Table 2 Overview of the major themes and subthemes with illustrative quotations

Pursuing normality and control

1) Subtheme: pursuing normality

● “It was with the nurse and she said ‘what do you want out of life?’ And I said ‘I still want to be able to drive and I still want to be able to play golf if possible’. And looking at the [information] booklet she gave me, that [CAPD] looked about the only thing I could do but it’s not going to mess my life about any more than I have to. Really trying to keep it at bay. It’s there but push it in the corner.” [35]

● “Yeah, I’m considering peritoneal dialysis because it interferes with your life less. You can do it at night. And it doesn’t interfere with your day... If you do it overnight, all your days are free.” [54]

● “I don’t know what it’s like to be normal anymore, to feel normal.” [55]

2) Subtheme: a search for knowledge:

● “The more information I have, the more knowledge I got. That means I can ask better questions, more intelligent questions … otherwise I didn’t have a chance to process it. ”[38]

● “(…) [I] shouldn’t have to try and read all this medical jargon cause I’m not a—I’m an artist. I’m a painter. I don’t know what this means and that means.” [48]

● “We didn’t take 4 years of Latin. An even if we did, it’s so far back that we don’t remember anymore, and we didn’t have medical. So you got to bring down to the level of understanding for the normal person. If it’s a kidney, call it a kidney. ”[38]

Prioritizing outcomes

1) Subtheme: reaching kidney failure

● “When they say I’ve got to go on [dialysis] then I’ll work it in, because I’ve got no choice. It’s either that or die.” [laughs] [33]

● “It was like a monster kind of waiting and lurking in the dark for me and I didn’t like the idea at all. Being dependent on the machine for all the functions that you were doing naturally since you were born and the machine takes over and there’s no way back. You are not free anymore to make any decisions. If you want to go away it takes so much planning. You are strapped to a machine. ”[56]

● “I’m afraid of receiving dialysis… I want to use everything, which helps me to avoid receiving dialysis.” [34]

2) Subtheme: experienced health

● “If I’m going to feel this bad for the rest of my life, do I just want to end it now?” [57]

● “It’s a strange kind of tiredness, quite unlike anything that I’ve had before. You can’t really describe it … it’s weird. You just sit down and, phew, you’re gone [fallen asleep]. It’s weird, strange. ”[53]

● “My thought processes seem to be slowing ”[53]

3) Subtheme: social life

● “Cultural too, is the male working thing, the identity of working and being a working man, and the stigma of being sick and on dialysis and not being the tough guy ”[58]

● “The nephrologist is more about making sure the kidney doesn’t fail or making sure I live as long as possible, whereas I’m willing to accept some risks for happiness—having a family. ”[59]

● “I can be afraid if I think about the future … Will he still love me if I have more restrictions? And can we stay partners on equal terms? “[51]

4) Subtheme: work and economic productivity

● “There’s no way I can go back to working where I used to, there’s no way I can stand on my feet for 8 h doing the heavy work I used to do, there’s all the retraining and going back into the workforce, plus trying to work out how I’m going to pay my bills, my rent. ”[55]

● “Doing a lot of things that I was able to do six years ago, I can’t do that and that’s really frustrating, you know, for me because, as my kids know, I worked all my life. I managed a restaurant for 37 years and supported 7 kids … and now I can’t work. It’s frustrating that I want to go out there and work, do something to help keep me going, and my kids, and I know I can’t … Mentally it’s like ‘Why am I here if I can’t do anything to help?’ “[42]

● “My colleagues and employer don’t know that I have CKD. I’m afraid they will use it against me” [51].

Predicting the future

● “He said to me ‘Look, you’ve got a GFR … falling, it is at 22 now which means that you’ve got about a year left before it’s dialysis or transplant.’“ [10]

● “At the moment he’s sitting on the, on his, hands and saying ‘Well, it doesn’t look like it [dialysis]‘ll be happening until sometime next year.’“ [33]

● “The notion that it will be more difficult in the future is always there. I may not have many problems right now, but the sword of Damocles is always hanging over my head. ”[51]

Realising what matters

● “For the last year and half, I’ve been asking my doctor to change my medications so we can have a child and they keep saying ‘next appointment, next appointment.’” [59]

● “There is really nothing to discuss with the doctor. [...] the doctor is wary and persuaded me to accept dialysis [...] all they would do is to encourage me to go on dialysis and tell me the benefits of dialysis.” [60]

● “He [name of nephrologist] brought up dialysis and was asking me whether I want to have peritoneal dialysis or haemodialysis. During that conversation we seemed to conflict with each other, so what I thought was one thing, he said, ‘No, no, no, that’s not what you want…’ and I’m like ‘No, I’m pretty sure I want that’.” [10]