S3E6: Nutrition Interventions for People Living with HIV

Colby: Welcome to Stocking the Pantry, a CalFresh Healthy Living podcast from Leah's Pantry. On this show, we discuss any and all things community nutrition, food equity, and nutrition security. We hope to foster collaboration and community, as well as leverage strengths among listeners, guests, and hosts as we share ideas and dreams of building a more equitable future where everyone has access to healthful and nourishing food.

Colby: Welcome to Stocking the Pantry. I'm your host, Colby D'Onofrio, and today I'm joined by Dr. Marianna Wetherill and Lacey Caywood from Tulsa, Oklahoma. Dr. Wetherill is an Associate Professor of Health Promotion Sciences at the University of Oklahoma, Tulsa, and Lacey holds a master's in public health, also from the University of Oklahoma, Tulsa.

Today I'm really excited to chat with them about a study that they have been working on for the last five years. The study is called NOURISH OK, and that stands for NOURISH to Optimize, Understand, and Restore Insulin Sensitivity in HIV for Oklahoma. This study looks at the connection between how food insecurity influences insulin resistance among people living with HIV, and whether or not a 12 week medically tailored grocery intervention can influence people with insulin resistance.

It involves sending curated food boxes to participants over 12 weeks. And the boxes also include a workbook called My Food Journey. Participants can use this workbook to reflect on their experience, and it was created in collaboration with our fabulous marketing and design team here at Leah's Pantry. So to start off, could y'all tell us a bit about your background, why you were drawn to this work, and how you found yourself doing the NOURISH OK study. 

Marianna: Hi, my name is Marianna Weatherill. I started my practice as a dietician about 20 years ago, and I was always drawn to wanting to help people living with HIV. It was a population that spoke to my spirit, and I just followed it. And, the journey that I've been on over the last 20 years has just been incredibly amazing, getting to first work at Tulsa CARES, which is our community partner for the NOURISH OK study. For 10 years I was a dietician, working actually in their food pantry. And, what really kept me wanting to work in this space was the diversity of people and lived experience that I was able to interact with, learn from.

Whenever I transitioned over to the University of Oklahoma, I just wanted to keep that work going. And so the NOURISH OK study allowed us to do that. 

Lacey: Hi, I'm Lacey Caywood. I am the study coordinator for the NOURISH OK study. 

And I got my start running health and wellness programming for, uh, YWCA for fitness facilities here in Tulsa.

And then I started my Master's at the University of Oklahoma in public health, and that's where I got connected with Dr. Wetherill and I worked as a research assistant on another food as medicine project. And really enjoyed that. It really spoke to my heart and I so appreciated working with somebody who had a lot of the similar ideals and values that I had when reaching the community and working with them. And so through kind of that work I got, introduced to NOURISH OK. And I've been doing it ever since. 

And I also, you know, strongly believe that having access to healthy and accessible foods is an absolute human right. It's really become a passion of mine.

Colby: I could not agree more that access to healthful nourishing food is a necessity and a right for all of us. Now, Dr. Weatherill pointed out Tulsa CARES, the community partner that this study is working with, and I wanna take a quick moment to plug a previous episode that we did on Stocking the Pantry Season One Episode 10, Exploring the Meaning of Food with Tulsa CARES. It was an incredible conversation that I got to have with Casey Bakhsh, who is the Chief Program Officer at Tulsa CARES, and we just had the most phenomenal conversation. Both of us were in like happy, compassionate tears by the end.

I will say I had the absolute pleasure of visiting all three of these ladies in Tulsa last year, 2024. Tulsa CARES is incredible. It was just the facilities, the energy there, that both of y'all definitely contribute to. So, I'm just so excited to be chatting with you guys again about this.

So tell me a bit about how the NOURISH OK study got started, and where are y'all at in the process now? 

Marianna: So it's really hard to believe, but, I guess this was about six years ago now. It was before the COVID pandemic, the NIH released a call for applications. Specifically it was the NIDDK, encouraging researchers to submit proposals, looking at the, influence of food insecurity on health outcomes specifically for people living with HIV.

