Table 5.
Illustrative quotations
| Theme | Illustrative Quotation |
|---|---|
| A new dialysis–dependent self | |
| Changing identity | “I think dialysis is a detriment to maturity. I think you are placed over and over again in a dependent situation where you re-enact childlike relationships. From the machine to the staff, to the medical system, to the system that makes it all run, you know.” (31) |
| “There are a lot of things that we (dialysis patients) need to sacrifice. You cannot work, you cannot offer anything to your family.” (35) | |
| “Looking at their (established patients’) scars, I feel so scared. How do you expect me to go out in the public? I hide myself.” (37) | |
| Effect on family roles and relationships | “My wife would have preferred it in another way. To go out, to go to a tavern, to be able to go on holidays. It’s not only that you suffer, but you also make others suffer.” (35) |
| “I don’t want to start leaning on [my daughter]…I don’t find it easy, to be honest…I don’t want to make her life a misery.” (38) | |
| “I think that I am going to give a lot of trouble to my siblings, giving a lot of problems to your loved ones. They have to take time off (work) to do this and that for me…so I became a burden.” (37) | |
| Changing social world | “A lot of times your friends, your so-called friends, they don’t really have time for you, you know, ‘cause they go on with their own lives and you know you’re sitting around feeling tired. So that’s not a good feeling. Lots of times friends drop you when you can’t do anything.” (25) |
| “I cannot meet my friend John any more. Because I cannot eat, I cannot drink, and I think to myself if I go out with John who drinks and eats, I will be tempted and eventually drink. And I did this once, I drank three ouzos. And the result was I had to go home and collapse. So I cannot socialize with him.” (35) | |
| “I got used to coming here and it is necessary for me to come, to meet with these fellows and the staff.” (35) | |
| Changing future | “Now there is a lack of purpose…I have nothing to look forward to at the moment.” (37) |
| “How long will I live? It was the only thing I thought of—how long could one live with dialysis.” (32) | |
| “It has a hold on my life since I can’t plan ahead and say, ‘this is for sure.’” (31) | |
| A restricted life | |
| Constraints on time and diet | “Time is the worst part of it, because it takes too much time. From you, that is. You can’t do anything spontaneous, you become very tied down.” (33) |
| “If you are supposed to really follow that regime, I would rather cut a couple of years off my lifespan…There is almost nothing you could eat…I certainly don’t become worse/more ill because of that…With moderation of course, you see, it can’t be like you can’t take even a slice of bread with cheese or two during the day…That much I don’t think it means…I don’t say that I just don’t care, you see, but they observe those test reports then…phosphate and…calcium, perhaps, but then I get scolded a bit…They say that now you have to pull yourself together; this doesn’t go well. Now you destroy your years…but this is my choice…My wife was really confused in the beginning and just tried to take care and follow those lists. ‘We don’t do it,’ I said…I am not able to do this.” (24) | |
| The effect of symptoms | “Itching is…the way it’s been for the last couple of years makes me so depressed, you couldn’t understand. I almost jumped the other night—from the balcony. If it hadn’t been for my wife, I would have jumped. That’s how tired I am of it.” (33) |
| “This disease is very difficult, and no matter how hard you try, no matter how much strength you have, you will be weighed down with anxieties and get depressed. You are losing your self-control. I personally very often feel depressed, because I asked ‘why me?’” (35) | |
| Loss of choice and freedoms | “It is mostly a mental strain. After all, I have no pain then, but one feels like being put a little bit into prison, if one could use an ugly word like that.” (24) |
| “Having to be here 3 days a week is what I call a ‘command performance,’ no sooner do I start feeling better then I’m anticipating coming back again the next day. But there’s no choice, no modifying the experience.” (39) | |
| Regaining control | |
| Gaining own expertise | “Now when I understand the machine, what the machine really does, I can go in and change the parameter…that makes me feel like I am contributing to my treatment.” (34) |
| “You’re the doctor. I’m the patient, and let’s see how we can work this together. I want to be an influence on that decision. I want to help make the decisions, because I think I have a lot of input on my situation.” (26) | |
| Accepting dialysis dependence | “It’s a very different life, but I am willing to live it. I am willing to face whatever this different life brings about. I’m very aware of the drastic change in lifestyle…I cannot go back to the way it used to be…It’s like I have—I’ve lived two lives. One life when I was healthy and then this life with this illness.” (31) |
| “So I’m just really, really lucky, or I could be pushing up the daisies.” (38) | |
| “When I got sick and started with hemodialysis, I felt that I had to use the time. I started to study, and therefore, I have a life outside the dialysis. Now the dialysis is just a little part of my whole life, and the other is with my studies, that is the real me…The dialysis is just something that I do in between.” (34) | |
| Adjusting and accommodating dialysis | “It’s hard at first but you get used to it…if people are socializing and you can’t maybe have as much as them or…you can’t do what they are doing…but you have got to be grown up about it and realize well it’s one of those things where you have just got to put up with so…it’s hard but it’s…you just have to get on with it…‘Cause I’ve been doing it for so long now…it’s more natural now than if I was, you know, not ill.” (36) |
| “I think you’ve got to be realistic…I’ve just got to readjust my life and do what I can.” (38) | |
| Relationships with health professionals | |
| Information sharing | “[Doctors] think you don’t know what you are talking about. You’re not supposed to question.” (30) |
| “I want more information…Nurses do not tell me anything, other than the blood percentage…They could talk more about the illness and how it develops.” (24) | |
| “I can’t fathom it. I can’t look at my kidney, put it in my hand, and examine it myself. Why do I have to be on dialysis? What is kidney disease? How much of it [i.e., the disease] do I have to have before I need to be on dialysis? I ask these questions, but their only answer is to tell me to be here, to take water out of me. But that’s not an answer! I’m left dangling.” (39) | |
| Building relationships with professionals | “When I first started the dialysis, I was crying a lot. It was the head nurse who helped me to go through it, and she was there for me listening to my problems. Without her, I couldn’t continue.” (35) |
| “The personal chemistry must work for me…otherwise they are not allowed to canalize my fistula…[laughs]…I must have faith in that person, faith is very important.” (34) | |
| “They make one round, we only have it on Tuesdays, but then, we also go through everything once a month with the nurse and the doctor, that’s fantastic. That creates more of a personal relationship, there’s a little chatting about all sorts of things as well, at least when I'm sitting there.” (32) | |
| Balance of power within relationships | “You’re [doctor] not listening to the whole situation. You took a piece of it, made your analysis, made your decision, and you’ve moved on. But I’m still here living with whatever you left me with.” (26) |
| “If you come in and need a lot of drainage (ultrafiltration), they say ‘why do you need so much’ and start nagging me. Well, I know that I’ve been bad, but it’s impossible to stop yourself when you’re thirsty. I’ve told them ‘would you last on 5 dl a day?’; then they’ll tell me ‘but we’re healthy!’ As if I didn’t know.” (33) | |
| Seeking expertise | “I get so nervous when there are new nurses that are supposed to learn…they really don’t know how to do it, so they talk to themselves to remember, and then you get nervous yourself. Then I start to think: do they really put the tubing right? So then I get a little bit worried.” (34) |
| “But the fact of the matter is that if someone can’t get my needle in place—which actually does happen. Some people can’t do it at all. But then there are those who get it right every time.” (33) | |
| “In my experience, you don’t see many doctors…Most of them, I must say, they all know their work, they’re all good…if you can get them to come in to you.” (30) |