Table 7 Illustrative quotes about mechanisms of impact and valued interventions from purposive sample of patients with non-malignant conditions

Mechanisms of impact

Mechanism of impact - gaining knowledge:

Patient: “Well I’ve gone back to my choir last Friday, first time in 6 months … and it was fantastic, I was so happy to be there, yeah, really pleased to be there. Couldn’t do the singing as much as I would like to, but it’s coming, it’s coming. And it was lovely because everybody was pleased to see me and lots of hugs and kisses, so … it was really nice […] I think it is the Breathlessness Service has done it […] talking it over with experts, having people come to the house giving me pointers of how I can improve my daily living”

[137t3p; Impact Categorisation Level 1 – Significant impact; Cell 1 – Biggest Improvers on primary outcome]

Mechanism of impact - feeling not alone:

Carer: “the fact that there are things out there […] it is the reassurance and support really […] we have felt we’ve had support from everybody, and I’m always telling people […] what marvellous support we’ve had, and it does make a difference. You know the outcome’s not going to be really any different, but it does make a difference to have that support, definitely”

[012t3pc; Impact Categorisation Level 1 – Significant impact; Cell 1 – Biggest Improvers on primary outcome]

Mechanism of impact - gaining confidence:

Patient: “the next thing she said is cool air, you know, plenty of air, and gave me that fan, and that when you are sort of out of breath […] use that for about 10 minutes, and she showed me how to breathe in and went not ‘ha’ (harsh) like that but ‘ha’ (soft) like that, you know, and she explained all that to me, and then the next thing she said is relaxing, not tensed up, and how I should position myself, sitting, lying down, and so on, you know, everything that … even standing, how I should do it, and she gave me the notes on it […] it gave me a lot of confidence with myself, which I didn’t have before, with this breathing […] it gave me a lot of confidence in the sense that I’m more relaxed about breathing, and even smoke less”

[158t3p; Impact Categorisation Level 1 – Significant impact; Cell 3 – Worsener on primary outcome]

Valued interventions

Valued intervention - handheld fan:

Patient: “She said this [fan] might help instead of the oxygen. […] When I’m just a little bit out of breath or first thing in the morning… when I’m coughing and spluttering I start getting short of breath, I can lay in bed and use that, so I don’t have oxygen upstairs. […] I take it to work [and] I can get out of the lorry more […] because I know […] I’ll put my hand in my pocket, turn it on as I’m walking back to my cab (puts fan on) and by the time I get to the cab I’m OK. Before I had it I used to have to stand at the lorry door and catch my breath […] when I’ve got a chest infection, like now, I get to the back of the lorry [and] the weather’s wrong or I grab a bin wrong… ‘phew’ [but] I can put this on, walk back to the cab. Whereas before I had this like… if I had a chest infection I’d stay on my arse all day”

[126t3p; Impact Categorisation Level 1 – Significant impact; Cell 3 – Worsener on primary outcome]

Valued intervention - positioning:

Patient: “well it was her who told me about my shoulders, which was very helpful I thought […] you get a pillow under each one […] and you relax your shoulders […] I found that very helpful actually, you know, I think ‘well, I’ve got to do my shoulders’ […] That’s entirely new to me that was. I’m surprised the exercise places I’ve been [didn’t mention] the shoulders. Amazing that is, absolutely amazing […] She said it puts a lot of strain on your shoulders by keeping them up all the time, you know, and she said do that […] and she showed me about the pillows, and […] that makes a difference”

[036t3p; Impact Categorisation Level 2 – Significant impact; Cell 4 – Moderate Improver on primary outcome]

Valued intervention – “breathlessness won’t kill you”:

Carer: “when he’s breathless he panics naturally because he’s always felt that […] he was going to die, but [the BIS doctor] said ‘that will not happen, not in one of your breathless attacks, you will not die in an attack’, which helped me because you know, I then have to think ‘oh my gosh, what can I do to help him’…you know. So she did give me some leaders as to what I can do to help, knowing now that he won’t die in one of these sort of situations, so that certainly helped me, and it certainly helped me to realise that, you know, I can probably help him to calm down. So yes, as a carer I think it was a help.”

[038t3c; Impact Categorisation Level 1 – Significant impact; Cell 2 – Limited Improvers on primary outcome]