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. 2023 Aug 15;6(8):e2328944. doi: 10.1001/jamanetworkopen.2023.28944

Table 2. Qualitative Themes, Subthemes, and Illustrative Quotes.

Themes and subthemes Quotes (participant ID number)
Home dialysis misinformation and immigration-related barriers to care
Cultural stigma of dialysis
  • “Sometimes they stare at me. About a month ago I went to Mexico for two days to visit my relatives, and automatically, as soon as you arrive, it’s nice, but it’s sad. The first thing they say to you: ‘Oh, how are you, keep fighting’ and so on. But I’m fine, I’m making an effort. I mean, they think that because I’m on dialysis, I’m already ah, I’m already sad, I’m dying, this and that.” (22)

  • “People make fun of dialysis people. And they make stupid jokes about, you shouldn’t live because you have a dialysis. You’re not normal like us.” (20)

  • “Over [in Mexico], since there are no machines, like the ones they have over here, the ones for home dialysis like mine, yes. Because over there, unfortunately with the machines, power isn’t…it’s not safe, there are power outages all the time.” (22)

  • “There is a lot of ignorance in the Hispanic community about this dialysis thing, I talked to my neighbor, and another friend I have, who were already on dialysis before me and are Hispanic. They are very afraid of getting infected.” (16)

Misinformation regarding chronic disease care
  • “The truth is that we Latinos are very close-minded. We are too close-minded. So, when we get to that point, the Latinos don’t know anything. So, their world collapses, they think they will draw their blood and who knows what they will do to them. So, as we are not informed, we find it difficult.” (11)

  • “We simply need courses or someone to explain it to us, even if we don’t have relatives, but there is education, so that everyone can support us.” (22)

  • “I think that some of the problems with the Hispanic people and dialysis would be the lack of knowledge about dialysis…before I had a problem with my kidney, I never even knew what dialysis was. That’s just not something that had ever crossed my path.” (21)

  • “I identify as a Mexican American. I actually do have connections with my community and my culture. And I think that there’s a lot of unknowns for our community. I think people who do get on dialysis really don’t know a lot about it…a lot of my community is not as educated as I am. And so, they might need a lot of more detailed oriented kind of guidelines on how to really understand what it means the impact that it has on our life.” (27)

Lack of health insurance due to immigration status
  • “I have insurance now. The only bad thing is that when I went into the hospital the first time I didn’t have insurance and I’m paying an expensive bill.” (18)

  • “The billing part of it has been difficult for me. I do work, so I have insurance through my work and then through my job and then I also have Medicare. So, getting those two, my [private insurance] and Medicare to coordinate in order to get my bills paid, it’s been difficult.” (21)

  • “I had difficulty when I started with dialysis. I was swamped with debt with the hospitals…the state doesn’t give you anything.” (11)

Limited dialysis education
Lack of predialysis care
  • “I thought it was going to be something like when you get sick, you take medicine until you get better and that’s it, but this is not like that. It’s something that I have to get used to. And they helped me with that. To understand that it’s not to get better.” (25)

  • “I just went to the doctor and they told me that my kidneys were not working.” (7)

  • “I found out about dialysis until I got sick, because since you’re not going through the situation, you’re not interested, until this happens to you.” (19)

  • “Back in Mexico the doctor suddenly told me, ‘Your kidneys are working at 70%.’ I neglected myself because I didn’t feel bad, but suddenly I started to swell and I felt worried. I went to get checked and they were pretty damaged.” (9)

Nonnephrologist education
  • “My dad was also in dialysis. Automatically, they put him in home dialysis, so I saw that it was very convenient. I say, well, dad’s 80 and he can do it. Why can’t I? That’s when I decided to look into home dialysis.” (27)

  • “I found about NxStage home dialysis on my own…nobody, my renal doctor, my main doctor, nobody knew about NxStage. I found NxStage in the internet and nobody knew the NxStage.” (23)

  • “The doctor who told me about this wasn’t a specialist, it was my primary care doctor.” (14)

  • “They told me to go to a dialysis talk…they explained to me what the dialysis was about. And the connection you had to dialysis.” (7)

Shared decision-making
  • “They didn’t give me any [dialysis education]. I was one of the ones that had a very bad experience. They just sent me into a center, sent me up into a center, my doctor, my renal doctor and that’s it.” (23)

