Table 2.

Selected illustrative quotations

Theme	Quotations
Lacking clarity for self-management
Limited understanding of rationale behind necessary restrictions	Educate us on the drugs, also. Because there are different drugs. She might take a different drug than I do, and that drug is working for her, so I can say it to my doctor, and ask them, what do you think about me taking this drug instead of the drug that I’m already on? (F, patient, 40s, APD, Los Angeles) I want to know the physics, the mechanics behind why it’s going to damage this, and if I’m going to get hurt … that’s what I need to know. So then I understand. Not just tell me ‘you can’t do that’. Why? (M, patient, 50s, APD, Sydney)
Muddled by conflicting information	The dietitian for my kidney says you can’t do this and you can’t do that, and I say hang on, I’m a diabetic. I say this and you say that, which is right and which is wrong? So it’s confusing, I mean, one dietitian says you do this, another one says that, and they conflict. (M, patient, 70s, CAPD, Brisbane) But you get conflicting advice, like [other patient] was saying, banana is bad for you, but my doctor says take more banana, because of the potassium. So, I’d like a better guideline of how much of these to take. (F, patient, 60s, CAPD, Sydney)
Restricted flexibility and freedom in doing dialysis regimen
Burden in budgeting time	Before, I can go out whenever I want. But now I have to schedule every day. The only thing is that I have no time anymore for everything. Every time must be budgeted. (F, patient, 70s, CAPD, Hong Kong) It’s a real pain in the arse to have to stop everything and go and sit down for twenty minutes and do the bag and empty the bag and cut up the box and you think I’ve got better things to do. (M, patient, 50s, CAPD, Brisbane)
Confined to be close to home	The only problem is that I want to plan some vacations far away. I’m not that free to move far away to another state or another country for vacations. For me that’s the biggest thing. (M, patient, 30s, APD, Los Angeles) I was working. I’ve been working for how many years? And just for two years I am not working, so it could be affecting me, staying home, seeing everybody going, working, and I’m at home and staying there doing my dialysis and things like that … It’s like you have to stay home, you have to do this. (F, patient, 30s, APD, Sydney)
Strength with supportive relationships
Gaining reassurance with practical assistance	When I first started, as soon as something little would go wrong I’d ring them straight away … I’m like ‘oh my God, what do I do now?’ I felt really bad, but they were lovely about it. (F, patient, 30s, APD, Brisbane) I made the trip with no hassle whatsoever. The people in the center, they have got lots of tricks up their sleeve, like you know, when you’re doing travelling you find yourself in all sorts of situations. Doing an exchange may be something you need to take care of, but the setting is not something that you can choose, so they gave me a couple of tricks up my sleeve. (M, patient, 50s, APD, Melbourne)
Comforted by considerate health professionals	What’s important to me is the relationship with the PD unit, like all the nurses are really compassionate and really get to know me. They sort of help me along through the journey. (F, patient, 30s, APD, Brisbane) I found her very helpful, and we discussed a number of options and really went through it. That eased me into it, because I guess we were all a little bit worried about it. (M, patient, 70s, CAPD, Brisbane)
Supported by family and friends	Realizing that you have to do it yourself, like when you’re not feeling well and then you have to take on all this information, and remember all these things and all these steps, and it can be a bit overwhelming. Just having all that information put on you. The good thing was that he came in with me and seeing how it was done, I think you were there too, yeah. It was good to have them there as well so that I didn’t feel like I was doing it alone. (F, patient, 30s, APD, Brisbane) So they know I have to be back home or I can’t stay out, if I’m going somewhere in the morning or whatever. So they all work with me, and everybody is just like, it is what it is. (F, patient, 40s, CAPD, Los Angeles)
Defying constraints
Reclaiming the day	Since you’re sleeping while your machine is on at night—I do the automated—I’m done as soon as I wake up, and make sure the hours are taken care of. Then I’m free to go about my day just like I regularly did before. So there’s really no change in my activities during the day, basically. (F, patient, 60s, APD, Los Angeles) In day time he’s just like a normal person and does anything he likes. (F, caregiver, 50s, Hong Kong)
Undeterred by treatment	Well, I’m starting to get back into life. It restricted me for a while, but I’ve gotten used to carrying around a bag and a knapsack, and I just go off and do whatever I got to do, so I’m getting, getting mobilized again. (M, patient, 70s, CAPD, Brisbane) We try not to let the dialysis control us, you know. I say forget about the time, you do it whenever, as a family together we go out, but we come back up on the time. We don’t lose the time, but we just, six hours away from the machine, and in that time, that is where we find to put what we want to do as a family. (F, caregiver, 50s, Sydney)
Refusing to be defined by illness	Most people don’t even know I’m on dialysis unless I tell them. Because I don’t feel like it’s a big deal to me. (F, patient, 40s, CAPD, Los Angeles) When I’m doing PD I don’t feel like I’m being a patient, I’m doing it at home. I made it such that even at home, it doesn’t look like a hospital, you know. I just put my boxes into my garage. (M, patient, 50s, APD, Melbourne)
Regaining lost vitality
Enabling physical functioning	It’s good that I had this procedure. With this I will admit feeling good. I can eat better now. Before I lost my appetite; I cannot eat, I became very thin. I lost my weight … I cannot walk … I feel so bad … I feel so tired. But now it’s okay. I walk. (F, patient, 70s, CAPD, Hong Kong) First of all I thank God and the doctors. I had been swollen for about three years, I couldn’t walk, and I ended in the hospital and I thank God again and the doctors that are helping me and I feel fine now. [translated] (M, patient, 40s, CAPD, Los Angeles)
Restoring energy for life participation	Since she’s been on dialysis, at least it’s given her a bit of pep in her step again nowadays. I can see, from my point of view, she was going downhill rapidly until the diagnosis. At least now we can get out and enjoy the grandkids. (M, caregiver, 70s, Melbourne) To me dialysis is like a second opportunity. My happiness is that my children took me to the little cars last weekend. We went and I could enjoy my children and my granddaughter … I had a great time, I enjoyed like a little child, like if I was reborn. [translated] (F, patient, 40s, APD, Los Angeles)
Personal growth through adjustment
Building resilience and enabling positive outlook	As crazy as it may sound, I feel like being on dialysis really pushed me more in life, of becoming independent. Though dealing with my personal issues, my self-issues, it really helped me. It made me see life better by being on dialysis, it’s crazy but that’s how it made me. (F, patient, 20s, CAPD, Los Angeles) PD really hasn’t changed my life, or it has, it’s made me happier, because I’ve made decisions because of it, because I didn’t want to die. With the lifestyle I had when I got diagnosed and started, I thought oh sh*t I’m dying. If I’m going to die, I’m not going to die of this here, I’m not going to die doing this, I’m going to do this, I’m going to do this before I die. (F, patient, 50s, CAPD, Melbourne)
Accepting the dialysis regimen	The hardest is acceptance … I used to think that I wasn’t going to do dialysis. I didn’t want to do that. ‘Why would I want a life where I’m going to be slave to a machine?’ I had to be in treatment to accept that it is life changing. I think we all should go through that. [translated] (M, patient, 30s, CAPD, Los Angeles) I guess the senses came back, you know? Senses came back, and I realized that PD is, you know, to me, now my attitude is different. My attitude is like, I’m doing PD is just like taking pills in the morning. It’s just another set of pills, so I just take it. (M, patient, 50s, APD, Melbourne)