Table 4.

Verbatim quotes by theme

Theme 1: Facing challenges in health literacy

(A) Patient lack of awareness

It‘s not communicated within (families), you know everyone keeps to themselves, they don‘t really talk about illness a lot. (Acceptor, male, 37 years)

Yeah, for instance, this older cousin who had a … colon operation a year or two ago, never speaks to anybody about it. He didn‘t even speak to his own son about it. (Acceptor, male, 77 years)

I did know about it (colorectal cancer), but I never thought it would be, I thought it was mostly a male cancer. I never thought that, no, that I‘d be affected by it. Never even gave it a thought. (Acceptor, female, 57 years)

Genetic counselling, I‘ve never heard of. I don‘t know what and why, it almost has rings of it, for me, of sort of all those great genetic selection and those kind of issues. (Decliner, male, 58 years)

The testing then ends up getting in the hands of laboratories, drug companies. I read about a family or a group of families, I believe they were from New Brunswick, who have a… something special about their genetic traits. They were tested and now it turns out that some drug company owns the rights to their—well, I guess I don‘t agree with that, and so I wouldn‘t want to do anything that would have an effect on my family. (Decliner, female, 79 years)

It’s to help, in the process of finding a cure for cancer. (Decliner, male, 54 years)

(B) Health professionals’ passivity

And when he mentioned maybe a colonoscopy, we just sort of shrugged it off. But he never pushed it, I sort of felt that maybe if I had more pushing I would have done it. …I rolled the dice and I ignored the fact that I should be getting a colonoscopy… (Acceptor, female, 70 years)

They said we‘ll only go up to the turn in your bowel. But in that area they found 2, 3, or 4 polyps which they removed at the time. My family doctor always knew this; he was my principal care provider at the time. But in spite of this he didn't seem to feel that a colonoscopy was necessary (Acceptor,male, 77 years).

So I don‘t even know what‘s going to happen in this testing because not a shred of it‘s been explained…. you should really have the testing explained thoroughly in the beginning because it might influence somebody‘s choice. I don‘t know if it would have influenced my choice because I‘m here now going ahead with it. So, we‘ll see. (Acceptor, female 64 years)

Theme 2: Mapping an unknown territory

I don‘t actually think Dr. X. talked to me about that one. (Acceptor, female, 70 years)

And of course we talked to our children and nieces and nephews and nobody seemed to want to go and do it, they were afraid that it would be harder to get their life insurance and so on and so forth so. (Acceptor, female, 64 years)

I didn‘t see a result coming out of the counselling that would be helpful to me. (Decliner, male, 58 years)

It was about family, strictly. If I had children or grandchildren, both, I would have …very likely changed my opinion about whether or not to proceed with the counselling. (Decliner, male, 62 years)

No, it‘s not that I didn‘t want to do it (get the genetic testing), it‘s that I wanted to protect my kids. (Decliner, male, 54 years)

But that‘s not saying I would be willing to jeopardize my family….So, one of the most important factors is around privacy for your family…- I don‘t mind being poked and prodded and blood drawn and, if it‘s any help to anybody, but do I want to involve anything with my family? I think that decision is theirs and when they get a little older and if they run into problems, then maybe they will decide. (Decliner, female, 79 years)

I think there‘s a family up in Saguenay or something like that, who went through genetics. They have a disease all onto themselves and something like that. In that case, it‘s good for them to know this but it might have caused them a little bit of harm also... well it's just what everybody perceives them all of a sudden as, so they have to fight this sort of prejudice against them. (Acceptor,female, 57 years)

What are they going to do with it? And what‘s going to happen to it in 5 years, 10 years, 20 years? So… because there‘s nobody or no way that you really can say, hey, I want you to burn all that. And that‘s my concern with it… I think it‘s a good thing, but maybe it‘s the use that all this could be put to, that‘s my concern. (Decliner, female, 79 years)

Theme 3: Adjusting to cancer

If I considered it [genetic counselling] as being important, we probably would have worked on some sort of scheduling, but at that point in time, other things were on my mind and we were already on the road to having the operation done and that would be priority, you know. (Decliner, male, 67 years)

It wasn‘t really big on my list, I guess…. But I had to get chemo, I had to go for blood work, I didn‘t really have to do this. (Acceptor, female, 70 years)

Mmm… I‘m sort of busy right now…with something called cancer. (Decliner, male, 62 years)

My initial reaction when it was mentioned was put it in the drawer. I‘ve got just all I want to handle right now, let me get through this. (Decliner, female, 79 years)

Given that I got a lot on my plate, I‘m not interested. After this is over (laughs), if somebody came back to me and said, look, I understand you‘re reasonably well, you‘re over your surgery, you don‘t have any other real problems, any other big demands in your time or energy? No. Would you consider genetic testing because of these benefits to other people? Yeah, of course I would. (Decliner, male, 62 years)

I was going through an awful lot at that time, one more or one less didn‘t really matter. I live pretty far from the hospital so my biggest concern is to try and get everything packed into the same day, but sometimes it‘s pretty difficult to do that. (Acceptor, female, 57 years)