The PROs described by participants were organized into five themes including: how CHR education and coaching (1) helped improve their ability to understand their clinical numbers and (2) incorporated more healthy behaviors into their lifestyle. Then, 3) how participants managed their health problems through individual and spiritual means and (4) family caretaking and support. Finally, participants described how CHRs delivering COPE provided them with comfort and support not experienced with their primary care provider. All five themes included common threads of understanding and regaining control over health issues and provided insight on how COPE’s materials and trainings impacted their experiences with their CHRs. These results also highlighted ways that the CHR-COPE and other CHR support programs could improve client experience in the future.
Sufficient understanding of target clinical numbers from CHRs gave their clients a sense of purpose in their illness management
Overall, participants believed they had better understanding of their clinical numbers after the study year. Interviews demonstrated that participants cited CHR education supplemented by COPE materials as the cause of this increase. Participants explained not fully understanding what their numbers represented, but could interpret them as being in healthy or unhealthy ranges, which allowed them to take a meaningful role in their illness management, by checking, tracking, and charting their numbers.
Yeah, AlC every 3 months, what your average is, and the last time mine was 8.5…It was way higher before so, I’ve been improving… I check my blood all the time and, uh, pretty good. Down to 98, 96, and 120, 130 in the morning.
(Robert)
When asked how well they understood their numbers, about half of participants admitted to not fully understanding what the numbers represented. Rather, they focused on whether numbers were in ‘healthy’ or ‘unhealthy’ ranges.
[Do you feel you understand what Alc and blood pressure kind of means and what they stand for?] To be honest, I didn’t even know about that. To me it’s just a number. If it’s too high it’s not good and too low it’s good. That’s just the way I think about it. It’s like no good and good.
(Jonathan)
Participants interviewed appreciated the CHRs’ use of visual materials to help them understand and interpret these ranges, particularly for measures that participants took by themselves on a regular basis, such as blood sugar or blood pressure. A few participants specifically cited the visuals on the flipcharts as helpful in aiding their understanding of the material.
When she has time, she comes over here. Brings books and we read together. Then she explains it to me…She brought pictures and I understood from those pictures, including the flipcharts. (Navajo; I like them coming over to visit) I wish they could come all the time, like mostly everyday (Laughs).
(Marie)
She’ll bring out little pamphlets like and then he’ll understand what it’s for, like for his feet and then umm… Then, what else? Like you said his A1c, he has it up on the wall so he knows, and then his blood pressure- um his sugar level, she marks it where it’s good and where it’s not good. So, he has it up on his wall so he knows that…
(Shuman + family member)
Finally, almost all participants explained that being able to understand their clinical numbers using visual materials helped them feel more in control of their health by making concrete changes to their lifestyle.
She kind of really woke me up. You know, to things, my foot, my A1c, good to look at it. [Okay] Much more better. It. and aah, took it myself. And people like that are angels to me and other people as well.
(Sheldon)
One participant demonstrated using his newly acquired knowledge of high and low blood pressure numbers to inform when he needed to take walks or rest.
He knows his blood pressure. He knows if it’s high. Like I’ll check his blood pressure and if it’s like 145, he’s like “Oh, it’s high.” Sometimes I have to like, he doesn’t really know, but I let him know that the top one, if it’s high and it’s not good. The bottom is always good. It’s always the same. But the top is… when I tell him, it’s high. Then he’ll be like “Okay I need to go for a walk” or “I need to lay down.”
When these preliminary results were presented to COPE’s CAG, they confirmed the study team’s interpretation that sufficient understanding of how to interpret clinical markers as within ‘healthy’ or ‘unhealthy’ ranges allowed COPE participants to feel more in control of their health.
Participants reported that increased knowledge of healthy habits gave them the tools to lead a healthier lifestyle
Participants described CHR coaching as contributing to their incorporation of more healthy behaviors. In our interviews, participants explained that setting and achieving small lifestyle goals, referring to the SMART goal portion of MI, not only improved their physical health, but also contributed to their sense of empowerment.
[How has your CHR helped you make changes in your lifestyle?] (Navajo; Yes) Instead of staying on the couch, do something around the house, she said. At least take a walk to the highway and come back or walk around the house, she said. I do that.
(Marie)
Many interviewees spoke most positively of their changes in their eating habits. About half of participants described making an effort to limit portion sizes and eat healthier.
Like last night…, my wife [did] a good job of cooking, and aah, I just had one serving. Good stuff like that, I usually have two. I really had to think about ‘Okay, one serving’s good enough.’ (Laughs)
(Robert)
I totally got away from sodas. I don’t drink sodas no more. Bread, I don’t eat no more. Just water, constantly, every day, I drink a lot of water. Junk food I don’t eat anymore. Even when we eat out, my family, I just get a salad while they eat their burgers. It kind of changed my mind around it. It doesn’t bother me, like if she was eating a triple-double burger, it doesn’t bother me anymore. It used to. I used to think, “Ughhh, I want one too” but I had to change my mind I said. So that part, I had to do that myself. [And what made you decide to make that decision to change?] Well I just woke up one day and said this life isn’t for me. Just sitting on the couch doing nothing. Just getting bitter by the day. Yeah, that’s just what I thought.