For the purposes of planning and implementing food as medicine interventions. And as soon as I saw that funding opportunity, I immediately reached out to Casey Bakhsh at Tulsa CARES and I said, hey, do you wanna actually go for this? I had never submitted a NIH grant application as the lead investigator before; was a new experience for also Tulsa CARES, they had never accepted NIH funds before as a community-based organization research partner. But we collaboratively worked together to design three research questions that we thought would actually benefit the organization and their mission, improving the lives of people living with HIV. Fast forward where we are now, we've completed the first two aims of this study and we're wrapping up that third.

It's a little bittersweet because I don't want it to end. But I also know we've, we have learned so much and benefited so much from the data that we've been able to, to gather. 

Colby: So y'all mentioned your research questions, kind of your like guiding lights as you were going through this process. Tell me a bit about those. Why did you choose those three questions? What are they and why did you feel it was important to answer them?

Marianna: So food insecurity is really a cross-cutting risk factor for all kinds of chronic diseases, whether you have HIV or not, if a person is food insecure and experiencing that, they have many more risks for disease, complications, uh, disease progression, poor quality of life, et cetera, oftentimes, nutrition is very narrowly focusing in on that.

And nutrition of course is an important component of food insecurity, but we wanted to take a step back and say, what are all the different ways that food insecurity may be harming health so that we can understand it as a more holistic problem? Um, And then therefore, our. Intervention could also have a more holistic element.

We decided to focus on some downstream consequences of food insecurity, including chronic inflammation as well as insulin resistance, because they are connected with a lot of chronic disease outcomes, but they're also highly responsive to health behavior change in sometimes a short period of time. Um, so we felt like that could be a way that we could show how both, improve nutrition, but also other aspects of wellbeing might be impacting our bodies at a molecular level.

But then we're also looking at other things like people's mental health, other aspects of stress and whether or not those things are improving as a result of this study. And then in order to develop the intervention qualitatively, we really also wanted to take a deeper dive about what does it look like to have food insecurity on a chronic basis. 

Colby: There was one other thing you mentioned, there was the insulin resistance, and chronic inflammation. Where is the intersection with the symptoms of HIV? 

Marianna: Yeah, so that's a good question. We know that people living with HIV are often more likely to develop insulin resistance and also more likely to have chronic inflammation.

The insulin resistance may actually be due to some of the medications that they take to actually treat the condition and keep it managed. But then also the chronic inflammation can be caused by their compromised immune status. That can allow other infections that they might have to be driving chronic inflammation, but it can also just be because of chronic stress, toxic stress.

We also know that that can drive inflammation. It isn't just a single thing. Um, but we knew that those two, indicators were something that were pretty common in this population and that we felt like we had a chance to improve them. 

Colby: Very interesting. And I was trying to like put those two things together and couldn't really do it in my head.

But the way that you just said that makes so much sense. 'Cause yeah, you could have just studied those two factors alone and I'm sure you would've had some really interesting results. But adding in that extra layer of people living with HIV is I would say super important.

Marianna: Whenever you're designing any kind of a research study that. Is ultimately supposed to result in an intervention or help the community, you need to have community representatives at the table so that they can keep the research team in check. We had our plan measures, we had our scheme of what we thought was gonna be related to what, and we showed it to them and they said, where is chronic pain in this diagram?

And we were like. It's not there. So, so we actually modified the survey, to incorporate pain measures, I think that that's a really good example of potentially a really important mechanism that we completely would've overlooked without them advocating to add it.

Colby: I wanna know a little bit more about the study design, the rollout. Like what did it look like when you were recruiting participants? What does this look like from a participant's lens? How do you collect data? All that fun nitty gritty study stuff. 

Lacey: So this entire project was completed in three different stages.

Our first stage, was a cross-sectional study, meaning participants would come in one time, we'd collect measures. And so our enrollment appointments were pretty robust, because we had lots of objective measures in addition to our biomarkers, like our blood draws and things like that. We also looked at standard body composition measures, so waist circumference, height, weight, things like that.

