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Table 3 Quotes related to Information-seeking

From: The pathway to consultation for rheumatoid arthritis: exploring anticipated actions between the onset of symptoms and face-to-face encounter with a healthcare professional

Quote number

Quote (participant number/ disease referred to)

Why would participants discuss symptoms with others?

 1

I’ve got a GP friend at Shul. I suppose if I was a bit, you know, a bit worried about something, I would ask him. (p20/bowel cancer)

 2

Well, I’d ask my wife and she actually mixes with a lot of pharmacists. One or two of them seem to be quite level headed, if you’ll excuse me saying that. (p08/angina)

 3

Yes, if there was friends and family that I knew were in the same situation. Yeah, I think swapping advice and, you know, how they cope with it does help… (p19/RA with swelling)

 4

[I would talk to] My husband…So and, that’s, as I said, is that because sort of try and determine whether or not to go or … (p24/angina)

 5

Yeah, I’d talk - I talk to my wife every time. I mean, she’s my partner …there’s no secrets there. (p12/angina)

 6

I would I mean obviously people that I trust, my family members and anybody that might have…(p05/ bowel cancer)

 7

I would discuss it with my husband yeah – yes we’ve got quite a good relationship you know so there’s not a lot that we don’t know about each other’s health and routines and things like that. (p14/bowel cancer)

 8

We have a gathering Wednesday nights and Friday afternoons. We have a game of bingo. So that’s when you-in between we have a cup of tea and a chat you know. That’s when it would all come up. (p31/RA with swelling)

 9

Oh this, this happened to me. Have you ever had that?’ you know you just talk about things like that don’t you, really. (p15/angina)

 10

Talk this through with somebody, is it me just going off on one and making this a bigger thing than it is. And sometimes maybe an objective opinion in something like that would be… but I’d want to ring someone who wouldn’t overreact. (p16/angina)

 11

And almost leave other people to make the decision, or make the decision together. (p25/angina)

 12

I would definitely mention it to someone, that I didn’t feel quite right, and, ‘I’m gonna have a cup of tea,’ and where I’m going, just in case I collapse or something. (p30/angina)

Why would participants not discuss symptoms with others?

 13

No, I don’t think so. If I wasn’t worried myself, then I wouldn’t. (p31/angina)

 14

I’ve got quite a bit of medical knowledge, so I’ve got a good idea of what, you know, what things are. (p20/bowel cancer)

 15

Well I wouldn’t tell my daughter, I wouldn’t worry her and no I don’t think so, I think initially it would just be my husband. (p03/angina)

 16

That’s what I miss and I think the older you get, the more you miss that because it is more difficult to, you know.. I mean, the neighbours are very good and I meet people socially at the U3A, but not people you could really talk to and I think that is to do with age (p28/angina)

 17

…But I’d be a bit more embarrassed than with the other symptoms…

I don’t know; when something’s toilet related you just don’t wanna talk about it as much. (p26/bowel cancer)

 18

No, this is a bit vague, really, to get – I think I’d want to go in straight to the GP [General Health Practitioner], there and tell him exactly what’s been going on… (p04/angina)

Why would participants seek information from written sources or the internet?

 19

I’m not brilliant with the computer, but I just tend to go onto Google and then type in what it is that I’m looking for (p19/RA)

 20

I’d look at authoritative ones because I think there are a lot of, so I’d be looking for ones like the Boots site, Boots have one or NHS Direct or official sites. At this point I wouldn’t looking for sort of anecdotal sites like forums you know where people are sharing experiences because it just tends to frighten you quite frankly when you look at those things so I’d be looking for informed opinion and – and factual opinions rather than, you know rather than personal feelings (p07/RA with swelling)

 21

Mmm…I suppose the only thing with this is that I’d want to know if it was a progression of my own illness, so that I could rule that out. [I: … or how would you find out whether it is a progression of your own illness?] Initially the internet and databases and things just to look at… just to rule that out. (p16/RA)

 22

I get all the information from the various magazines form the Parkinson’s association. (P18/bowel cancer)

 23

Yeah I think with the internet if you think you know what it is you might sort of go and look on it because then you check, you know check your self-diagnosis and you check and you think oh yes I’ve got that and that and that, oh it sounds like that’s what it is right well I’ll just go and sort of see the doctor. Whereas if it’s sort of, you’ve got hundreds of, not hundreds but a number of different things and you’re not really sure then I’d just sort of […] let the expert decide I think. (p14/ RA with swelling)

 24

Yes, I’d need more information before I went to the doctor, so I could understand more about it and I could explain to him what’s happening in more detail. (p18/ bowel cancer)

Why would participants not seek information from written sources or the internet?

 25

I know people do look on the internet and things, but I don’t really – every single symptom seems to lead to cancer on the internet and so I don’t really go there that much. (p26/RA)

 26

I have a lack of trust of stuff on the internet, so…yeah. (p26/RA)

 27

If you start self-diagnosing, and you start cross reading things, you’ll make yourself even worse; you’ll make yourself panic (p12/angina)

 28

My experience of the internet is, it will answer your questions but you have to know the question to ask. If you are too vague, you get a whole load of information which, you know, whether it’s my age, but the internet is not the first point of call (p15/RA)

 29

I just wouldn’t - you end up confusing yourself on the whole, so it’s far better, once it gets painful enough and I’m in a mess as it were, or whatever, there’s only one place, the doctor (p13/RA)

 30

Now if he said yes it is cancer then I’d be looking at, on the internet about well what’s good to eat and how can you change your lifestyle if you’ve got cancer but I wouldn’t … (p07/bowel cancer)

 31

I haven’t got a computer at home, so I don’t know how to use it. (p18/bowel cancer)