Table 4 Patient barriers and facilitators

Knowledge

“we’ll say my potassium’s ok or my calcium’s alright, my Hb, my iron…we’ll compare like 'oh what’s yours like?’ Sheffield7patient

“they come in, get all the bits and pieces they need…they seem to cope alright with it so I take it does work” York5patient

“they just want to turn up and switch off” York20patient

“you didn’t know what to do with it anyway so basically you just laid here and you didn’t know, you now thinking god what’s happening to me…then we started talking to each other…so we started asking questions with each other, and so it opened it up…whereas before you used to come and you’d say good morning, turn your telly on and go to sleep.” Sheffield8patient

“you’re not just laying there wondering what’s happening” York5patient

“everybody’s different and their views are different and perhaps how much information and processes they can manage at once” Sheffield3patient

“some people think…you’ve got to do everything and we’ll say to them 'no you haven’t, you do what you want to do and what you’re capable of doing’…I don’t want to be forced into something what I don’t want to do…I’ve got no intentions in doing it at home you know” Sheffield8patient

“it’s quite empowering isn’t it to be able to do it you know, sort yourself out, you know and I’m not somebody who sits around you know” York6patient

“although I gave insulin to myself, because the needles were different you know and thinking am I gonna get it in” Sheffield3patient

“all the other things about being on dialysis brings you know, osteoporosis and system not working properly, problems with bowels, sickness, cramp, you know there’s so many things that you have to deal with apart from having to come here three times a week” York6patient

“but with shared care there’s not going to be somebody there all the time is there?” York20patient

“A unit’s opening up next door hopefully where we’ll be able to come and go more or less when we want, is that what it is?” York20patient

Beliefs about capabilities

“they don’t pressure you to do anything what you don’t want to do” Sheffield5patient

“I used to think gosh that’s good, I’d like to do that, to be independent” York12patient

“elderly patients…they’re frightened” Sheffield3patient

“a sharp needle you feel it go into you, but once you’ve got this button hole done, the blunt needles just slip in…it’s like putting them into butter, you know it just slips in really, really good.” York1patient

“it makes me feel I’m in command, more responsibility” York12patient

“panicking…am I doing this wrong” York20patient

“don’t know 3 to 6 months” York1patient

“there’s enough problems with the nurses doing it without you know the problems that I or anyone might cause to themselves” York15patient

“I just stopped… can’t be bothered anymore” Sheffield10patient

“I’m a technophobe, and that’s like a computer to me you know…but once you get used to doing it and you have a sheet to follow.” York1patient

“when I saw you doing your needles I thought 'oh my god, am I going to have to do that?’…she says 'no, no, no’…and then a couple of month on, maybe because he knew he didn’t have to do it, he started doing it for his self” York5patient

“I’m always putting my long lifespan of my fistula down to me needling myself, I’ve always thought that’s got to be why, cause not many people get 16 years out of a fistula” Sheffield7patient

“a bad day when I come in and I just think 'just let me get on that chair and let myself go to sleep’” York6patient

“if someone’s 80 something you know you wouldn’t even go there” York6patient

“Hell of a lot to learn” York6patient

Skills

“you know what to look for…if your venous pressure gets too high…it’ll set the alarm off..it could be a kink in the pipe…tape could’ve came undone…your needle might just need pulling out a little bit.” Sheffield5patient

“no respect to the nurses are doing different fistulas all day long aren’t they?… it doesn’t hurt when I put them in, there’s no pain whatsoever, I don’t feel anything, I know the tender spots and I know the bits that hurt” York5patient

“put needle in myself but I couldn’t do it” Sheffield11patient

“I thought there’s no way I’m gonna even attempt it…they said about this button hole technique where you use a blunt needle…same track all the time, same site, obviously it scabs over, but it’s a bit like a pierced ear…just slide into it…they said you can’t bump it…it won’t go anywhere…I get on with it fine” Sheffield5patient

“I don’t like the idea of working with one hand you know like when you’re blood pressure with one arm…it’s frustrating” York6patient

“would like … but I can’t read or write” Sheffield11patient

“she did the actual tunnelling, she made the button holes to begin with sharp needles…for a month…then she said 'right, now we’re going to put the blunt needles in’ she said 'and you’re going to do this yourself’, and I did and it was very easy.” York1patient

“I’d love to come in and line 10 machines…cause that’s how you learn…when you’re just doing one every so often you don’t remember…but you can’t do that cause of hygiene” York6patient

“she held it with me because I have these shakes sometimes, but that’s stopped me from doing it” Sheffield11patient

Environmental context and resources

“this year I went across…it was a private place…the Dr said to me 'no, I’m sorry we don’t do button holing’ so I said 'well I’m sorry I do’, because the nurses had given me all the needles and I was adamant I wasn’t going to lose these cause they were so good…he said on your head because of infections…the thing that amazed me was every morning…I had a crowd of nurses round me, they were all interested to see you know how it was done” York1patient

“I try to disassociate dialysis with my life and the less time I can spend here the better” York5patient

“not safe..if anything happens I would prefer to come to the hospital” Sheffield11patient

Interviewer “before you got involved in the shared care, would you have looked at the folder at all?” Participant “no, no, I always thought that was purely what the nurses used” York1patient

“it was quite daunting walking in the first time…you don’t know what’s happening and everyone’s looking at you, get these needles out” Sheffield6patient

“you’ve got fixed times for your transport obviously, well you come in, a nurse puts you on the machine, your transport turns up and you go home, there’s no messing about with anything anymore” Sheffield10patient

“I think I’d be more isolated at home” Sheffield8patient

“I think I’m past that, I just want it now, I want a kidney” Sheffield6patient

“because if something goes wrong I’ve got the nurses on hand, whereas if I was at home and something went wrong he would have to lift a phone or do something to the machine and I think he would panic, and lose his breath…so it’s better to come in” York1patient

“the idea is to reduce the numbers of nurses is it?” Sheffield6patient

“I wouldn’t want to spend that time setting that machine up” York15patient

“with all the messing about…so I’d had seven hours messing about with this one way or another, waiting about, hanging about, it’s not pleasant, it’s not nice” York6patient