Table 2.

Selected illustrative quotations

ThemeQuotations
Provoking and exacerbating undue trauma
 Fear of the unknown“Chronic actually sounds terrible right, really bad.” Woman, 30s, P, undergraduate degree, US, G1.
“The fear factor—chronic or end stage—something you’ve not heard before, there’s also this fear in the back of your mind. If I go and try and look for that, what am I going to uncover? Do I really want to know? If we just changed the terminology a little bit, it might not be as scary… because you’ve just not heard that term or it sounds quite extreme or severe.” Woman, 20s, P, undergraduate degree, UK, G9.
 Denoting impending death“End means there is no middle ground. Dialysis is buying me time, even today, after 2 yr of being on dialysis means the end.” Woman, 40s, P, undergraduate degree, US, G3.
“When you’re still trying to deal with having a fistula made, having to go to surgery, having to spend time in hospital, having to be away from your family. Trying to deal with that, and you have that “end stage” in the back of your head. It really does compound the feelings of desperation and isolation, especially when you are in hospital for 1 wk plus by yourself.” Woman, 50s, P, undergraduate degree, Aus, G5.
“Start digging the hole… it basically says you’ve hit the end. You’re on the cliff, about to fall off. End stage sounds like you're pushing up daisies next week.” Man, 50s, P, professional certificate, Aus, G6.
“I thought it meant terminal, first time I heard it (ESKD).” Woman, 60s, P, postgraduate degree, UK, G8.
 Despair in having incurable or untreatable disease“To me that means your kidneys are gone forever. No hope.” Woman, 50s, P, completed 10th grade, US, G1.
“The word disease for me implies that there’s a cure, to me. For those 3 yr it was giving me a sense of false hope. We will forever be on immune suppressant drugs with a transplant or we will be on dialysis. There is no cure for us.” Woman, 18–30, P, completed 12th grade, US, G2.
“Once they say “end stage,” it’s kind of like, why not let nature run its course?” Man, 40s, P, undergraduate degree, US, G2.
“It was quite upsetting the first time (ESKD) was mentioned. It’s just basically denial, what does it actually mean? It just feels quite depressing like there’s nothing you can do about it. I never thought I would have dialysis. When it was told to me I had kidney issues I was quite young, it gives no hope to your life. What are you going to do next?” Man, 30s, P, postgraduate degree, UK, G9.
 Premature labeling and assumptions“Predialysis is derogatory. I’m in stage 3. I don’t want someone telling me I’m predialysis because I could change my lifestyle. Right. I mean I could stay in stage 3 for the rest of my life.” Woman, 60s, P, postgraduate degree, US, G1.
““Kidney disease without kidney therapy” is not the best. That’s putting these people who are still somewhat okay for a period of time in a situation where you’re in a chronic situation.” Woman, 30s, P, professional certificate, US, G2.
“It’s probably better to talk about the function that they do have, than what might happen in the future.” Man, 50s, P, postgraduate degree, US, G2.
“(Predialysis) alludes to something that might not happen for that person. It goes back to the whole fear thing. If you’re called a predialysis patient, it’s like oh, is time ticking before I start that?” Woman, 18–30, P, undergraduate degree, UK, G9.
“I would love to think that everybody would not have to go on dialysis, because I can deal with taking tablets. I just can’t deal with being stuck to a machine.” Woman, 30s, P, professional certificate, UK, G10.
 Judgment, stigma, and failure of self“I had a 2- or 3-yr span of a really bad depression after all of those diagnoses, and on top of the depression being labeled with a disease.” Woman, 18–30, P, completed 12th grade, US, G2.
“So the connotation of that word isn’t helpful. Your kidneys fail and so will you. By association, your physical existence is failing, so kidneys aren’t working possibly, kidneys are reducing function might be better because that’s a little more succinct. Separate it from the person. If you’ve got chronic, or I’ve got chronic, kidney failure, it’s a little bit pointed. And psychologically, that doesn’t help, because we’re probably all troubled with depression at some point.” Man, 50s, P, professional certificate, Aus, G4.
“I sometimes struggled with different medical professionals who said to me “oh, you’ve got kidney failure” and it was a bit like, I had done something wrong. I had a bacterial infection and autoimmune disease, and I couldn’t control all those factors but I felt like sometimes when kidney failure was used at me by other people, I just felt criticized.” Women, 50s, P, undergraduate degree, Aus, G5.
Frustrated by ambiguity
 Confused by medicalized language“Doctors don’t have to speak a different language to the patients and their families, they can just spell it out and just say exactly what it is, don’t use doctor jargon, just use words that everyday people can understand. There’s been times when I’m in the hospital with her (my mum) and I’m hearing things, I’m like, “Why is he just not saying it straight out?” Like you’re using all these big words and stuff.” Woman, 18–30, C, postgraduate degree, US, G3.
“Kidney is talking about kidney specifically whereas renal is talking about the overall renal function.” Man, 50s, P, professional certificate, Aus, G6.
