Table 4 Quotations from interviews with ESRD patients and their family members about barriers to treatment

Limited medical coverage

“Personally, I would like the government to support the costs of these expensive diseases. It doesn’t make sense that they support the costs of diseases in which you don’t spend much. One of those diseases, you can pay for, but expensive ones like CKD, well, those you can’t pay for.” (P8 male, 39).

Economic effects

“… well, the truth is I don’t have the money for the medicine, only for what they give you here [in the hospital], because the truth is I don’t have money for the erythropoietin, it’s super expensive! Or sometimes the antibiotics that I have to buy for him so that the catheter doesn’t cause an infection, well it’s very difficult to buy those, because I can either pay for the hospitalization or I can pay for the haemodialysis.” (F14, female, 52).

“I work in the fields, and well, that’s work in quotes because just now I’m not working. I’ve set aside my work to be here with her [the patient] and well, this is leading us to ruin, because sooner or later I’m not going to have enough even for transportation.” (F9, male, 60).

“I am a street vendor. I sell little bags of candy to be able to pay for my daughter’s treatment, that’s why I’m here at the hospital—I spend entire days here in the hospital—to complete the procedure to admit her here, to complete the procedure to get her out, to make the payments; for all this you have to be here the whole day, so I don’t have a job. Sometimes it’s very difficult because, well, there’s nowhere to make money …” (F14, female, 52).

Interruption of treatment (Discontinuity/Intermittence)

“In fact, lately he’s been very bad, and has swollen up more frequently. They told him two [haemodialysis sessions], but the truth is we just have enough for one. That’s why he’s been so bad, because we haven’t been able to make it; but for now, we don’t have enough for the two [sessions].” (F13, female, 38).

“… my father is my economic support … I had my three haemodialysis treatments, and I dropped one, because I saw that he really couldn’t [pay for it]. Yesterday the doctors told me that I need that [third session of] haemodialysis, but little by little my body is getting used to two...” (P17, female, 32).

Wait times and administrative procedures

“I left [Puebla, a state about 140 km or 90 miles from Mexico City] at 4:00 a.m. and I arrived at a quarter to 8:00 a.m. … even then there was a line to get a ticket [for patients to be seen]. The woman [hospital staff] told me to get there earlier, but I can’t come earlier because I don’t have anyone to give me a ride at 3:00 a.m. It’s not because of laziness.” (F7, female, 54).

“… the main thing I need is faster services so that it doesn’t take so long, and that they simplify the administrative procedures more, because they send you from one place to another and back again and then downstairs. I mean, you’re bouncing around …” (P4, male, 51).

Lack of information about the disease

“What is renal insufficiency? I get what it is in general terms, but I wish they would tell me what my daughter has or will have; that I don’t know. We don’t know any of these things … They say that [the disease] is lifelong; but how long is that? How long does a person with renal insufficiency live? How can we fight this disease?” (F9, male, 60).

“I think we need to research more, to understand this disease more thoroughly, [such as] how to take care of it and prevent lots of things. They should really orient us about what to do and what chronic kidney disease implies …” (P12, female, 30).

Insufficient equipment, scarcity of materials, deficient infrastructure

“The care is sometimes good and sometimes it’s bad. Sometimes there’s no machines, or they stop giving haemodialysis because the machines break, I mean, yeah, there are a few of these little details …” (P12, female, 30).

“… I wish there were more haemodialysis clinics because there are so many people, but there are almost no machines. There aren’t any places [available] … sometimes they don’t give me my medicine because it’s too expensive or because there isn’t any …” (P27, female, 22)