  • “When I started dialysis, I was going to [another hospital], and I guess they didn’t give me an option because they didn’t know anything about peritoneal dialysis back then.” (27)

  • “The education at all was so minimal. The only option there was the blood one.” (20)

  • “It was decided (by the doctors) because option they told me there was no room to do hemodialysis. There was no other option.” (2)

Maintenance of home dialysis
Equipment issues
  • “It’s a hassle to travel with a machine to Mexico, that’s why I never took it again after two tries. I feel kind of stuck over here and pretty much all the family is there.” (23)

  • “[My wife] was worried about the poor hygiene of my job. Because I am moving earth, rocks, things like that.” (15)

  • “You have to have a specific place so that you have everything, all your supplies they give you. It has to be…a cool place, and I was like, my God, and now what? I have a room in the back, that room was emptied and we used it to store all that, and that was one of the things that worried me, because I said: And where am I going to put all that? And my room was far from the bathroom, so I had to switch rooms with one of my children and he gave me the room that is in front of the bathroom, because the machine must be connected to the bathroom drain.” (19)

  • “[My daughter] does it for me, because I can’t see, I can’t see how I can get connected there.” (3)

Lifestyle restrictions
  • “I spend all my time doing it, because I do it four times a day, but I think I don’t qualify for the machine, according to what the doctor told me.” (6)

  • “Dialysis at home requires cleaning your room, washing your bathroom, having your personal hygiene, eating very well. There are several things where your family or the people you live with have to help you.” (16)

  • “Because I carry fluid every day in my belly, it’s—I’m not allowed to be picking up heavy stuff. It does change your lifestyle…there’s restriction. You need to take care of yourself.” (27)

  • “The bad thing about peritoneal is you need to do it every day and it takes too many hours. It’s ten hours a day that I’m hooked up to the machine.” (2)

Anxiety about complications
  • “So, it was really hard for me…I was like, ‘I’m not going to be able to, I’m not going to be able to.’ But then, I said, ‘I have to be able to.’”(12)

  • “Whenever I started doing it, I got very nervous, I mean, nervous, nervous, nervous. And I was starting to do it and I calmed down. And now I feel normal. In other words, I haven’t been nervous, this is easy for me.” (1)

  • “And the concerns were infections. It was very easy to get an infection if you didn’t do it well or if you didn’t take care of yourself as they said.” (15)

  • “[I fear that] something might happen…I think that’s the…the first thing I’ve heard. What if something happens, or I don’t have anyone to help me.” (14)

Improved lifestyle
Convenience
  • “The advantage for me, really, is that I don’t leave my house. I don’t have to rush every day because I have to go to the clinic.” (12)

  • “With the other dialysis that they offered me as well, the option they mentioned of going to the clinic to do the dialysis, well, you are kind of tied to them all the time.” (15)

  • “I think there are just advantages of being able to do it at home. You get home from work, you take a shower, you eat, and then you connect yourself to the machine. You can watch TV. Go to the bathroom. You can do your stuff in your house. After you finish, you go to bed. The next day you wake up in the morning and the machine is done, you disconnect and go to work.” (15)

Autonomy
  • “I can go to the bathroom, I can sit down and watch TV, I can talk to my friends. It’s very nice. I don’t have to go to the hospital and stay there.” (20)

  • “The house is 100% better, because in the house I had about ten hours to myself. I worked, I traveled, I ate, I drank water, I enjoyed life.” (16)

  • “Just being able to be myself and be able to continue my lifestyle as I currently live it. I didn’t want any restrictions to inhibit my ability to, you know, really work on my health really work on my being available to my husband and my two children. You know, just not losing myself if that makes sense.” (26)

  • “One of the biggest advantages is that I have more time with my family at home. Because when I used to go to the clinic, there were times when I had to leave work earlier because I was far away.” (17)

  • “Because my whole family is in Mexico, it’s better for me to travel, that is, I take the things I need for the days I’m going to be there, and with hemodialysis, I have to go to a center and that is more difficult for me.” (4)

  • “[In-center] was more restrictive in my perspective, because then I would be going into the office three times a week. And that would inhibit my ability to actually have a full-time job and be able to attend to my job duties, as well as attend to my health issues. So, when I looked at peritoneal, that just seems the most logical option for me.” (26)