(Jonathan)
Our findings suggest that a combination of health education and MI techniques, including the setting of SMART goals, provided participants with an understanding of simple healthy behaviors that can improve their sense of control of their health.
Almost all participants discussed gaining knowledge from their CHRs through health education. These individuals recalled CHRs using educational materials such as COPE flipcharts, incentives, and brochures and found the materials helpful in allowing them to understand their diagnoses.
(Navajo; Yes, she explains it nicely. She says) She explains to me real good on how to eat. What to eat and all this, not too much, just a little portion.
(Marie)
They told me, when he’s going to drink juice, this is how much he’s supposed to drink. Apple juice, orange juice, pineapple juice. Don’t drink a whole lot… Yeah, he got a little tray too. Whatever he’s going to eat, he’s supposed to have the tablespoon full on each of them. Meat, he just has about this size.
Secondary to changes in diet, walking was a particularly popular form of exercise and was mentioned by almost all participants as an easy way to stay active.
Just doing a lot of exercising and walking. I think that’s what changed the whole thing. My Alc and blood sugar all went down. I think that’s what it was, just a lot of exercising and umm, usually wake up early at 5 and go walking before I go to work.
(Vincent)
While participants spoke more about changes in their diets than exercise, they did indicate an interest in learning more on how to keep active. These results suggest that COPE participants benefited from previous health education and wished to expand their health education to other areas of improvement in their own health management.
Participants sought balance in life through CHR coaching, spirituality, and Native arts and crafts
Participants often spoke of their experiences in coping with their physical, mental, and spiritual health. When asked about skills they had acquired to become more capable of managing their illness, participants cited their personal, emotional, and spiritual experiences as helping them gain meaning and balance in life.
Interestingly, in our interviews, about half of participants correlated their initial chronic disease diagnosis before being engaged with the CHR program with a distressing life change or loss. This corresponds to significant literature supporting correlations between stress and glycemic control [26].
Sometimes I’ll feel down. I just have to keep myself busy just to forget it. Most of the time it was depression because I lost my father back in 2011. After that, because of all the depression, I started being a diabetic. My sugar level was 400. Way up there. My A1c was 135 and ever since I started going in for, my uhh, surgery… my journey, I’ve gone down all the way to 6 on my Alc. [Oh wow, great] And then my umm… what do you call it… that body… body… was it BLM… [Oh, BMI] Yeah, BMI down to 59.
The way my health is like, umm, back in 2008, before 2008 I use to take care of my dad. Every time I took him to the hospital, they use to check my blood sugar and everything. Everything was normal until he passed on in 2008. I didn’t, no way, not lonely or anything but somehow I guess my body just felt that way. All of a sudden I had heart pain and about a month and a half after he passed on I had a slight heart attack. Then when I went to the hospital they told me my blood sugar was over 300.
(Vincent)
Therefore, recovery involved physical, emotional, and spiritual healing. Without being prompted by the interviewers, about half of people interviewed identified Navajo traditional-spiritual practices as helping them gain clarity with poor health and troubling life events. About half of participants described the importance of traditional knowledge, which included listening to medicine men and elders, speaking Navajo, and paying attention to dreams. Others also used church, prayer, exercise and arts and crafts.
When you speak Navajo to [Speaks in Navajo] your relatives, they say to ask your elders when you have a question, when you are in doubt, and if you’re ever in a bind. [Speaks in Navajo] That’s how it seems, [Speaks in Navajo] when you’re lost. And you ask questions. And in the middle of it, [Speaks in Navajo] you realize it. [Speaks in Navajo] it’s like you get lost, but you realize it. I was told that you can ask them for prayers, from elders. Your strong prayers. I believe in my dreams. My dreams too, I look at that.
I do artwork, I do that and wood carving. I dove back into it. It kind of brought me back up. I felt better after that… I think it’s just your family, your prayers, the things that are really meaningful to you. Like for me, I do a lot of artwork. I paint. I do pottery.
(Vincent)
In an attempt to tease out concepts of illness self-management and balance with regards to COPE’s role, questions to clarify how these concepts fit into participants’ evaluation of health were worked into the qualitative interview. Participants described balance as a holistic concept that includes physical, mental/emotional, and spiritual well-being. Self-management mechanisms explicitly taught by the CHR, such as eating healthy food and exercising, were seen as activities that added to participants’ sense of balance.
