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Table 10 Illustrative data extracts from theme E3: Information provision—‘went into it with a bit of a rosy view’

From: “Is this the GVHD?” A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service

Information does not adequately prepare “I think I was a bit naïve because I was… I had focused more on what could happen straight after the transplant…And I think I was just so pleased I'd completely forgotten about what could happen later, yeh. So, it was… it was a little bit of a shock… I think I was more told about what could happen straight afterwards. So, I was told the worst scenario is when I'd had… after I'd had the transplant, rather than what could happen further down the line, yeh. There was more focus on that.”—P1
“Well, in general terms I was told this was going to happen, but I'm not sure anything quite prepares you for it.”—P8
“I don’t know whether I got the wrong impression or perhaps didn’t understand it quite enough, but I didn’t… I didn’t think that the after effects of the transplant would last quite so long. I think that’s… I mean it wouldn’t have made any difference to my decision to go ahead. I mean that decision for me to go ahead and have the transplant cos essentially there was, you know, no other option… I probably went into it with a bit of a rosy view of how long the after effects would last, and perhaps not fully understood what those after effects could be. But the trouble with all that is, you know, you're on a spectrum and the poor old medics don’t know where you are until they’ve… on that spectrum until they’ve done it. And you're not going to find out until you’ve had it done, you know, they can spout statistics at you, but in the end, you know, you don’t get a… you don’t get fifty percent rash.”—P2
Sufficient information at the right time “I think that it was certainly mentioned but not stressed, and I think that I probably had sufficient information. I think once I had had the transplant then interestingly, I was given the book; I think it's called Seven Steps or something, which is the Anthony Nolan guide, which goes into it into a lot detail. So, in some ways I feel a bit as though I was given the small print after the event and the broad brushstrokes beforehand.”—P3
Lack of information “I think, me personally, I could have done with a little bit more information, but it might have been cos I didn’t know what to ask or sort of what, you know, fully to expect… Whereas, now it's, you know, you can… there’s loads of stuff online you can read and find out and they give you the information as they’re all bit more… bit more on the ball so to speak.”—P4
“I think maybe we could have had a little bit more of an explanation as to what it is and what causes it, and what was like the treatments that are about that we could have… that we would be given… I think we could have been given more information just as to what to expect, cos I was expecting, you know, like the … I thought I was going to end up looking like, you know, blobs and lumps and bumps… In actual fact, it wasn’t as bad as I thought it was going to be, but I really thought that I was going to look hideous…They told me everything that was going to happen to me when the stem cells went in, and they were right about that, but that little bit afterwards I think I could have maybe done with a little bit more information just to … to sort of like put my mind at rest as to know what to expect because it was an unknown quantity.”—P5
“We were told that there would always… we’d always be ups and downs and it's great when you’re on an up, but when you’re on a down you know, it’s sort of a… and you don’t understand why, is quite depressing. But with more information to understand why it’s happening I think that the people would be… they would be more proactive about their care, and it would be easier for them.”—P5
Sufficient information given “Fortunately, they gave us a very good book—the Bloodwise book, which explained it in a way that it didn’t scare the life out of you if you end up going on Google or something like that.”—P5
“So, the information I was given, the leaflet or booklet like GVHD, was very good and I read carefully, and if I don’t understand or have a question, so I ask the doctor and things like that. So, didn’t really much problem I had.”—P7
“I did have enough information but I think it's … it’s human nature to listen and understand the information rather than really taking it in and understand the implications of it, and I was certainly guilty of that. I mean I read all the books. They told me what it can do, and it can last for a long time… so yeh, I was well prepared, there was good sessions from the nurses beforehand, but I think on balance it was the right thing… way of doing it because I think you should focus a lot on the process of going through the bone marrow transplant itself and the early days of recovery rather than necessarily focus on GVHD.”—P6
Consistent reminders in clinics “[Staff in the clinic make] every effort to make sure that I'm aware of like the problems… so, we are aware of where we're coming from in that respect… The nurses that I see in the clinic and the consultant, they’re always looking… always checking you out… checking you out that they sort of see how well it’s doing and that, and they advise us accordingly to what we should be doing, which is good.”—P5
Side-effect not clearly explained “When I went on the oral steroids…nobody explained to me in advance that one of the side-effects of that was weakening of the musculature in the pelvis and the thighs, and I got quite discouraged by the fact that I seemed to be getting worse at climbing stairs and walking than I had been before. But once I realised it was a drug side-effect that was clearly a relief.”—P8