  • “I have more options to work longer. Because when I used to go to the clinic I wasted a lot of time.” (18)

  • “The convenience of being able to keep working was good. To have a little more normal life.” (8)

Physical symptoms
  • “When I was going to the clinic for dialysis, I would suddenly get out of there dizzy and with the dialysis at home I woke up normal.” (1)

  • “With hemodialysis. I felt that it left me without strength, that it left me with nothing. I mean, I left wanting nothing, nothing, nothing, nothing, I was very tired. And with the [peritoneal dialysis] one…I almost do everything as I normally would. I feel good, I feel rested, I feel comfortable. The only thing is that I have to be connected at night, but [peritoneal dialysis] is a thousand times better.” (22)

  • “When I was going to the clinic, sometimes I was very tired from dialysis and the next day I had to work. Sometimes I didn’t feel like it. Now with home dialysis, I don’t have that.” (17)

Dietary flexibility
  • “I ate more strictly before, and when I started [home] dialysis, I was able to eat more things that I couldn’t eat before…it was forbidden for me to eat bananas, mangoes, avocadoes, everything that has a lot of potassium, and that is what I like the most.” (1)

  • “Food, everything, that is potatoes, beans, guava. I mean, there are many of these things that I couldn’t eat, and now I can eat, but a little bit, not much.” (17)

  • “Sometimes they still tell me that here, I should consume less potassium, fewer bananas, cheese, milk. The nutritionists tell me what to do, and I do what she says. Try not to eat so much cheese, milk, yogurt, or tortilla.” (13)

Support
Family involvement
  • “I went there by myself and well when I got home I explained it to them and we shared thoughts. And so, we decided that it, the peritoneal method, well, was the best option.” (4)

  • “They went with me, my daughter and my granddaughter. That way if I didn’t understand something we can talk about it. And we did talk about it right there and they agreed with my decision they said they were a good decision the one I choose.” (25)

  • “My mom, she’s the one that helps me with, once I prep the machine, get everything going, then it’s time for me to connect the machine, she’s my person that helps me with that process.” (21)

  • “I’ve had my daughter’s support. If you don’t have this support, it’s also very difficult.” (14)

Relationships with staff
  • “They are great. I have never been left with a question about anything. They answer everything. When I started, the doctor was very nice and told me how to get clean. The nurse, the social worker, the nutritionist looks for things to eat.” (8)

  • “I was thinking that the support they give you is really helpful. Where they tell you, ‘Okay, I support you in this, so that you can achieve it.’” (12)

  • “It’s like they become part of your family. You arrive and they treat you as if they had known you all your life, and they share things with you that—as if they were a part of your family. You can – they listen to you; they’re always attentive. For example, every time you go to the doctor, the social worker sees you, the nutritionist sees you, the nurse sees you, the doctor sees you. And if you need to talk to someone, you just tell them I need to talk to someone and that person shows up there in the office, and you can ask the questions you need to ask.” (19)

  • “The experience is very good, whenever I talk to them, they always get back to me, whatever I need, they are always there.” (18)

Self-efficacy
  • “When I contracted the disease, I didn’t want my life to be over. So, I was obviously in a mindset to fight. I’ve always had that attitude in most of my life, because I’ve experienced being told no more than yes or obstacles to overcome rather than just the nonchalant response.” (24)

  • “I had to research it and ask for it and tell her (the social worker) … and she said ‘Nope. Nope, you can’t. There’s no way, there’s no state that’s gone accept you like this, so you pretty much stuck here you can’t, go nowhere’ and she closed the door, yeah. I had to do everything myself.” (23)

  • “I did all by myself. I did research. It took me days to find out that I love that dialysis. That it wasn’t going to be painful. And I saw all kinds of doctors doing it. So, I said, I want to be in it.” (20)

  • “The social worker, who found this for me, she gave me all the information and I investigated it, because I am a person who investigates everything.” (19)

Language concordance
  • “The machine that I had, you press a button and it tells you step by step what to do, and it’s in Spanish.” (17)

  • “I have a book that shows you step by step what to do…I have them in Spanish, they are like guides.” (1)

  • “They always have a translator, and it’s very nice that way.” (9)