Yeah, I try to set aside a time for my prayers and then exercising more. Try to stay away from the foods that are not good for me. I try to do a lot of walking. Lately, ever since it got much more colder, I haven’t really been doing that. So I feel the way, it seems like, when I use to walk all the time I use to be energized and ready to do things. Now I kinda like, don’t feel up to it sometimes but I think that’s what mainly changed.
(Vincent)
That’s what I’m about, about my faith. I’m not to supposed to share my faith, I’m supposed to live it. I’m supposed to be healthy, be able to walk, balance, Mentally, spiritually.
(Robert)
About half of participants expressed this sense of balance as something they strived for, could be obtained with effort, was clearly either present or not, and could be regained when lost.
I was raised with the traditional people from way out there, way back and they really helped me, too, with my balance and my prayers, speaking Navajo. Surely, that really helps. [Speaks in Navajo] …See uhh… see when my dad died… probably in 2000, I lost my first son on the Hopi side. It’s that guy with the football jersey. That’s when it gets you down, you try to get up to balance, but I haven’t done that.
While participants described clear improvements in coping and health-specific behavior changes during their year in COPE, overall life balance, described by participants as broader holistic wellbeing, did not change dramatically within that same time period. While this is consistent with the ongoing, dynamic life journey that shaped their overall spiritual and holistic wellbeing, traditional-spiritual practices and the arts were important to participants and addressing them may help them achieve health larger goals.
Family members involved in participants’ care overwhelmingly enriched their benefit from CHR visits
Within the interviews, many participants mentioned receiving regular visits and support from family and friends. Among those that did receive support, family members emerged as the most important form of social support especially with health management. When asked in the interview about who they were closest with, almost all described being closest with family members and a couple identified other close friends.
[Who do you say is the closest to you in your life right now?] I would say my family and then my aunts and because we talk. Just like they say, A family that prays together stays together. That’s how I look like at it. If I need to talk about something there’s someone I can talk to. [How do you support each other through that] Umm, just through words.
(Jonathan)
You know I used to think about getting old. It seems like it was just there all the time. My birthday would come up, I use to think, I’m just getting old. That’s what use to come to my mind. I have some friends who really like my artwork, they kind of give me a boost. They say, keep it going. That’s fine work you do. Then one of those friends, she sent me a card for my birthday. Then on top it says, “You’re not getting old” and inside it said, “You’re a masterpiece in progress.” Just by reading that, it seems like it turned the whole thing around where you began to see the quality in your life. I think sometimes simple things can turn around where you’ve never thought of it. So now I want to work on that, be the masterpiece.
In interviews, half of participants’ family members helped in a variety of ways such as preparing healthy meals, providing transportation, and/or helping monitor medication.
My daughter tells me when to take the medicine and how much to take. Sometimes I don’t remember how many I’m supposed to take and when they tell me to take, I don’t remember. And then much later I’ll remember what I was doing.
(Marie)
Not only did participants describe their family’s role in their health management, family members were present in the home in almost half of the interviews, and in a couple of cases, joined in on the interview.Because family members were frequently present in participants’ homes and played an important role in their health management, CHR visits also facilitated family health education. The two family members who joined in the interview described also sitting in on CHR visits.
[What do you enjoy most when the CHRs are around during home visits?] We like it when they tell us what to do and how to take care of himself, everything, taking medications. He’s trying his best to do what he was told. (laughs)
(David + family member)
Overall, participants acknowledged the importance of family and friends in their ability to manage their health. Additionally, participants showed interest in more resources that better incorporate their support system in their health management. These data suggest that the COPE-CHR partnership should explore additional materials and training for clients’ family and friends in the future.
CHRs are important confidants for their clients who may not see or trust a primary care provider
Almost half of participants described their relationship with their CHR as casual, friendly, or familial, which made visits enjoyable. CHR clients characterized their CHR as a confidant, who would not only listen to their perspective on their personal lives and health ailments, but would also be able to understand and provide advice, and to provide adequate health needs. A common theme was feeling more comfortable discussing their personal lives with a CHR than the client’s provider because of this close relationship.
Most of the people interviewed mentioned a frustration with the healthcare system, highlighting turnover and lack of intimacy with their provider.
Yeah, it’s like I’d rather talk to [the CHR] because they’re closer to me. And those doctors over there they constantly switch over. I’ll see this person then the next time I go there there’ll be a different one. I have to explain the same thing over and over again. So the CHR already knows… they know my problems, my journey, they know what I’m going through. Then when they see me they’ll say, ‘Hey, how are you doing?’
(Jonathan)
The turnover of providers made it difficult for participants to build a lasting and meaningful relationship, which in turn generated disappointment.