But we also included something that's pretty unique to our study is something called the veggie meter. And so what it does is it uses light to measure the carotinoids that are stored in your skin. So carotinoids are the things that make plants colorful. And so this is a way that we can measure it without being invasive because it only uses light.

It's kind of a proxy measure for fruit and vegetable intake over the past couple of months. And so people were really excited and curious about doing that. In addition to all of those measures, we do some surveys, like Dr. Wetherill said, we ask questions about their physical health, their mental health.

We asked about of course, food insecurity, as well as food environment questions. We also did a dietary recall where we asked them to go over all the foods that they had the day before. And so in our first aim, we ended up with 410 participants enrolling. It was so beneficial, we would not have done any of that amount of enrollments if it weren't for Tulsa CARES and the care coordinators. 

Uh, we also had different kind of lunch and learn events. We did a scary movie with popcorn and talked about how research could be scary to some of their clients and to some of these populations, and so how, how we try to mitigate some of those fears. and then in aim two, our kind of qualitative part, where we did one-on-one interviews with food insecure participants, we did aim to, hear more about their, experience with food insecurity, what barriers they face, how they overcome those barriers, and just, again, their lived experience. And so aim one and aim two kind of, help guide our actual intervention, which we are doing right now.

Colby: I am really impressed throughout all of this, how much the participants guided the study. 'Cause it can feel like such a division between academia and lived experience where y'all have the background and the research; know how, and then you try to bring it to the public and they're like, I don't know these big words you're talking about, but I do know how to watch a scary movie and eat popcorn! Like, that's such a great way to bridge that gap. 

Lacey: We also did focus groups, in which we showed them some prototypes of the intervention.

So we actually had built our proposed food boxes. They got to do activities like putting them into two stacks: these are the things that I would eat or I would try, and these are the things that I would not, um, we put up, on a big screen, some of the proposed curriculum materials, and they gave us feedback on that as well as some recipes.

But it was, very enlightening. Again, like our first conversation about, chronic pain , focus groups really helped to inform our actual control trial, which was aim three; participants come in, and they collect a lot of the same measures as they did in aim one; so that veggie meter, body composition, completed surveys. But in this one, they get randomized either into our intervention or control group, and then they'll come back 12 weeks later.

And then we've also got some different phone surveys to check in with them. Um, so for those who receive the intervention, they get three monthly boxes of supplementary food and cooking items that are all shelf stable, anti-inflammatory foods that were specifically selected for this intervention.

And then I do want to make sure to note and highlight that this is a weightless control design, meaning our control participants, after they've completed all of the study activities, they also received this intervention, so they also received the food. That was, um, something that was really important to us, that everybody, regardless of which group they got put into, received, uh, all of the incentives, all of the food items. 

Recruitment was very similar for aim three, however, because we were able to build up trust and relationships throughout this entire period, whenever aim three came around, we did have a lot of people that were like, oh, yes, sign me up.

I've been waiting for this. And so I think that just speaks to, the effort that we really do try to, ensure people have a good time during the appointments. Yes, we're doing research. Yes, we're collecting a lot of data, but how can we make it comfortable and hopefully enjoyable for the participants, as well.

Colby: It sounds like by the time y'all got to aim, three word of this study had spread among the population. And so people were like, yes, finally it's my turn. I want to do this. As opposed to like, oh God, the study people are gonna come and they're gonna drag me into this thing, but it sounds like y'all have done a really incredible job of making it approachable and applicable and fun. 

Lacey: Yes, absolutely. I have some participants that swing by and visit just to say hi every once in a while. 

Colby: So that's awesome. That's like, that's the best, you know, where your participants feel good. You guys feel good. Um, and I'm sure you're getting some great data that I'm really excited to see published.

You mentioned previously that there is more than just kind of those qualitative metrics, like the veggie meter. So cool. Never would've thought of doing that. That's awesome. Um, but there's also those like more quantitative kind of soft aspects of this study.

