Table 2 Informational support illustrative quotes

(1) Pre-surgical education session as a source of informational support

 “The [education session] is really informative….They prepare you for everything. If I went to the hospital without this program and woke up with my leg looking and feeling the way it did, I think I might have wanted a new limb.”

 “I went to all the pre-surgery meetings…But nobody ever really said, ‘This is not a real knee. This is not going to be the same as your other knee was. There will be limitations.’… I did read all the literature but nowhere did I see that said.”

 “The [education session] was pretty good but not good enough. I don’t think we really got enough warning about how much assistance you need afterwards…But maybe they can’t tell you what to expect because there’s so many differences in people too—it would take forever and maybe scare some people needlessly.”

 “I still don’t think that they explained how painful exercises are going to be at the pre-op session. You are told, but it doesn’t sink in. I think that should really be pushed. It is going to be painful but you can’t do any damage. Like, once the knee is in place, you can’t really harm it.”

(2) Surgeons as a source of informational support

 “The one you really want to rely on is of course the surgeon. [You want to ask] ‘What did you do to me?’ or ‘What are you going to do to me?’“

 “They are always in a hurry,… [My surgeon] showed me the x-ray. ‘And this is fine. It’s fine. You’re going to be fine.’…You are just a number and you just go and it’s quick, quick, quick.”

 “I think the hardest thing was [my surgeon]’s so hard to talk to…I think that probably was a lot of my problem, not feeling like I was given enough information.”

 “I only saw [my surgeon] a few times…a very nice person, very friendly to me. I wish I could see him more to get more information…but they have so many patients, [the visit is] so very fast.”

 “The surgeon, when I first met him, I thought, ‘Boy, that guy’s got no personality.’ When I got to know him I realized he does, but he’s a busy man. They are very busy. He’s willing to answer any questions but if you don’t have the questions to ask, how can they answer them?”

 “I wanted to know why I was so numb in my knee and [the surgeon] didn’t answer me. He just said ‘You’re going to have to give it time.’“

 “You have to be really prepared and aware what you want to ask. You got to go in prepared because you get a little nervous. You get intimidated by these guys.”

 “[My surgeon] walked us step by step. He showed me what the surgery would do and what it would look like and then he showed me the x-rays of my knee and he explained everything that was going on…I can’t praise him enough.”

(3) Other health care providers as a source of informational support

 “My family doctor is fine but he—perhaps because of the little bit more complexities in this case, he really didn’t have any opinions of his own about things. He really deferred everything to the surgeon.”

 “When I went for physio, the therapist kept on saying, ‘It’s going to be a year.’ And so that gave me hope too because when I first went there, I thought I’d be better already. I would have thought ‘A month has gone. What’s wrong here?’“

 “The [physiotherapists] here tell you to get on with the exercises and don’t back off on that. They did point out quite emphatically that if you have pain, use the medication. Don’t back off on the exercise because of pain. If the knee hurts, take a pill. Don’t stop bending it.”

 “The physiotherapists set you up with a program. You’re only allowed to go for three visits. So you are cramming in three visits all these exercises which you are supposed to do. And rather than following up, people just go back to their old patterns because no one is checking up.”

(4) Other TKA patients as a source of informational support

 “We are all comparing scars [saying] ‘Oh, your scar is so much nicer than mine.’”

 “If I had met [another TKA patient] who would have told me the honest truth—‘This could happen’ or ‘I had this happen’ or ‘There’s quite a bit of pain at first,’ you know, this sort of thing. I might have had more questions to ask [the surgeon].”

 “My girlfriend is getting it done so she was asking me different things… I did tell her to go to all the physio…. I said that through other people that were in physio, I did hear that [her surgeon] was a good doctor.”

 “I think seeing where other people are at [physiotherapy] gives you incentive too and makes you say, ‘I should be able to do this.’ Or ‘I should be working at it harder.’”