But I heard that, the doctor that we go see took off again and we have to go to another doctor. We had an appointment to see another doctor. I don’t know when. [And that makes it a bit difficult, traveling further] Yeah. We use to see one in = [Location 4 Name Omitted] = he said he was going to take a month vacation. He’s from = [Location 5 Name Omitted] =, going back over there for one month. He gave me an appointment again in two months, and here I was waiting for it and they wrote a letter saying the doctor found another job in = [Location 5 Name Omitted] =. He’s not coming back. (Laughs)
[Do you know the longest time you’ve had one provider? What was the longest time that that provider was your provider?] Yeah. That’s the one that I was… [Three months] [Three Months is the longest] Yeah. Yeah, then uhh, I don’t know. It might change. I gotta, I guess… just the way I see it, (Navajo; Are they just learning on us) I don’t know how to explain it, but they just, they just do tests on us. Then they go to another hospital. I mean, maybe just they just train- [Practicing] Practicing on us, on us Indians. Maybe they just practicing on us. And I don’t know if they’re rotating or going onto the next hospital.
A few participants expressed shyness or discomfort with doctors who they were unable to build a trusting bond with, one participant suggested that some nurses were more approachable.
[ So, do you feel comfortable talking to her or does the accent make it harder] Yeah, uh, I don’t want to keep questioning her like that. She might, then she might um… take it the other way I think. So, uh, sometimes there’s some nurses that work together to them. She asked them to come in and they will explain it more. So I don’t know.
One participant expressed discomfort with doctors over-prescribing medications and occasionally questioned their judgment.
From the doctor they’ll tell you, you need to take your medication. I tell the elders too, if you take your medications everyday go back, get refills and get medication, just take it daily. What if you’re at the normal level again and doctor just keeps telling you, take it, take it. You guys need to realize that and kind of, maybe I shouldn’t say this but I tell them, maybe go without your medication for a day and see how you feel. Cuz I don’t want you relying on the medication, just that alone. Maybe you’re well and you’re still taking medication, who knows. I just tell them that.
Participants described feeling comfortable discussing their personal and social lives with their CHRs because of their community and tribal connections. Over half of CHR clients interviewed spoke about having CHRs who shared their clan, or ancestral lineage, and a few said that this was an important factor in building trust.
I can tell her anything about my personal life. She’ll talk to me about it. I think they’re both like that because in this community, we’re all related. I think = [CHR 4 Name Omitted] = is like my grandma and = [CHR 2 Name Omitted] = is like a cousin sister to me. So if I need to talk, I would talk to them with my health. [So having that clanship really helps.] Yeah. Other than that, some other person I wouldn’t tell about my personal life or problems and all that. [And you feel safe sharing that, like she won’t judge you or those kinds of things.] Yeah, they’re both nice. [Do you usually share things with them?] Yeah, yes I do. I tell them about my love life (laughs).
(Jonathan)
[How was your relationship? Did it change with your CHR in the past year? Okay. You said it was his mom huh? (To daughter)] Clan-wise, yeah. He calls her his mom.
(Shuman)
Participants who felt comfortable with their CHRs were able to find additional emotional support and joy in their visits. One CHR client explained that simply talking to her CHR makes her feel better and motivates her in taking control of her health.
Well, she talks about herself and I told her about myself. Then it makes me feel better when I talk myself, I do this and that. So we talk to each other, like a daughter and mother. [Good] But I can’t talk to my kids like that - they get pissed off, so it’s better to talk to another person. It makes you feel better. When you talk to them, they talk the same way like you do. That’s why she makes me feel better when she comes sees me… Yes. It’s a real help…She was a real help for me to get it right, do okay. Go live and look forward to another day.
(Marie)
Finally, CHRs provided instrumental support by reading their vitals, blood sugar, and blood pressure in almost all cases, picking up medication and providing equipment such as test strips in over half of the cases, or arranging or reminding them about appointments in almost half.
I needed to see a neurologist for my, so = [CHR 4 Name Omitted] = and went and set an appointment for me in = [Location 2 Name Omitted] =. When I need some medication, they would pick it up for me. I’d just call them or for more test strips, they would get it for me. It would save me a lot of time leaving here and going there to pick it up. They’ve been helpful.
I think- At one time, like I said I was kinda, she went and got my, my medication. She went down and drove down and got- I had a refill, had a refill done. So I could get, I had them pick it up. I asked- I was going to go in the next day but then she came and I told her about it and she said she’ll get it, she’ll go down. She called over there first. And then, then, yeah it’s ready, your medication is ready. So she asked, I told her that she worked for the CHR and all that. She went down and got it. That was = [CHR 2 Name Omitted] = the one that….
These findings suggest that CHRs were in a position that allowed them to not only support their clients’ healthy lifestyle goals but also bolster their emotional and spiritual resilience. In this way, CHRs are helping to overcome the chasm between clients and the health care system by providing both the emotional and instrumental support that the clinical team is unable to provide.