The mental health, the stress, and I know y'all have a food journal, the My Food Journey. What does that food journal look like? Why did you create a whole new booklet?

Lacey: I think one of the big drivers of that was in our focus groups, we realized that maybe some of the materials that were out there weren't as relevant as they could be to our participant specific lived experiences. And so we wanted to ensure that whatever materials they were receiving, whatever that intervention looked like, that it was relevant and applicable to their life. And so, the way that our workbook is set up, there are 12 different weeks or modules that fall into three months.

And so those three months, the first month goes over stress management and the mind body connection, because we realized in talking with, our folks that sometimes there was a disconnect between understanding the relationship between their emotions and eating and the foods that they're choosing to eat.

And so we wanted to first kind of step back and make sure that relationship was really focused on. Uh, the second month is My Personal Food Story. And so that really goes over the exploration of food, and what does that mean to me and my life and my experiences.

And then lastly, month three is uh, writing the new chapter of My Personal Food Story. Taking, okay, what I've learned so far from this journey, and how do I apply this going forward because sustainability was really important to us.

Because a lot of times we're focused on this 12 weeks, this is what they're doing. But, um, for us, we wanted to think about what happens afterwards? What happens when all the food that they've received is gone? How can they continue? Those were some of the things that helped us to develop the workbook into something new. Uh, we also have, three positive psychology driven sections, including self-care exercises, self-compassion, and mindfulness. And so we really wanted to, again, go beyond just traditional kind of nutrition education and include some of those elements as well.

Marianna: I'll just add that, that was a big core point of feedback from the focus groups. Whenever we presented the curriculum about the sustainability aspect, they said, we want to be encouraged to really think about, well, what happens after these 12 weeks?

And think through, how can I continue whenever the intervention is ended. We also were able to incorporate quotes from interviews within the workbook to illustrate the concepts that we were trying to teach. 

People said, "I sure do wish we could come together as a group during the intervention and work through these things together." However, that's not how this particular study was designed. It was designed to, you know, deliver the boxes to people's homes and overcome those access barriers. So that was kind of our attempt of even though you're doing this workbook by yourself, or maybe with other people in your home, that there were also some, some things that other people in the community were saying that you could read through as you were reflecting yourself. 

Lacey: During the focus group, something else that, was brought to light was an emphasis on, "I don't have time or the attention span to sit and read pages and pages and pages." And so we did try to incorporate a lot of different activities, just something like really small that they could do to apply some of the, um, content in there. So that was another piece that we tried to make it really interactive and less, you know... 

Colby: As someone with a bit of an academia background, I don't love reading a huge paragraph of information with no way to then apply it.

It's not a great way to learn. But I love that this Food Journal, like I think something that's so important about interventions that are successful is that they really acknowledge the reality of the participants, they meet the participants where they're at. And will probably, I imagine, give y'all much better and much more insightful results.

And speaking of results, if you guys have any or are able to share them, have you noticed any trends or interesting patterns that have emerged so far? 

Marianna: So it's an ongoing study, so we don't have any outcomes to share yet.

But, we've really focused heavily on process evaluation, which is often something that's missing in a lot of these food as medicine trials, they don't actually ask people if they ate the food, for example. And that's important, right? If you're giving people groceries, you would like to know if they were actually consumed, and also at a household level, are other people in the household eating it?

We usually in research focus on this individual level, but people eat and share food together and that is something that I think is pretty novel with our approach is that we are focusing on whether or not they consumed every single item that they received. Was it shared with someone? Was it given away to someone, or did they not just eat it at all? 

We also asked at baseline enrollment about readiness for healthy eating change for the types of foods that they would be receiving. So for example, fruits separate from vegetables, beans, whole grains, teas, spices, things like that, and the readiness to change varies dramatically based on the type of food that we're talking about. And so I think for how to apply this moving forward, is realizing that this quote, healthy eating is a very broad construct, but really it's the foods within that construct that need to be looked at separately and meet people where they are in their readiness to change and provide them with those things that they're going to be most comfortable and ready to eat. And then we can layer on other things, as an intervention progresses, but we need to start with meeting people where they are. 