(5) Informational support for pain expectations

 “I don’t think it’s stressed enough and I don’t think I ever read or heard before I had the surgery that the pain is not going to go away for a year. I thought [it would go away] in a month”

 “I thought it would be better than it is…The twisting pain I’m hoping will get less but it’s still pretty severe…I thought my knee wouldn’t hurt when I walked down the stairs, and maybe it won’t, given some more time. I am constantly told ‘Wait, wait, wait.’ so, I’m waiting. I just expected less discomfort after this period of time.”

 “The meeting at the hospital before you went in for surgery where they were explaining kind of what is going to happen. And they kept saying, ‘Oh, yes, you’ll have a little pain.’ I wish they had been a little bit more honest as to the amount of pain.”

 “I got mixed messages particularly when I went to physio. One person would say to me ‘Oh well, don’t do it if it hurts.’ Another person would say ‘Well, that’s the way it is.’…It’s a bit confusing.”

 “[After my first knee replacement] I was afraid to push it too hard because I didn’t know if I was going to do damage because of the pain. This time [for my second knee replacement] I knew I couldn’t really do any harm…I think probably for a lot of people the pain with the exercises, they are not prepared for it.”

(6) Informational support for pain management

 “I’m frustrated [by the pain]… I’ve been back to my GP a few times saying, ‘Come on, there’s got to be something.’ ‘No, you are doing great.’ I go to physiotherapy. He says, ‘Oh, look at the movement in your leg. You are doing terrific.’ Okay, I am doing terrific but it hurts.”

 “The physiotherapist said it’s breaking down scar tissue which tends to form. You have to break it down to get the range of motion. And that gets uncomfortable. So bear with it. Use the pain killers as necessary but don’t let pain restrict your recovery.”

 “I kept on talking to [my family] doctor saying, ‘I don’t want to get [addicted].’ They say, ‘Take the pain medication, the pain medication. Manage it so you can move it.’ And I said, ‘Well, I don’t want to get addicted to it.’ ‘Oh, don’t worry about that, don’t worry about that.’ But I did worry about it.”

 “I think that if I’d had somebody I could call, even a couple of times like now and say, okay, it’s seven months, I’m in pain, the swelling is really bad today, what the hell do I do?”

 “There is nobody to talk to. You call the surgeon and unless there is like a major problem they don’t want to hear it from you because all they care about is what the x-ray shows and the x-ray shows perfect. It’s fine. The GPs, they didn’t do the surgery so it’s more pain control—like, ‘Do you want stronger pain pills?’ And I said no. I don’t want to just cover up the symptoms. I need to know what is going on. So you can get on the internet and check things, but there is nobody to really talk to about the pain, the swelling.”

(7) Informational support about recovery trajectories

 “Unless I’m the exception. I don’t know if everybody has [these problems]. ….It would be nice for them to say, ‘Okay. This is the scenario. Some people may get full movement back but some people may not,’ you know. If they could let you know those options but they didn’t.

 “My brother had both of his [knees] done two years previous and a friend of mine had hers done and the neighbour across the street had hers done with the same doctor that I got it done with so I kind of knew what to expect.”

 “I should have sat down with [my neighbour] longer because he’s had his knees done…I’d like to have a phone-a-buddy, to phone somebody that’s had an knee operation the same time I did and ask ‘How’s your recovery going?’“

(8) Informational support about other post-surgery issues

 “Nobody said anything about the clicking…It kind of [worried me] because I was wondering if there was something wrong, that it shouldn’t be like that. And, of course, I got told it was quite normal. Everybody’s knee pretty much does it. And he explained why, which was good. Once I got the information and I understood that it wasn’t a big deal, it was fine.”

 “[The surgeon should] take some time to really explain to somebody what’s really going to happen, like, what your expectations should be. You may not have the pain you had before but this knee is going to make noise when you walk. This knee is going to feel like it’s crunching inside your leg. You’re going to have quite an ugly scar. You’re knee won’t be shaped the same as your other knee anymore.”

 “This [part of my knee] is still numb. I asked about that. [My surgeon] said, ‘Oh, it may never come back.’ It looks very different than my other knee. I know I’ve got ugly knees but it’s small. This is smaller. It gets warm still and that’s something the physio said is not good… [My knee is] a lot better than it was but it’s certainly not as good as I would like it to be.”