Table 4.

Theme 3, “Worry and Hope for the Future”

Theme 3: Worry and Hope for the Future
Subthemes	Exemplars
Stopped Working	“I tried that [Xolair]. I was on that for quite a while too - quite a while, something like two years … That just stopped working. Those blood tests started not being right.” James, male, 45 “I just feel like I get tighter a bit more often now than when I first went on it.” Jane, female, 64. “I didn’t feel like it [Nucala] was working, it made me sick … So I’m like, there’s no point taking these if they don’t work.” Rebecca, female, 21 “But once I got over the headaches because they slowly got better it started working really well and I felt good about myself. Then it just all of a sudden just didn’t work and I was like well, that was … that.” Rebecca, female, 21 “I think, for the first eight months, I think it changed a lot. I was quite able to - I felt that I was kind of living a normal life, which was amazing. But in the recent three, four months, I don’t think it’s helped me a lot at all.” Naomi, female, 34.
Helplessness, worry about the future, false hope	“I don’t know. And nobody can tell me, is good to take it for ten years. But I don’t know. Maybe in another year, maybe another dose, and [the doctor] will say we have to stop, I don’t know? And when I mention it, they say, well, let’s take it for one year, but there is some irritation, how of how long I can be taking it.” Nicholas, male, 77. “I’m starting to give up a bit [that something new will come along] … I think I’m pretty well the way I’m going to be all the time” James, male, 45. “There is a concern and it’s not a resistance as such. It’s more it’s done as much for me as it can do, yeah, because the asthma attacks are not quite as - how do you say it? They’re not as severe, nowhere near it, nowhere near it, but that first year that I was on it, especially the second six months, it was just wonderful.” Jane, female, 64. “[Do you worry about the long-term side effects?] Sometimes I don’t think I’ll live long enough to be worried. I don’t think I’m going to end up to be a terribly old person really.” Rhonda, female, 56. “What am I going to do when they find out that it’s not working [Xolair], what’s the next thing?[it worries me] … because I feel like it’s plateauing [the effect of the medication]. I guess I’m afraid of that creeping back. Is there going to be something else? It’s like I can distinctly remember having my first Ventolin and it was a miracle. It took me about six months to really appreciate Xolair and that was wonderful. Now what?” Jane, female, 64. “I’m sure at some stage I will develop a total - it will become inefficient at combatting what - the job its doing now. So - but - I’m hoping I run out of time before that happens.” Anthony, Male, 72. “We were just, when we were told about this new drug it was sold to us as a miracle thing that was … we expected, I wanted to at least have some improvement … and maybe not get off the steroids but lower the dosage with some of the other medication we might’ve been able to ditch. But it hasn’t eventuated.” Rebecca, female, 21.
Hope and gratitude	“When I started to get it years ago, asthma, there was no medication. I was told that was all in my mind and I was just stressing too much, even though I was crawling up the back steps. The fact that you have medication, I bow to the medical world.” Helen, female, 76 “[The clinician] was saying that they’re starting to look at perhaps strategies to wean people off Prednisone who are on these targeted severe asthma treatments. So, maybe somewhere down the track. Ten years ago, there was no such thing.” Ian, 63. “I’m all for giving everything a go, definitely. I had really high hopes for the mepo (Mepolizumab), I still do, but I have lost a lot of hope, and my quality of life has definitely dropped in the last four months.” Naomi, female, 34. “If your illness, or your chronic illness is bad enough, and if the medications you’re using are having an impact but not a broad impact, then if something was made available that was going to - I’m loathe to use the word, dramatically, but improve your quality of life, dependent on what form of asthma or COPD you have, then I wouldn’t hesitate in trying it; and that’s probably overall the reason I like to engage in these trials because somewhere, sometime, there’s got to be an answer to the discomfort that you go through.” Clyde, male, 57.