We also published, from the aim two study, the qualitative interviews, looking at reasons behind why people make the food choices that they do. And we used a really interesting method called Q methods, where people rank and sort different statements about their opinion on a certain thing. And so for us, it was their opinions on why they are making their food choices. And we identified very different profiles of people within a population that's all living with food insecurity.

And and so I think that's another important take home message from our study is oftentimes researchers views, quote, "food insecure populations" as just this homogenous group of people. But from our data and from the data that Lacey collected for that Q method study, we saw, like, no, that that's not true at all, and we really need to know what are these different types of perspectives and opinions within this population of people who are living with food insecurity so that we can better design the interventions to meet their needs. 

Colby: This is like when you're talking about how behavioral our relationship to food is, it's like, yeah. Duh. Of course we all eat very differently. We all eat very individually. Like, even what you were saying about how a lot of other interventions weren't following up of about what people actually did with the food. Did you eat it? Did you share it with your family? 

Um, Lacey, I wanna turn it over to you. Are there any other interesting patterns that you've seen on your end emerge so far? 

Lacey: Yeah, so a lot of the feedback that I've gotten is just what people are telling me, and quite frequently they talk about how much they've loved experimenting with new foods, that this study has really given them the opportunity to try foods they would've never dreamed of trying or even liking. And so, for example, one person was telling me that they're actually gonna try Indian food now because they used garam masala and curry powder for the first time and loved it.

And so I think that's one of the biggest immediate feedback pieces that we've gotten, is just people are thinking about food in a very different way. They're getting their creativity involved. They're getting their family involved. And speaking to kind of some of those household effects. People have reported, you know, their grandson eating vegetables because they're able to sneak them in the pizza or the meatballs or, their kids actually asking them for freeze dried strawberries instead of candy. And just, you know, it's not just the individual person who is benefiting from this, but really just the family as a whole, or the household as a whole. 

Colby: Food is so creative.

It is such a, an experiment and a way to stretch ourselves. But exactly like you said, not everyone has that luxury, that, like, experimentation is a luxury. 

Someone who doesn't have the food dollars to spend on that doesn't have that luxury. And I, I wish we all did.

How do you hope that the information from this study will be used to inform future projects or interventions in this area? 

Marianna: We're fortunate. And again, we wouldn't have even proposed this grant had we not had a relationship with Tulsa CARES, who has a very robust food pantry program, nutrition services program.

Um, so they actually have a registered dietician who works in the food pantry, they have a healthy budget where they can choose what items are stocked in their food pantry. And so the goal has always been for them to be able to take the food items, the anti-inflammatory food items that we're testing in this intervention, and for those items that are the most popular and that are the most connected with the health outcomes, having those be a permanent offering for all of the clients at Tulsa CARES.

So that is the vision for this project and the collaboration that we have. However, we have also received a lot of interest about the My Food Journey Workbook.

We recently piloted it in a small group format, with a small group of women under going in intensive outpatient therapy for substance use recovery. And it was also very well received. And so I think moving forward, just really taking that deeper dive into the comorbidities of substance use and food, because those often do have that underlying trauma element.

The need for more self-care and self-love I hope we get to explore more in the next chapter of this work. 

Colby: I love that. This book with its robust approach: yes, it's about food, but it's also about, like you said, the self-care, the self-compassion, the mindfulness, understanding stress in our bodies and how that influences, our diet as well.

In Season 2 Episode 2, we got to talk to Dr. Annie Lindsay, who is doing nutrition in substance use recovery. And so it's really cool to hear that this book is also being brought into that sector.

Has there been anything about this study or just the experience of conducting this study that has surprised you? 

Lacey: I think for me, I've really enjoyed hearing, about how people are applying the things from the intervention, not just the foods, but the exercises from the workbook.

So for example, we have one participant who works as a security guard overnight, and he's talked about how boring his shifts always were.

