Table 2.

Selected quotations to illustrate each theme

ThemeQuotations
Invisibility of cancer
 Unspoken stigmaIt’s probably not the sort of thing males talk about when they are having a beer with each other or whatever. I certainly never had—if I’m out fishing or something like that with one of my friends, I’ll never hear him start talking about things like that. (Man, 60s)
It’s just not something that you would have come up in a conversation. (Woman, 60s)
It’s obviously a very serious type of cancer that needs to be caught in time, and it’s probably one that people are less likely to seek treatment for initially because of mainly embarrassment or have to have a colonoscopy. (Man, 40s)
 Ambiguity of riskI think once you’ve had a transplant and you’ve got the reduced immunity, because you’re taking immunosuppressants, I think then you’ve probably got a greater chance. I suppose if you’re in poor health overall, then you’ve probably got a greater risk too, so if you’ve got, you know, the disease is well advanced, then your general health is not that wonderful, so therefore you’ve probably got a greater chance. (Man, 60s)
I didn’t recognize the correlation between kidney transplant and the prevalence of other cancers, other than melanoma. (Man, 40s)
I don’t know why chronic kidney disease would make your bowels any more prone to cancer. I have no idea. Absolutely none. (Woman, 40s)
 Absence of symptomatic promptingBut until the symptoms appear, I suppose people like me just don’t think about it (Man, 60s)
If I’ve got pain or if I’ve got blood, anything like that. If I got to the doctor, and he says you’ve got signs of it. That’d become my number one priority, I’d have to do something about it then. But until then, I’ve got no signs or nothing yet. (Man, 50s)
I’d probably wait for symptoms. I don’t know why. I spend enough time at the doctors as it is without going looking for other things. (Woman, 60s)
Prioritizing kidney disease
 Preserving the chance of transplantationI’d like to know that I’m healthy and that I could deserve it. (Man, 60s)
Then when I was doing the transplant workup, it became part of it, so I did it just to get it out of the way. Of course, when it came back negative, it was a peace of mind. (Man, 60s)
I had the colonoscopy before the transplant to make sure I didn’t have bowel cancer, because it would be pointless doing it if I did. (Man, 50s)
 Over-riding attention to kidney diseaseBowel screening is at the bottom of my list really. Do you know what I mean? The top of my list is keeping well now, not in the future when I’m 60 or something. (Woman, 40s)
I’ve got other things to worry about. I mean, I may get something else, but when you’ve got kidneys and other things and that’s sort of down the bottom a little bit. (Woman, 60s)
That includes exercise and maintain my fluid level and my—what I eat. So that’s a higher priority, only because it’s an everyday thing. It’s an everyday thing. It’s something that you have to do every day to have longevity or until you get a transplant at least. (Woman, 40s)
 Protecting graft survivalHaving had a kidney transplant, you take every opportunity to make sure your own heath stays good, whether it’s looking after your skin, the mammogram, this, whatever, do it. (Man, 60s)
If something happens to me and that would stop me from having another transplant, and I’ve run through my whole family, I mean I don’t have another donor. (Man, 50s)
As a transplant patient, I am obligated to test for cancer. (Man, 50s)
 Showing loyalty to the donorIf I ever forget, I’ve got the transplant donor to remind me. (Man, 60s)
I’ve got a gift from somebody that the words thank you were not enough, but I believe the best that I can do for the gift I’ve got is to go out and live the best life and look after it. (Woman, 40s)
Preventing the crisis of cancer
 Evading severe consequencesPersonally obviously, it gives me peace of mind knowing that I don’t have bowel cancer or if I do have cancer, that I can get some early treatment. (Man, 50s)
The best thing about that is I suppose you’re taking steps to take care of your health. (Woman, 40s)
It’s better to know that you’ve got it or you haven’t got it to me. You have peace of mind. (Man, 60s)
No one wants to die if early detection could save you, you know? If you want to live a bit longer, have the test done (Man, 50s)
 Cognizant of susceptibilityFinding out that I am susceptible to getting bowel cancer, so that’s always on my mind. (Man, 40s)
