get into our diabetes prevention program. You know, some of them even like, directly stated that, oh, my family is diabetic. So I have strong ties, so I'm definitely going to be a case. So you know, one of the things that I see, that we’re very good in convincing or motivating them is to really share with them that studies has already proven that if you do something, you can prevent it. Like exercising or modification with diet patterns, and even like, losing at least five to seven percent of your weight. So, we try to motivate them that researchers have revealed that it works. So this kind of, I think, had a good catch with them. And the other thing is like, it's true, we try to admit to them that it's true that genetic factors play a very important role. But then it's also the environment. Like for some kids, they might also be at risk of getting diabetes, because they're learning the unhealthy practices from their parents or from their elderly. But then, you know, when you have control over those, it can be better than that. So I think these are the two main things that like, letting them know that research has proven that it works. So I think that's one strong thing. And the other thing is, although genetic factors plays a great role in there, but it's also the environmental factors that would also contribute. So I think this is really the basic simple things that we use to really try to get them in.
JILLIAN: I'm glad to hear that there's success there for you. And Jen, I'm curious about kind of zooming out, looking at how AAPCHO approached, making this PI-DPP program. And you mentioned earlier about having cultural sensitivity and situating a program like this with a competence and awareness of the different cultures that you're trying to administer to. Was there something sort of organizationally or systemically that AAPCHO considered when trying this out?
JEN: None of this would be possible for our organization without our close consultant and colleague, Dr. Nia Aitaoto. She has done work with the Pacific region for close to 30 years. And also has been a kind of ally for our organization and community leaders. So, I think working with leaders like Dr. Aitaoto really helped our association get a primer on how to approach this, what framework to use and what it was going to take for us to do this right. And with community, I think that sort of framework set us off on the right foot, and also bridged a lot of trust. I think it was for our association to, be prepared to earn that trust, working with communities closely on the ground, it takes time to build that. And I think community allies and subject matter experts like Dr. Aitaoto kind of helped us expedite that process. And we really were kind of learners in taking guidance. And we've advocated for this a lot throughout the course of the program was the opportunity for us to convene, to come together and learn in-person versus virtual. We started in 2017. And those meetings really were essential for us to plot and plan how we were going to do this, and what the capacity was of all the partners and helping us coordinate translation. So this program is very much the community's program. They've translated everything. They have tailored the curriculum to better reflect the Pacific context. I think what participants experience, has to reflect their experience to stay interested. And coaches like Cecilia, they do a great job of bridging that. But to have the tools in language and images that reflect foods that are in the Pacific region, or more akin to the Pacific Islander diet really make this more customized. And so, you know, we put a lot of time and effort into getting feedback from coaches like Cecilia with her nutrition background, you know, just changing some images. You know, making sure we had the translations done. That was a long process and getting those approved through CDC. But I think also, one of the big cornerstones of the work has been this dialogue with, all the organizations and what their challenges were and what they needed to do this well.
And so, you know, that includes, you know, our association, you know, for many folks, just the resources to print curriculum and have a tangible printed curriculum was not easy for a lot of our folks in the Pacific. So APPCHO anchored printing. We still do to this point just to make sure everyone has the supplies they need, and each participant has something in hand that really represents their time and effort in the program. And so, it's small things like that to prioritizing the coaches themselves, and the guidance we received, too, was just a lot of training. Doing this program has almost been like a workforce initiative. I think we've trained close to 100 lifestyle coaches through the course of this work and over time, building capacity from, just the data collected from these classes on physical activity and having patients with that and thinking of new creative ways that the coach is for many of the community. Like numeracy is a challenge, counting calories, is a newer concept. But yeah, that sort of collaboration really has helped us create and hopefully support an infrastructure that is sustainable over the long term.
JILLIAN: I can really hear the amount of investment AAPCHO is making in the communities and providing the support necessary to see these programs being rooted into the community and serving communities where they are. And I'm curious to hear from Cecilia now that we have five years in on the PI-DPP. What are some of the biggest changes you've seen in terms of the patients you care for? And can you share a little bit about what does it look like when the community is succeeding? And are you getting buy-in and more people interested to try out this intervention to help address the diabetes that they see in their communities?
CECILIA: What I would share is really the positive lifestyle changes at the individual level, and then the community level. So with the individuals, like our participants, it's really seeing like, weight loss from 5% all the way to 39%. It happens. And then the improvement in blood pressure readings. We have some participants that were being like advised by the doctors to work on their blood pressure, blood sugar. And there were a few that shared that for years, like they've been diagnosed as having pre-diabetes. But then once they came into the program, I think by which one of them was like, for three consecutive years, she was being diagnosed as having pre-diabetes. And then when she came into the program, and she lost around 30 plus percent of her initial weight, and when she went back, it was like normal. And then after that, she kept on going like every month, like for her to check her blood sugar. And then the clinics were advising her that it's within normal ranges. And she didn't go back next year, or within six months. But she kept going in there, because she was so happy with that. And we also got some folks that were, during their pregnancies, they were being advised on trying to be very cautious with their blood sugar. And so one of these ladies she has, like three pregnancies, she was advised to be very careful with her blood sugar. And she has really strong family history of diabetes. But then on her fourth pregnancy, she was with us not being pregnant. And then while she was going through the program, she got pregnant. And then she was really happy to share with me, you know, this is the first pregnancy that I wasn't told that my blood sugar is at those ranges where I have to be very careful. It went back to normal. That's what she was sharing and she was really happy with it. And I think the other thing is for those people having cholesterol, like more than 200 or even being advised by the their providers to be really careful. And when they came into our program, it was like exercise and looking after their diet are something normal for them. And I think one of these participants, these are some of the things that I was very impressed of and would like to share. So one of them was 60 plus year old male, and he was an athlete before he was a basketball player and he runs and he said that he cannot do it anymore. But after coming into the program, he tried little by little and then at the end he was running and playing basketball again. And then when he went back for his checkup, it was like cholesterol level was normal. Blood pressure was normal and blood sugar remains normal. So these are some of the things that I would say were really great with regards to the big changes at the individual level.