“Low clearance is one of them, so confusing.” (Woman, 50s, P, postgraduate degree, UK, G8.
“All the discussions the doctors were having around me, GFR, GFR. I just couldn’t understand one bit of it. It scared me because no one was telling me anything. I felt like a cattle being led into slaughter. I couldn’t understand. I was told, you’ve got to have a fistula. I said, “Excuse me. GFR, fistula, what are we talking of here?”.” Man, 60s, P, postgraduate degree, UK, G8.
“It’s about making things simple for everybody, so that language isn’t a weapon.” Woman, 50s, P, postgraduate degree, UK, G8.
 Lacking personal relevance“Also, there’s a misunderstanding, his kidney function is perfect. There’s nothing wrong with his kidney function, but his kidney has to be removed, and it’s because of a cancer. The labeling for him as the end stage, of a kidney function, was not really appropriate.” Woman, 50s, C, postgraduate degree, US, G2.
“Even when they’re putting the GFR out there for you to read and understand they have in parenthesis that if you’re African American it’s a different number, but they didn’t explain why it’s a different number, that my muscle mass is different. So if I understood that, then I would have, I could have possibly understood GFR a lot earlier in my journey than it took me all these years to understand.” Woman, 40s, P, undergraduate degree, US, G3.
“Prekidney replacement, it is not luxury that everybody has.” Woman, 18–30, P, completed 12th grade, US, G3.
 Baffled by imprecision in meaning“As long as there’s like clear definitions to the stages, then that would work.” Woman, 30s, P, professional certificate, US, G2.
“Is it just kidney failure? Can we just ditch the end stage rubbish? Because that’s the period when your kidneys actually fail. You know, when they’re, when, they’re no longer able to do the job filtering out the fluids and the toxins.” Woman, 60s, P, postgraduate degree, Aus, G5.
“I’d rather them say your kidney function, because you know that they’re still working, but you don’t know how bad it is. If they say your kidney function is getting worse, then you can deal with that. But when they say now you’re at stage 3, now you’re at stage 4 kidney disease, you think, what is that? What is stage 3, what is stage 4?” Woman, 50s, P, completed 10th grade, UK, G10.
 Opposed to obsolete terms“The more technology develops, the less appropriate that word end becomes. I know that there are people out there for whom it is almost the end. But for the majority of people... well I think the majority of people, there are life sustaining treatments out there. Dialysis and transplant.” Woman, 40s, P, undergraduate degree, Aus, G7.
“So I’ve been end stage for 14 yr” Woman, 60s, P, professional certificate, Aus, G7.
Making sense of the prognostic enigma
 Conceptualizing level of kidney function“I’m still having trouble understanding what GFR is, I still don’t have that. So you all are saying numbers and percentages.” Woman, 50s, P, before 10th grade, US, G1.
“I used to get confused about kidney failure and my nephrologist would say “you’re not in kidney failure yet, you’ve got kidney disease.” So (my nephrologist) was using it as the end point kidney failure but I was thinking my kidneys are failing.” Woman, 50s, P, undergraduate degree, Aus, G5.
“They utilize GFR to put you into whatever the stage is that you’re in.” Woman, 40s, P, undergraduate degree, Aus, G7.
“… I like that better than the whole end stage.” Woman, 60s, P, professional certificate, Aus, G7.
“So what is this level, is that good or bad? Because I didn’t really understand. If it’s at this level, because they take your bloods, if it’s at this level does it mean it’s good? Does it mean that I have to start preparing for my funeral plans?” Woman, 50s, P, undergraduate degree, UK, G8.
 Correlating with symptoms and effect on life“The symptoms are not matched up at all. I was in stage 5 and I still didn’t have any symptoms.” Woman, 30s, P, undergraduate degree, US, G1.
“And in the stages say this part is going to increase or this symptom may increase in severity in this stage. That way it won’t be click like a surprise when it happens.” Woman, 40s, P, undergraduate degree, US, G1.
“My doctor said, well you can have dialysis anytime now. It’s a matter of how you’re feeling. And I was going back and saying I’m feeling really good. But the strange thing I found was, earlier on, I was feeling much more sick and that wasn’t coinciding with my bloods? I’ve got a few major diseases so it was really difficult to work out where the fatigue’s coming from or where the nausea’s coming from.” Woman, 50s, P, undergraduate degree, Aus, G5.
“I could see vomiting and all the symptoms but I didn’t understand how that was connected.” Woman, 18–30, C, completed 12th grade, Aus, G5.
 Predicting progression and need for intervention“There was really no set amount of time that each stage went through. We were initially told okay, stage 2, you’ve got at least about 2 yr, then you’ll go into stage 3, and you’ll have about 6 mo to 1 yr. No, that didn’t happen, it just went off the cliff.” Woman, 50s, P, postgraduate degree, US, G2.
“Is it one of those things that you put a time onto though? Because that’s the difficulty. Because if you’re at stage 1, how long are you going to be stage 1 for, how long before stage 2?” Man, 50s, P, professional certificate, Aus, G7.
