Table 2.

Supporting quotes from patients and carers

Reasons for taking part in the trial
Expectations	“Just I thought I would…it would help me with my breathing, and stuff like that. Which it did, because I read the book there, and it did help me a lot.” (216, Patient)
	“No expectations at all and was happy to play it by ear.” (317, Patient)
	‘just to basically try and improve the lot that she's got, that she's been left with, if you like. If you can improve her breathing, which to me it did just a little, you know…but, no, it did meet them and more (303, Carer)
	“Getting more knowledge about fatigue and breathlessness.” (408, Carer)
General experiences on taking part in the trial
Understanding	“Yes, because you explained it to me… in layman's terms.” (315, Patient)
	“The reason I joined the trial is because of the way things were explained – it was a better explanation than anyone has given me before…” (408, Patient)
	“Yeah, because it was treatment as normal and then this was extra that you wouldn't necessarily have had.” (303, Patient)
Completing questionnaires	“Couldn't have completed the questionnaires without the help of the support team.” (315, Patient; 318, Patient)
	“Found some off the questions very repetitive and didn't see the point of them. “Found some questionnaires difficult to fill in‐ had to have help.” (318, Patient)
	“I find it difficult to self‐assess and that wouldn't apply to every person but if it says how to…on a scale of one to ten, however, I found it difficult to assess…” (303, Patient)
	“There was one point, it wasn't upsetting, but it was a reality check. It was a question where I thought, oh gosh, yes.” (303, Carer)
	“Because of the type of illness B [patient's name]'s got, I found some of the questions a little bit hard to answer, because they weren't really relevant to somebody who was more severe with the illness…” (217, Carer)
	“My first reaction was to get through it. The questionnaires made you think……some of the questions were quite searching….some were intrusive.” (408, Carer)
	“In my opinion the one thing that probably was the paperwork, from my point of view I like the hands on, more so than sitting there filling in forms. That's probably why I enjoyed doing the work is love hands on, and I think as far as filling forms in, it's not my thing” (303, Carer)
Support from the research team	“Yes, there was nothing wrong with the support at all, and we were helped whenever we needed to be helped.” (604, Patient)
	“Yes, in a way, because you've got somebody to fall back on. If there's something playing on your mind, or you've got a problem with something, you know there's somebody there at the end of the phone that you can phone up.” (315, Patient)
	“Absolutely fantastic – wonderful people.” (317, Patient)
Benefits of participating	“… you learn to understand things a lot better.” (315, Patient)
	“I found out a lot more about the cancer, also after the cancer, the way I'd been feeling, and it helped me a lot I found out a lot, really, about things I didn't understand before. Yes, because I'm tired all the time, and that explained it. The coughing, which it explained it…” (216, Patient)
	“Keeping an eye on you…checking how you were…” (318, Patient)
	“Checking up on you …seeing how you are.” (505, Patient)
	“Of course there are benefits ‐ it made me realise what people are going through and that people do understand.” (408, Patient)
	“Yes, if it's going to help, and it's going to help other people.” (217, Carer)
	“Yes, because it has been a benefit to…, so I think people should try it, whether they find it doesn't help them…but unless you try it you don't know, do you?” (217, Carer)
	“Should have this course when people need it.” (408, Carer)
Experiences of receiving the intervention
Thoughts on being randomised to the NI	“I think we were pleased really weren't we? Extremely pleased, yeah. Because we thought oh yeah we can actually do something rather than being in the controlled group, because I've been in the controlled group before and it's just…they send you surveys and what have you but you feel as though you're actually in control of your illness.” (303, Patient)
	“I was quite pleased actually. It's not as though…no, how am I going to put this without sounding awful…before these exercises, I felt as though I'd just been left to get on with it, kind of thing. But when I was told I was going to be taught how to help myself with the breathing, I was really pleased.” (217, Patient)
	“Shocked, because I honestly thought when we were approached it might be the other group, the smaller group, which would be just paperwork. But, when we were actually put on this one I thought that it could only be good, and I think it was.” (303, Carer)
	“Yes – pleased….like I said before, because the more people are paying attention to him, the more I'm comfortable with that.” (217, Carer)
Breathing techniques	“Well, the actual breathing exercises have been brilliant. They've really helped control it. ….. And I got it under control a lot quicker than I was doing before.” (217, Patient)
	“But I think for me it was more about the breathing that helped me overcome the sense of panic sometimes really and just level myself down. loved stretchy man…I think that was the favourite one.” (303, Patient)
	“Yes, it was just the main part was getting to breathe in, but your stomach, and your bottom was supposed to go out… that is what I found difficult to begin with.” (315, Patient)
	“I think it's been a good benefit to me and I'm still doing it…I do feel better when I've done the breathing exercises. It calms me down and my breathing does seem easier.” (303, Patient)
Acupressure	“But I think I get a bit boring where I tried to do the same pressure points and I didn't try the knees. What worked for me were the ones on the wrists and the ones on the thorax and once you get into it and once you get the hang of it…they're not hard to do…and it's quite hidden from other people…you can sit with your hand under your sleeve on the pressure point on your wrist and nobody knows what you're doing but I felt the benefit that way as well.” (303, Patient)
	“The actual pressure points, the ones on my hand and on my wrist, it was a nice feeling afterwards, yes…. It's just, it's funny, it's difficult to describe, you just feel relaxed. It's as though it takes all the tension out of your arms. But the ones on the leg, and the sternum, no, they didn't do anything for me.” (217, Patient)
	“You know, even when I'm sitting here, or whatever, and I'll be like this so (referring to the wrist and hand points)…but didn't like the one on the leg.” (315, Patient)
Cough easing	“I did the swallowing again with the water and, yeah, they helped. But I think for me it was more about the breathing that helped me (303, Patient)
	“Sometimes it worked, other times I would take a sweet or something.” (315, Patient)
Additional positive effects	“No, because…I've started going fishing again, and that was the ideal place to do it, just sat at the side of the pool, because you're in an upright chair anyway, and it's the perfect place to do it.” (217, Patient)
	“You can do it while you're sitting in the bus shelter on your way to bingo.” (315, Patient)
	“I think you feel as though you're actually doing something to help yourself. And that must have well it does have a positive effect on your treatment.” (303, Patient)
Experiences of being in the control group
Written information/CD	“Found information very useful, especially the CD–it helped with breathing found it very calming ‐ found the voice very soothing.” (318, Patient)
	“Well, sometimes I find these sort of things, these little booklets, overdone, if that's the word. It's what is told in 27 pages could probably be told in just as easily seven pages So, at the end of the day one has to ask the question, has it done me any good. Because, by the time I'd got to the 27th page I'd forgotten what the first page said, and I'm no longer 25 years old.” (604, Patient)