Table 2.
Excerpts from the analysis
| Class 1: illness rhythm | CKD monitoring | Excerpt 1 | “I hope that on the 30th, when I go see her, she doesn't say to me 'We're at that stage'! To say to you, uh, so yeah. Um. Bah, she makes me anxious each time I go see her. Each time I'm waiting for a result, each time I go see her.” Tony, age 54 |
| Managing an illness among others | Excerpt 2 | “The arthritis in my hands worries me more than my kidney insufficiency! Yes! Because … < coughing sound > at the end of the day, at the end of the day, pain comes.” Guillaume, age 55 | |
| Excerpt 3 | “I had a blood sample and then I saw my general practitioner the day or two before … seeing the nephrologist. And in the results that, that there were, there were numbers that were very very bad. And that was really a blow to my morale. And then two days later, I saw the nephrologist. I talked to her about it. She said to me, 'But that, that's a rate that's part of the analysis but we never do anything about it!' “ Samuel, age 54 | ||
| Excerpt 4 | “I go see the cardiologist, I go see the diabetes specialist, and I go see the nephrologist.” Monique, age 82 | ||
| Class 2: considering dialysis | Dialysis modalities and day-to-day life | Excerpt 1 | “Uh I know that there are people who do dialysis at home, uh, who spend the night with a machine that uh do the session/purification purifies the blood of its, its toxins.” Joël, age 82 |
| Excerpt 2 | “Peritoneal dialysis at one's house, eh, well, at home, uh I think that it avoids spending hours in the hospital, so to be able to stay home, but under what conditions?” André, age 65 | ||
| Excerpt 3 | “I don't know, I'd like to opt for dialysis at, at night. So yeah, it's that.” Adèle, age 69 | ||
| Patient education and treatment choice | Excerpt 4 | “I am pretty much aware of everything and, not all of course, I'm pretty much up to date, so yeah. Well, uh, good, he explained to me first, how things were going and he sent me to take some classes, and in those courses they taught me the different systems of dialysis and the possibilities I had.” Dimitri, age 69 | |
| Excerpt 5 | “I don't know how it goes, but it must certainly be very aseptic, anyway well, both systems have their advantages and their disadvantages. I know, I think, anyway, that the system with dialysis in the arm, uses up the veins more, according to what I've read.” Pedro, age 56 | ||
| Excerpt 6 | “You have to go to the hospital, I don't know anymore if it was 2, 3, or 4 times a week! With some, there! It's a huge constraint! Huge huge constraint!” Samuel, age 54 | ||
| Class 3: family and transplantation | Talking about the illness | Excerpt 1 | “I don’t tell my mother all of it, to not bother her too much with it. Uh, and then you have to have some privacy, so I am not always going to recount what I have, what's well, what's not well.” Jérôme, age 61 |
| Excerpt 2 | “Everyone turned their back on me. So uh well I don't talk about it. No, no I don't see anyone anymore.” Judith, age 61 | ||
| Excerpt 3 | “But otherwise, with the family, my nephews, all of that, everyone is, I have cousins who know, my sister-in-law, etc.” No, no among us, it’s ok, we talk about it easily. But not with Granny” Anouk, age 66 | ||
| Talking about transplantation | Excerpt 4 | “[About a transplant from a living donor or a deceased donor] I have no brother or sister, mom is a little too old. 80 years old, she's my mother so, good, an 80-year old kidney, knowing that she's sick… So a deceased donor, yes.” Paul, age 61 | |
| Excerpt 5 | “My son did them [the predonation examinations] and he's compatible but I don't want to. No. No, he's too young, he's 25, I don't want it, he has his whole life in front of him.” Nicole, age 52 | ||
| Excerpt 6 | “With my husband … we talked about it. I said to him: 'You know, it would be good …' and all, and 'ooh la la' he said to me, 'but wait', he says to me 'to give a kidney but you realize, after uh', so it's these things you see, you talk a little in a vacuum, you don't really know because uh he tells me 'but you know that if I give you one of my kidneys, if of course, I'm compatible, if I give you one my kidneys,' he says to me, “to live with only one kidney, it's uh, it must not be easy.'“ Christine, age 61 | ||
| Excerpt 7 | “It's not more complicated. It's something else. First, someone has to die, and they have to be compatible. And well, I have no desire for someone to die to save my life.” Ezra, age 60 | ||
| Class 4: disease, treatment choice and introspection | A “normal” life | Excerpt 1 | I don't feel sick, I, for me, I'm not sick, in fact.” Audrey, age 65 |
| Excerpt 2 | “Pff, what I'm living < dealing with > badly, it's the fatigue. The impression of being, uh, passive. Anouk, age 66 | ||
| Excerpt 3 | “That doesn't bother me in my life! I find myself, in quotes, uh “normal.” Céline, age 50 | ||
| Excerpt 4 | “I don't know. No one knows, and no one is able to say really how it is going to develop! Especially, to say to yourself for a moment, uh, bah, all the uncertainties around a transplant, since I, I myself would like to avoid dialysis at any cost!” Cassandre, age 46 | ||
| Excerpt 5 | “Pff, well, I don’t want to live like him. But I’m way younger than him, my dad died when he was 80, 81 uh pff. I have time to see this coming. Haha.” Abby, age 61 | ||
| Avoiding thinking about CKD | Excerpt 6 | “I try not to think about it, I don't want to anticipate what's going to happen. It will already be, uh, yeah. Uh complicated, when the time comes. Céline, age 50 | |
| Excerpt 7 | “I don't think about it. No. Bah, it's a little like a sword of Damocles, so, and I say to myself, when is it going to fall?” Cassandre, age 46 | ||
| Excerpt 8 | “Still, it's one of those things you think about, anyway, I'm not going to tell you that I'm completely uh ignorant of all those questions and that I totally never think about those questions.” Ginette, age 73 | ||
| Excerpt 9 | “From the perspective of a good state of mind, I try to be careful about a lot of things, my meals, stuff like that.” Ginette, age 73 | ||
| Excerpt 10 | “I know that it's going to be very complicated for me to manage. Um, uh I, my morale is going to be very beaten down.” Céline, age 50 | ||
| Treatment choice and acceptation facing research participation | Excerpt 11 | “If it continues like this, it's fine. I sleep well, I eat well, I walk in the woods a lot.” Colin, age 80 | |
| Excerpt 12 | “I have trouble accepting that uh that one day or another I might have to start dialysis! Céline, age 50 | ||
| Excerpt 13 | “It's not easy to answer this question because it's true that I realize, well I realize, yes, that I haven't asked myself them really.” Michel, age 70 |