So for the community, you know, I have some consultants coming over from CDC and PIHOA. This is the Pacific Island Health Officials Association, and they were like telling me, how come there were a lot of people walking at the causeway or at this trail? So another point and before because they used to walk there or run there, and they were telling me that they don't see that. But after coming back within those times, they kind of observed that there's this change. And I was so happy with that, like, our participants are doing that. And then they involve their families, and even the people in the community. And one other thing that people used to say, that really makes me happy, or even the, the organization as a whole is like, they even asked like, was so and so in your program? They don't call it DPP, but they're like, calling our names after that program. And then the main thing I think is they're losing weight. They're practicing healthy things, physically active, and, very cautious of their eating. At the community level, I think we're being recognized. And then when we first started, we had around 100 plus participants, but during the course of the program, until year four or five, we had like 400 plus participants that were enrolled and went into the program. So I would say these are some of the very big changes that we're proud of.
JILLIAN: Rightly so. It's wonderful to hear the individuals inspiring their neighbors and families to consider the lifestyle changes. I'm curious, you mentioned earlier that the sedentary lifestyles and the processed food diet has become more normalized. And I'm wondering, have you been able to find a way to revisit or focus back on more traditional diets or activities that might be representative of the community's culture?
CECILIA: Within the PI-DPP program, we integrated the existing programs that are like doing these things. For example, our local college, they have a program under USDA. And what they usually do is they do the cooking demonstrations and all. So we partner up with them to come into our sessions. Like if we have a session at five to six o'clock, they come in, and then they do some teachings on the importance, benefits of local food. And then they actually do the cooking demonstrations. And these are really recipes that were like cultural, accepted and they’re used to. So this is one of the things that we do. And the other thing we do is we partner with local markets, food markets, fish markets. And we sometimes like you know, when there's that very recognizable milestone that is reached, we kind of offer local food vouchers, like for fish, or for local produces so that the participants can go and get at those shops. So I think these are the two things that we do. And the other thing is we kind of support the local activities that are promoting physical activity, like during our community events. They usually do games and sports or walk and dance. And we kind of provide little incentives, tokens of appreciations for the participants. But these are the little things that were we were able to integrate into our programs.
JILLIAN: I'm wondering what's happening in terms of outreach for the younger generation, as we've heard you discussing that diabetes has been an intergenerational issue in many of the Pacific Islander families. Jen, do you think you could give us a little bit of an idea of how AAPCHO or the PI-DPP program is focusing in terms of the next generation?
JEN: I think Cecilia kind of touched upon this a little bit. I think that the classes are, you know, not just in a classroom but open, doing activities with families. I think many of our partners have opened the classes, because the family is the support system. And that's where, a lot of these changes are possible for introducing new foods or having, family members who are in the program have support or see how everyone can contribute. So I think that that's one way younger generation are getting exposed to, you know, healthier lifestyle or options or learning about some of the topics they get to discuss and a role that they might play, in impacting pre-diabetes for themselves or for their family. I would say, too, for some of us, there are some younger lifestyle coaches themselves. Also recruiting friends, you know, maybe in their 20s, but then that influencing their peer group I was thinking about one of our partners in Chuuk State, they started a volleyball league and they meet on a regular basis, around the class, and that kind of getting younger folks more interested or in sports or things that they may gravitate more naturally to, but, making connections between those fun activities, and, you know, preventing or staving off diabetes for themselves and their families. Those are a couple of examples. But I think, Cecilia might be able to share more.
JILLIAN: And Cecilia, do you have any additional thoughts about that question?
CECILIA: I think the younger generations, they're really interested, but procedures for the program is, they're not yet included. So what we do in the islands, like for one of my classes, I have eight adult members that were eligible. And then I have eight younger ones, they're not eligible, they're not 18 yet. Their ages ranges from eight years old to 17 years old, and there's eight of them. So my intention was to get them to like, learn at an earlier age, and they're really interested. They even got to know how to fill the food blogs, the activity logs and the action plan forms. They went through the whole year. Their attendances were even better than some of the real members. So I think this is one way that I was really seeingthat it's important. They're interested, and they're not yet there. And it's really good to instill these very important things in them so that they can practice at an earlier age, and then stay on the healthier side in the future. And the other thing that we do is we get younger assistants. And these are the people that will weigh our participants, collect the food blogs and help the coach during the session. But I think with them being in there for all those 22 or 26 sessions, they've learned a lot and they then became participants as well, but they're not eligible in terms of age. But it's great to get them in as early as possible. And I hope and I wish that we will have something really specifically tailored for them, so that they can be at an earlier age and be exposed to these interventions.