Knowing that renal transplant patients have a susceptibility to cancers, and so for that reason, I will take any cancer screening I can get. (Woman, 40s)
If you able to have these tests, yeah I’m all for it. Prevention is better than getting into a terrible, terrible illness. (Man, 60s)
Cognitive resistance
 Reluctance to perform a repulsive procedureOnly from personal feelings of—what would you call it—discomfort I suppose—distaste about the whole idea of basically dealing with feces. (Man, 50s)
The preparation was disgusting, most uncomfortable. (Woman, 70s)
The worst thing with stool is collecting the samples. (Man, 60s)
 Intensifying disease burden thresholdI would imagine that people who are facing dialysis or transplant would have a fair degree of trepidation or hesitation, worry or concern about their illness—about their state of health. They may not want to know more bad news. If they had bad news at one time, they may not want—they might not be able to cope and handle one particular problem, but if they have a second but of problem that’s indirectly related to it, it might put an extra pressure on them they mightn’t want to face. (Man, 50s)
If people thought that, if it was picked up, that that’s the end, and it’s just one more thing they’re got to deal with, and it could kill them and may not actually want to deal with it. (Woman, 50s)
I’ve got enough problems without worrying about that as well. (Woman 40s)
 Anxiety of a positive testI was quite relieved when it came back negative. (Man, 40s)
Just the fear of the unknown. If I had to have one again, I’d be fine, but knowing, like anything to do with a medical procedure, there’s a certain amount of anxiety that wasn’t warranted. (Man, 40s)
The procedure itself from what I understand is no real big drama. It’s just the fear of finding out. Yeah that’s a scary one. C is a bad work. But there’s only one way to alleviate those fears and that’s to find out. (Man, 50s)
 Accepting the inevitableIf it happens, [I’ll] deal with it then, [I’m] not worrying about if and when. It’s like anything in life. (Woman, 60s)
It’s not enough for me to stay up at night or anything; I just have to deal with whatever comes my way. (Man, 40s)
No, I’m not going to be weighted down, shall we say, with something extra that I don’t have to worry about. I think that’s about right. It doesn’t cross my mind. (Woman, 70s)
Pragmatic accessibility
 Negligible financial effectTaking a bit of time off work, you weigh that up against the benefit. It’s always the cost-benefit thing. I feel very benefited by the whole thing and not inconvenienced in any way at all. (Man, 60s)
How does an individual put a monetary value on the peace of mind of having a bowel screening test? (Woman, 40s)
From purely a financial point of view, it might cost them, I don’t know, $10 per sample or whatever, if they save some money from radical surgery and chemotherapy and the whole works. You just cannot from a purely financial point of view put a price on that. (Woman, 50s)
 ConvenienceWell there’s no inconvenience, because it’s for the betterment of my health, so I didn’t see it as an inconvenience. (Woman, 60s)
I think it was convenient, because they didn’t put a time limit on it. They just said do it in your own time. I didn’t feel pressured or rushed into it. (Man, 40s)
The inconvenience is even to participate, but that pales in comparison with benefits, so really it’s not an inconvenience; it’s only a very small inconvenience for much better rewards. I don’t know why people wouldn’t want to do it, I really don’t; to me, it’s an easy decision to make. It’s a win/win. (Man, 40s)
 Protecting anonymityIt was something that you did in the privacy of your own home, top back on, put away, and a drop place that you weren’t identified. (Man, 40s)
I think the thing that makes it a little bit more palatable is the fact that it’s in your own home, and you don't have to go anywhere, and it can be in the privacy of your bathroom, and you don’t have to be in front of anybody. Then, once you’ve got the sample sealed up in the bag, it doesn’t look like anything innocuous. I think that makes it a little bit more palatable for people. (Woman, 40s)
I mean, I was in the privacy of my own home. It was a little bit uncomfortable, only because it’s not the norm—like it’s not usually what you do. (Woman, 40s)
It was private, and it was one to one. No one had to know about what you did. (Woman, 40s)