Table 2

Selected participant quotations for each theme

Theme 1: prioritisation of conditions other than AKI
Importance of other comorbidities“Going forward we don’t have any concerns about his kidneys. It’s more about his heart condition and how that’s going to function and if that’s going to keep on going”. (Son 006)
“My main concern is my blood pressure more than anything. They had told me my lungs would take a while to come back and they were really worried about my kidney because my blood pressure was so low. Apparently they had a problem during the operation, and not only did I get an incision down my front side, but the top of my right leg, I think they had to call another doctor in because there was no blood flow in my right leg. I don’t know, she wanted me to get my kidneys checked because she told me that they took quite a beating in there and that was because of my low blood pressure. I was never really worried about my kidneys”. (Patient 011)
“Just you know, my keeping my blood in line and my hemoglobin is low you know I had to have a blood transfusion, I get really short of breath so that’s my concern now. No (not concerned about the kidneys) because I don’t have any symptoms”. (Patient U-002)
Omission of AKI from the medical history“Kidney injury or kidney disease or kidney problems could be more immediate like a heart attack or uncorrectable damage that’s been done. It’s irreversible. I wouldn’t list the kidney as a kidney damage that’s an ongoing condition because I think he did go through it and now he’s back and he’s doing ok so I wouldn’t say that he’s got continuous kidney problems. I think that his kidneys are and they’re functioning normally right now”. (Son 006)
“No I would not (list AKI as part of medical history) because I believe it will be repaired. Let’s say you have this fantastic lung capacity and you start smoking and your lung capacity reduces and you quit and those ten years they say your lungs are very forgiving and could come back to their full capacity. I hope to be able to think that the kidney has that rebound effect”. (Patient 001)
“It’s funny because I just got a Medic-Alert on Monday night and I thought it wouldn’t hurt to have a Medic-Alert if something ever happened at least they would know what drugs I take in there and different things like having a central line. They ask you all that information you know, about your health and you know I don’t even think I did say anything about my kidneys”. (Patient U-002)
Theme 2: variability in comprehension of the significance of AKI
Not knowing the causes, symptoms and signs associated with AKI“I had some blood infection and then my kidney was also affected by that, everything like other things were due to the surgery and all so anyway. I have no idea”. (Patient 004)
“They took those nodes out and then I had one chemotherapy session after which my whole body crashed. Dr. X had explained to me that part of the kidney malfunction could well be that I have urine reflux. I wasn’t pushing enough urine through, so the base of the bladder could have an infection that was being passed to the kidneys, another time I was told it was autoimmune—the kidneys’ reaction and one time I was told herpes”. (Patient U-003)
“I probably wouldn’t be peeing as much, or at all or perhaps the coloration of my urine might be a little different than normal. All the related to the urine as I would observe it. I don’t recall during my time in the hospital when I was having any difficulty with my kidneys that uh, I was able to observe anything different to be honest with you. I guess they were recovering and I didn’t notice anything different at all”. (Patient 014)
“He would have to definitely not be feeling well, or not passing urine properly, or have pain. Any one of those symptoms, pain, he’s not sleeping, maybe his legs are swollen, or his hands are swollen so they could be a trigger, they could be a sign that something’s not right”. (Son 006)
“I don’t know. I mean obviously I’m urinating regularly and my kidneys are function, and I am not in distress, so, it’s an unseen issue”. (Patient 002)
“I don’t have any swelling anywhere on my body. I have no problem urinating so I think it must be okay”. (Patient 004)
“The kidneys help you breathe. I want to make my kidneys better. So I’m not doing anything to cause any kind of crazy breathing whatsoever. I’m gathering between the heart and the kidneys my breathing would go real shallow”. (Patient 007)
Misinformation on the kidneys’ ability to self-repair“I don’t know if it’s 100% reparative, self-reparative, but if it isn’t, I’m OK with it because the kidneys you have two of them. We can live on one so both my kidneys have had damage I’m certain the combined contribution of both these organs would probably be sufficient enough to keep me going for the rest of my life”. (Patient 001)