JILLIAN: I love hearing that the young folks are engaged in the in the work as well. It's like this intergenerational solution for what we're considering this intergenerational issue, and they will be great contributors to their family's health.
JEN: I think that there's a real opportunity to continue to encourage the support for more family-based interventions for communities of color and vulnerable populations that naturally do a lot of work and support each other through family-centered activities, especially when it comes to lifestyle change. And I think one of the things that APPCHO is trying to look at is how do we advocate for that? We look at more data that supports family-centered approaches to diabetes prevention that are much more organic to a lot of the communities we work with, and looking for more solutions there.
JILLIAN: Continuing to look at the future and future generations, Jen, can you speak a little bit about this increased out-migration, as these communities outside of the continental U.S. are dealing increasingly with climate change and are relocating. How is this impacting the need for more tailored Pacific Islander diabetes prevention care?
JEN: Tremendously, I think we're seeing Pacific Islander communities and populations everywhere across the U.S. now not just in the Pacific region, and families migrating back home to the Pacific region, or spending part of their time in the continental U.S. I think climate change has contributed to some of that, as well as economic opportunities or families that have come over to Hawaii, or the continental U.S. and are bringing family members over. I think there are new opportunities. Now we see in sort of middle America, and the inner mountain regions, where Pacific Islanders are growing quickly, and growing to start their own organizations and their own partnerships. That’s some of the work that we're kind of working with in AAPCHO is to connect these communities to resources and a community health center in their area, or build partnerships, or hopefully, in the future, they could be a PI-DPP delivery sites, we hope, reaching their communities. And I think that is the reality now. And so I think that the program and master coaches like Cecilia, we've been trying to cultivate more and more in language trainers. Whether they could travel, or do something remotely, to connect to these communities, you know, either in their region or you know, across several time zones to enclaves here in the U.S. is such a cool thing to kind of have that opportunity at our doorstep. And, you know, hopefully continue to promote this lifestyle change. We'd have had lifestyle coaches who have moved from the Pacific region to, for example, Arkansas, and then connected with one of our partner affiliate orgs there and became a lifestyle coach for them. So while the sort of geography is vast, I think the community is so connected and close, that's a big asset, I feel in what we're able to do what they're able to do. And so resourceful and always, you know, I think, connecting or telling a friend telling your family member about this or how they can get this resource. So that that's something that we're excited to be engaged in as AAPCHO. It’s sort of seed planting I feel like for the next 10 years. And our hope is that we start to see more Pacific Islander led community health centers, hopefully, down the line through some of this kind of work that's been started.
JILLIAN: And Cecilia, how about from your perspective?
CECILIA: We were able to deliver online classes, where we got participants from like, Texas, Georgia, Hawaii, Guam, Fiji. That's one of the strategies that we did in reaching out to those being out migrated. And I think in the future, it's within the pipeline to really like, we have our like, for myself being a master coach, for us to reach out to those Kosraeans abroad, and really try to get someone out there to be certified as well, so that they can conduct the program to our people overseas.
JILLIAN: Well, thank you both very much. I've really appreciated the perspective and your time sharing all about this program with us. And before we come to the end of the show, are there any final thoughts from either of you that you'd like to share with our listeners?
JEN: I never would have thought when we started this almost five years ago, that we would be where we are today. And I think investing in community is the wisest thing, you know, for an organization or considering starting this. That partnership with community is really something you just can't sacrifice. I never would have guessed we would have reached close to 4000 people at this point at when we started in our first year. Not even having the tools in hand to start the program, like having to do those translations, so that we could begin introducing this program to community. So, yeah, anything's possible, I think with that perspective.
CECILIA: Thank you very much for this opportunity to really share what we have gone through so far. And I still hope and wish that we can do more things for our people in the near future, or continue what we're doing with our passions and commitments.
JILLIAN: Thank you both very much.
CECILIA: Thank you very much.
JEN: Thank you all for the opportunity.
CREDITS
SARAH: Support for this episode comes from the Health Resources and Services Administration (or HRSA) of the U.S. Department of Health and Human Services (or HHS). It is part of an award totaling $550,000 with zero percentage financed with non-governmental sources. The contents of this podcast are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government.
You can find our most current and past episodes of At the Core of Care wherever you get your podcasts or at paactioncoalition.org.
And to learn more about the issues we talked about today, check out a related training webinar we have available online. For the link, head to our show notes wherever you listen to your podcasts or you can navigate to it on nurseledcare.org.
You can stay up to date with us on social media @PAAction and @NurseLedCare.
At the Core of Care is produced by Stephanie Marudas of Kouvenda Media and mixed by Brad Linder.
I'm Sarah Hexem Hubbard of the Pennsylvania Action Coalition.
Thanks for joining us.