But now what he started to do is do a gratitude walk between each of his checkpoints. And so now he's turned this kind of daily monotonous thing from getting from one point to another into this gratitude exercise. 

Colby: People are so creative and so resourceful when given the opportunity and like a safe, comfortable space to do that. You know, had you come to this person and been like, "you should do a gratitude walk at work", they would've been like, yeah, right. But through this, like, slow, kind of easing them into this approach, they came up with that on their own and made their job a little more interesting, a little more useful for their personal self.

I love that. Hmm.

I feel like so many aspects of this study reinforce the holistic approach to food.

Now, speaking of food and how we eat, I wanna know what do y'all stock in your pantries? That could be literally or figuratively. 

Marianna: Well, I think both Lacey and I were fighting over this answer because both of our answers were beans.

Colby: Okay. I love beans.

Marianna: For our, for our physical, 

Colby: I have gone on this podcast multiple times and talked about how much I love beans, so we are in great company. Wow. Tell me about your beans. 

Marianna: I am a proud member of the Rancho Gordo Bean of the Quarter Club.

And so what I really like to do, and what I find joy in with food, is thinking about very simple things that we often overlook as being, like, something to admire, like a bean. 

Colby: I'm gonna jump in here, 'cause I thought you were joking when you said, like, Bean of the Month Club.

Lacey: No, she's not.

Colby: There's literally the Rancho Go– I just looked this up– Rancho Gordo Bean Club. And it says, the website says, "bean freaks rejoice."

I'm rejoicing. I know my birthday is next month and I know what I'm asking for for my birthday. I cannot wait.

Lacey: I also am a bean freak too. Just take some beans, some sun dried tomatoes, a little oat milk, vegetable broth, saute it down, let it thicken, add some greens. Done, and it's so quick. Eat it with some crusty bread, and it's like delicious and filling and just easy.

Colby: Yes, you are in very good company. I love that recipe that you just shared. I often go for kind of like a fajita style bean vibe when I'm tired. I am, I always have onions, I always have garlic, and if I have a pepper, or honestly just any vegetable on hand, I usually have chicken in my house too.

Um, and I just kind of saute up those fajita veggies, put 'em over a bed of black beans, like I'm a happy gal. And if there's crusty bread involved... Yeah. It's a good meal. 

So how can listeners get in touch with you and learn more about this study, how can they stay abreast to, the results that are gonna come out? 

Marianna: So we do have a website that's really just been our participant facing website, but since this study will be wrapping up soon, it'll soon be, like, open to everyone. That website is howdoyounourish.org. We do have two papers that we have published. So howdoyounourish.org is where people will be able to go. 

Colby: That link will be in our description! This has been really fun chatting with you all. It's just such an interesting study and I'm so happy to know more now about the details and the logistics behind it.

Colby: It sounds really successful. Helping people, approach new foods, building relationships with the community and among the community. This has been really, really awesome. So Dr. Wetherill and Lacey, thank you so much for coming on our show and chatting with me today. 

Lacey: Thank you so much for having us.

Colby: Thank you also for sharing about the Rancho Gordo Bean Club. If nothing else, I will be taking that, to implement into my life quickly. So that's a great intervention that I'm excited about. Thank you listeners so much for joining us today.

I am your host, Colby D'Onofrio.

Colby: Hey there, it’s your hosts,

Carlos: Carlos, 

Tee: Tee,

Colby: and Colby. With heavy hearts, we’re announcing the close of the Stocking the Pantry podcast. 

Tee: Creating this show over the past two years has been such a joy, 

Colby: And we hope you’ve enjoyed listening as much as we’ve loved making it. 

Carlos: While we won’t be producing new episodes, this feed will remain available so you can revisit your favorites anytime. 

Colby: We hope the stories, learning, and laughter continue to inspire your practice, your community, and your own life. 

Tee: Thank you for being part of the Stocking the Pantry journey. We look forward to crossing paths with you in another space. Until then, ciao!