“I am not concerned because I believe we have two kidneys and my kidneys are probably healthy and I don’t think they were ever comprised to begin with and that the body is in itself a self-recuperating machine like the liver is. I heard that the kidneys are a self-recuperating organ”. (Patient 002)
“I rather think of it as more transient and fixable. Whereas with the kidney disease, you know if I do things sensibly and take the right medications, and keep things flushing, um, you know I feel like I have a little, right or wrong, I feel like I have a little control over maintaining a positive and good state of health, as I can. Like I feel like I can be participatory. Whereas I think if somebody told me you have heart disease, I wouldn’t really know, I wouldn’t really feel that I could do anything to make it better. With a kidney injury, I feel like I can do things to participate in improving kidney health”. (Patient U-003)
Theme 3: anxiety from discharge planning and competing health demands
Complicated discharge plans“I don’t think I’m taking anything directly relative to the kidneys but certainly to keep my diabetes under control, high blood pressure is well under control. An explanation sheet from the pharmacy about medications that I was taking, new medications and the reason I was taking those as opposed to the other medications. I’ve retained that sheet because it gives me a good explanation of the meds that I’m taking, what they’re doing and all that. All the meds I had been taking prior to going into the hospital were altogether different than the ones that I had coming out of the hospital, all the prescriptions were different”. (Patient 014)
“I haven’t been advised of anything, just to reduce my blood pressure. Just physiotherapy for my hip. That somebody from the AKI would ultimately call me. I mean to be honest with you, after being made to stay in the hospital an extra day because of this kidney issue. It was clearly not my responsibility”. (Patient 002)
“I said well wait I have not been told she is being discharged so then I was disturbed by that. I am coming to pick her up how don’t I know there is a discharge date. I was concerned and I thought well they know what they are doing. Then she went back to the hospital specifically because she needed lasix. That could have been prevented”. (Niece 009)
“My health priorities were to certainly keep on the meds that I was prescribed, cause just everything changed as far as my meds”. (Patient 014)
“Based on my discharge alone, from the hospital, I don’t know at this point whether my kidneys have improved more so. I don’t know the state of my kidneys”. (Patient 001)
Multiple specialists involved in care“Discharge plan was follow up with my kidney doctor, follow up with my neurologist, follow up with a kidney specialist, a follow-up with my cardiologist and a follow-up with my psychiatrist”. (Patient 001)
“The discharge plans were to get better and carry on from where I left off before it all started. They said I should see my family doctor and my heart doctor which I haven’t done yet”. (Patient 012)
“The joy of keeping track of all of these doctors because I am now waiting to hear from Dr. X when she gets back from the holiday or that, because Dr. Y wants some further information. The (referral process) was very well handled because it was from one doctor to the other and the appointment was made and then I was given a sheet with the information with what I could and couldn’t do and when the appointment would be”. (Patient 003)
“It was oh you can go home next week. Oh it will be Tuesday and you know, I’m saying well what happens with this? I’m, I need stroke rehab, you know you’ve been giving me choices for rehab places to go to that has to have a stroke unit, and now suddenly I can go home and what’s changed? And what do I need? And who looks after me when I get there? And, do I organize the radiotherapy and kidney clinic myself? Or how does that happen? So finally when I did get home, I had some paperwork that said I would be contacted by ABCD, ABC so far not D”. (Patient U-003)
“The information is flowing from all of these sources back to both the cardiologist and the endocrinologist, and also my family doctor, so I’ve got three guys that are involved here looking after things and keeping me on the straight and narrow. I’ve got another follow-up appointment coming early next year with regard to the endocrinologist. Also going back to another session with the gal on the pacemaker. I’m managing it and my wife and I are managing it as far as the appointments go. They’re all scheduled and usually at the end of one session I’m booking the next session right away”. (Patient 014)
  • AKI, acute kidney injury.