Quotations from transcripts to support the derived themes
| Number | Quotation |
|---|---|
| A passenger on a journey | |
| Q1 | Well when I woke up and realised that something was wrong with me, it was a little bit heavy around my face but that is all that I can remember…. I knew the hospital knew what they were doing but that's all. P05 |
| Q2 | Interviewer (following up on an earlier comment by the patient calling the NIV machine used a ‘monster’): So in Emergency, even though it was a monster, did it help your breathing? Participant: Yes it did, thank goodness, otherwise I wouldn't be here. P10 |
| Q3 | Well you can't say, “I'm not having this” or “I'm not having that”. Interviewer: So you feel like you need to go along with what the doctors suggest? Participant: Yes. P03 |
| Q4 | Whatever happens in the future, I can't do anything about it…. How long I live depends on what I'm doing at home. I do nothing so I can live longer. P06 |
| Q5 | I just feel that if it's time [for me to die], it's time…. No point worrying about it. P04 |
| Q6 | Well I know it's not going to get better, put it that way. I sometimes think about the future, mainly to do with the little ones growing up. I wonder whether I'll get to see their 10th birthday or their 21st birthday or whatever. Every now and again that comes up and you end up putting it back in your hip pocket and saying, “I'll think about that tomorrow.” P02 |
| Balancing benefits and burdens of treatment | |
| Q7 | I've decided in my brain that it doesn't matter how uncomfortable it is, it's still a relief and a comfort. I will put up with that sooner than not have the mask. P04 |
| Q8 | It's like it's just a bit uncomfortable and claustrophobic. But once the machine starts pumping air into your lungs all that goes away, with me anyway, because the breathing is a lot worse than having the mask put on your face. P07 |
| Q9 | I've come to look forward to [NIV] because for me I had not had any sleep. Prior to this, I went 32 hours without closing my eyes. P09 |
| Looking to another chance | |
| Q10 | I thought, “oh God am I going to die?” But they got on to it quickly and got me onto that mask and I knew I was going to be on it for a long time. P01 |
| Q11 | Well I can only speak as I find it, but if you get worse and something is going to improve you, you must use it if it's available…. I don't know much about these but I'm very glad that I'm talking. P05 |
| Q12 | I think my husband said to me “This is going to be good, it's going to get air into you, just go with it.” P11 |
| Q13 | Thank God there's no cancer there at all, but there's a bit of emphysema, and it won't get better but it could stay that way and if I stop [smoking] now, it could probably stay as it is. P08 |
| Q14 | Well I hope for the best. I hope I will be able to get back to the races. P12 |
| Q15 | When I've been talking for a while I get very breathless so I know in my own heart that it's going to happen but I just ask Him for one more Christmas and I'll be happy, sort of. P10 |
| Struggling and suffering | |
| Q16 | I don't even get the letters out of the box and it's not like it's a hundred miles away. P03 |
| Q17 | Yesterday I had a shower here and I finished but I didn't recover for about an hour. I was very bad. P06 |
| Knowing what relieves my distress | |
| Q18 | Lately if I walk by myself to do the shopping, I can't do it. I've also got a walker which helps. Without the walker I'm finished. P06 |
| Q19 | The first thing I did was to tell my husband to get me some [salbutamol] so I could have a machine which usually is a do or die thing. It either works or it doesn't. P04 |
| Q20 | I started to breathe properly so I pulled it [NIV] off. They said “You have to have it on” and I said, “No I'm breathing properly”. P03 |
| Q21 | …if they started off fairly low and then just gradually, you know, increase it [NIV pressure settings] …up a notch every 5 min or so. P08 |
| Feeling vulnerable and trusting staff | |
| Q22 | Well they put [NIV] on when I arrived, I remember that and that's it…. I went out like a light, so I wasn't with it. Then when I came out of it, I felt better. P03 |
| Q23 | That's the worst part of it. When you're not well you don't know what's wrong with you and your mind goes somewhere else. P05 |
| Q24 | …it made me so confident that all these very clever people were rushing around and helping me. I thought, whatever they wanted was OK. P01 |
| Q25 | I had a nurse who was very nice and she said, this is full blast which will be a bit uncomfortable but it's going to help you. While she assured me on that, I just followed. P12 |
Contributing participants are attributed by p followed by a unique number after the quotation, for example, P02 for participant 2.
NIV, noninvasive ventilation.