Table 11 Illustrative data extracts from theme E4: The role of support groups

Seeking a support group

“It would be really good if I could meet other people that were mainly in the same boat that I’m in, like a little support group maybe for graft versus host disease, you know, so we can all sort of like see if anybody else has got the same similar things that I've got, and we can compare notes.” (P1)

“I think that it may be helpful for other non-medical patients to have access to more patient self-help support. So, I think that Anthony Nolan do provide a lot of link ups with other patients, and I think that could be stressed more and I don’t know whether it was because I, you know, that wasn’t stressed to me and I've just stumbled across it, but it's there in the literature but I think because staff provide such a good service that … themselves, that they don’t just push you on to somebody else. But actually, it might be helpful for some people to … to be able to talk with other, you know, expert patient people who’ve been that way before and things like that.” (P3)

Value of a support group

“I have actually because in [local town] there's a blood cancer work group which I have been to one of their meetings. And there were other people there who had had sort of similar reactions, and it was nice to talk to them; to somebody who was… has had the same problems as you. Because if you’ve never had it it's very hard to talk to a non… or say to a person who've not got medical training because they sort of like don’t really know, do you know what I mean?” (P5)

After going to a support group:

“I should ask to go and see a dermatologist because, you know, I've got skin problems which are not being dealt with.”—P2

Negative aspects of a support group

Interviewer [re experience of a support group]: Did you find kind of hearing from other patients useful?

“Well that was quite scary in a way because I went on that thing just about 6 months after my transplant, and everybody said, ‘Ah yes, the first six months are easy and this is where it will all go wrong,’ and true enough it did… I think my wife… found it off-putting and alarming… But and it also gave me the confidence that there were other treatment modalities available. But it's… it was a sobering experience to hear not just the technical details of what could go wrong, but to see people that were experiencing those problems.”(P3)

Online sources of support

“Probably most of its probably online to the Anthony Nolan and Maggie's; there's stuff on there. But because I've done a few sort of… sort of helped a few other people with speaking about my experience. So, I can always email people and they always send me all the latest stuff; the up-to-date stuff, so it is online now. But I get… I generally, when I pop up the hospital I always pop into Maggie's and ask them if they’ve got anything, and they always give me links to find stuff. So, it's all online; it’s just having to look for it.” (P4)

Strong family/friends support

“I'd be open to it, but I'm also not really bothered by that cos the one thing I have realised in the whole of this past few years is that, to be honest everyone is different and it’s best focusing on what you're going through and how you deal with it, and if you want to talk to people there's plenty of support groups out there. I just haven't reached out to them; I get good support from my family.” (P6)