“Staging could be useful if there are different stages of treatment, depending on where you’re at. But if the treatment doesn’t change, then GFR effectively is you measure where you sit on a spectrum, which is effectively what staging is right?” Woman, 40s, P, undergraduate degree, Aus, G7.
“Stage 1 is your kidneys are not working, full stop. Stage 2 is getting bad, stage 3 is getting to the fistula stage, stage 4 dialysis, and stage 5 is not working.” Woman, 50s, P, postgraduate degree, UK, G8.
Mobilizing self-management
 Confronting reality“The words are kind of damaging and painful to the patient, but they’re a necessary damage, because you have to understand. End stage is a really harsh term, but I feel like it’s a good term, because you have to really drill it home that that really is the last stage of whatever you’re going through. You can’t in your head be like, if you hadn’t been told end stage. If you’d been told that you’re a stage 5, in my head at 14, I would have been like, oh, it’s just stage 5. I can still reverse it. But when they told me it was end stage and that I had a disease, like, a chronic condition that would go on forever, that really helped me understand, however much it hurt. However much it pained me to understand that I was going to be like this for the rest of my life.” Woman, 18–30, P, completed 12th grade, US, G2.
“What patients want is honesty. They want to know what the situation is. The term chronic explains that your kidneys have given up the ghost, and you need mechanical assistance to help you.” Man, 60s, P, professional certificate, Aus, G6.
“Heart conditions are much more prevalent than renal disease, it’s better known through the public, everybody’s known somebody who’s had a heart attack or their family. They use things like congestive heart failure, they say heart failure, they talk about angina. These are all quite serious terms, but we do it, then heart attack. They have connotations to scare the heck out of people as well. How do you impart bad news and serious news which can impact on someone’s life? You can make them devastated, but on the other hand there are people resistant to getting the message.” Man, 60s, P, postgraduate degree, UK, G9.
 Enabling planning and preparation“It makes you prepare ‘cause this is the end of the stage. I’m like okay well I have some time to figure things out.” Woman, 30s, P, undergraduate degree, US, G1.
“But I think the stages are beneficial in that they give you a sense of planning. If you allow them to cause anxiety, or give you something to start researching online, then it could not be very good, but I think the planning aspect of the stages is beneficial.” Woman, 30s, P, professional certificate, US, G2.
 Taking ownership for change“Predialysis, in my mind that says I’m about to go on dialysis but then I’m going to wonder is there something I can do to keep me from going on dialysis if you put it that way.” Woman, 50s, P, completed 12th grade, US, G1.
“It explains the disease but it lets you know if you have to change. You could say predialysis and if you change you’re not going to go to chronic. You got chronic and you change. You won’t go to full-blown kidney disease.” Man, 50s, P, undergraduate degree, US, G1.
“CKD stages works more people because as human beings, we’re goal oriented. I’m in stage 1 or however it’s classified, and if I do these things, it’ll keep me from moving to stage 2. A step down. You’re working to keep from being in if going down the scale. Right. It’s closer to the machine then.” Woman, 50s, P, completed 12th grade, US, G1.
“And they have to categorize it for me as a patient to know so that I can get my act together, maybe.” Woman, 40s, P, undergraduate degree, US, G3.
 Learning medical terms for self-advocacy“I’m actually very grateful for the big words and understanding the terminology, exactly what they mean. Because I can actually have a full interactive conversation with my doctor, or any doctor, and they cannot really tell me anything that I don’t understand. Understanding the big words, although it can be intimidating, this is your life. It’s not going to change. For me, I’m appreciative of the words.” Woman, 30s, P, professional certificate, US, G2.
“We are much more capable of shaping ourselves to their language.” Woman, 50s, P, undergraduate degree, Aus, G5.
“This is a different language. Languages do different things, like engineers have languages, nurses have languages, and I thought I’m going to learn the language. I deliberately wrote down all the terms that I didn’t understand, and then I started reading the relevant clinical journals, but only the clinical ones, so I could try and teach myself, a self-taught one on it. The most useful things that people explained to me were GFR and creatinine, and the idea that one is high and one is low. So I’ve come to terms with the beast.” Woman, 50s, P, postgraduate degree, UK, G8.
 Educating others“It’s also hard for the families. You’ve got to think about how that terminology is used in the general population. It has a very final ring to it. You don't want your family frightened to death because you really need them.” Woman, 50s, P, undergraduate degree, Aus, G5.
“I would say kidney so I can help educate someone else.” Woman, 30s, P, professional certificate, Aus, G5.
“You think there would be more support and less stigma if your family and friends understood more about it? Rather than just being told, “Oh, ESKD”.” Woman, 60s, P, undergraduate degree, Aus, G5.
“But then if you have to explain to parents, siblings, child, I have end stage kidney failure, they’re probably going to understand even less than we do. Potentially it could be detrimental.” Woman, 18–30, P, undergraduate degree, UK, G9.
  • P, patient; US, United States; G, group ID; UK, United Kingdom; AUS, Australia; C, caregiver.