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Table 2 Representative quotes

From: “It wasn’t as bad as I thought it would be”: a qualitative study of early stage non-small cell lung cancer patients after treatment

Participant ID Patient as person—treatment
B-R-2 I would go with radiation any time
D-R-2 [The treatment] was excellent! The people were very professional. Treated you with dignity and respect. And thoroughly explained things, how the procedure would go, and…for something you have to do it was a pretty pleasant experience. There was no stress or strain or nothing like that
M-R-2 The nurses did a lot to talk me through it and I wouldn’t have gotten through it otherwise. And they treated me so nice, but I was sure glad when it was over
E-S-2 They [the clinicians] were very responsive. If my nurse wasn’t available, if she was taking care of something or somebody else and I push the light, another nurse would come in and help… It was one of the better experiences I had for surgery. It was well explained, what was going to happen beforehand. I was allowed to go home after 10 days of the surgery, which was remarkable in my opinion. On other surgeries they just told me what they were gonna do and then let me like, ferment there for a while. The doctor didn’t come into see me on a daily basis like they did at [A] up there
Post-treatment
 K-S-2 [The shortness of breath] is getting better every day
 B-R-2 I didn’t think nothing of it [coughing up blood] cause they said that was gonna happen so… but it was only like for 2, 3 days tops. Other than that… it was very tolerable
 H-S-3 Well I have to be frugal. I run out of energy quite quickly and so… I can’t be as active and I’m not as strong as I used to be. It’s about what I expect
 D-R-2 I would much prefer to take the radiation treatments and that way they’d done the best thing they could do for me. Better than to say, “Well, we’re not sure it’s cancer so we just won’t do nothing,” and then a year or 2 years down the road, then it keeps growing and then pretty soon it- that’s the end of ya’
 E-S-2 … if anybody’s contemplating doing this surgery at [A] up there, I suggest that they do it. They’ll get great care and increase their life expectancy and their quality of life
Participant ID Information exchange—knowledge
F-S-3 One of the problems is that I’m getting messages relayed through the nursing staff and through the, you know, nursing assistants and so on, and my questions aren’t being answered. I don’t know why
B-R-2 Now if they’ve already got my lung I was curious, can you tell me if they got it all on the lung or not?… Well I don’t know because I don’t know what the results are. I don’t know if it slowed it down or if it’s killed it or if it was off target. I don’t know, I don’t have any information yet
I-R-2 Having to have the statistics is nice, but it isn’t so that I can count on them as much as it is to sort of say, ‘ok well if this happens then I can do this and if this doesn’t happen then, you know…’ so it’s sort of like without the statistics I might be just saying, “Well there wouldn’t be any point in having the radiation because I’m gonna die anyway so why bother?” So as far as if they refuse to give me statistics I’d be kind of wondering why
Participant ID Shared decision making
H-S-3 It falls back on the doctor if the patient doesn’t have the ability or the tools to research the situation
F-S-2 I still don’t see that I really had much of a choice. I learned a long time ago if you’re going to go to experts for their opinion, then listen to their opinion. There’s no point in going to them if you’re not going to listen to them… if you don’t have the knowledge and you go to someone who has the knowledge, listen to what they have to say! And then ask them why they believe that way and let that, you know, convince you. You either agree with them or don’t agree with them and if you don’t agree with them then you pursue the, you know, the question farther to find out, until you come to a meeting of the minds. I think that’s what happened in this case. It just seemed like the wisest decision, the wisest way to go
E-S-2 Well when Dr. [name] told me gonna have to… remove the whole lung… “What?!?” Couldn’t quite believe it but… it would increase my chances of survival by, well, twice as much as if I hadn’t had done it. So I made the decision all by myself…. God gave us freedom of choice so we need to exercise that
D-R-2 And they don’t really try to sway you one way or the other. They just tell you pretty much how it is and then they give you their opinion, and I look at things like this, is they know a whole lot more about this stuff than I do. And if they say that the odds would be better to do it than not do it, uh, they’re just not talking to hear themselves talk. They’re telling you with their experience and knowledge that this is the best thing for you. But the decision is ultimately yours. And I like that. They don’t uh, just say, “Well we’re gonna do this.” You know? They give you a choice and you can take it or leave it, but when you do, if it don’t turn out right then you don’t have anybody to blame but yourself. Don’t be blaming them
Trust
 I-R-2 I mean they just sort of tell you, “This is what you need to do and this is what we scheduled for you, is that going to work for you? And if not, we need to do something.” And so I basically said it was going to work for me cause I pretty much didn’t have anything else to do. [Laughter]… I really have a tremendous amount of respect for [my doctor]. I kind of believe [them]. I mean sometimes doctors make me a bit skeptical but [that doctor] I believe. If [that doctor] tells me I need something then I really believe that I need it
 L-R-2 I trust my doctors, I’ve made my decision from what they told me, and I stood by their decisions they gave me pretty much
 F-S-3 Oh I believe the doctor was correct. I’m sure that Dr. [2] would not tell me it wasn’t cancerous if it was