Table 6 Impact on lifestyle/ADL concept elicitation—summary of responses and example quotes
Impact on lifestyle/ADL | No. reporting (N = 24) | Example quotes |
|---|---|---|
Limitations/burden of sickness/appointments/treatments | 7 | “I wouldn’t have to remember to take medicine every day. So there would be so much easier for me, and I wouldn’t have to carry pills around whenever I travel and make sure I don’t lose the pills. Yeah, I wouldn’t have to spend so much time in hospitals.” “Well, my experience it’s not like I guess having a normal life. Normal, I mean, not having it, you know, I found out when my wife was pregnant and so It’s not like I have known my whole life. That puts everything into perspective and that sort of puts some steps obviously that’s your life. And you can’t do things that you think is normal for other people to do everything, and I have to stop and consider everything–is it okay if I do this, or is it okay if I do that.” |
Can’t eat/drink what I want | 6 | “I think about what I’m eating. Not to say I’m modifying it, but I’m at least wondering how it– how it impacts my liver, for instance.” “It used to be a bit more difficult at the beginning obviously because I was very young, and I wanted to be drinking and eating whatever fast foods I wanted, things like that, and I still do all of those things, but very, very limited. And yes, when I do drink I do think about maybe I shouldn’t drink more than two glasses or three max, you know, look after myself and my liver ultimately.” |
Physical/exercise limitations | 4 | “Playing football, you feel like, no, I might get injured and things like that. And I tell people, there’s quite a few people at a football game. Not everybody’s playing so I guess watch it.” |
Increased resting/napping | 3 | “My daily life, I’m a [redacted]. I work in the [redacted], so you can imagine I need to be pretty much active every day. That comes in is the energy, so I don’t really get sometimes […] if I’m doing a lesson for two or three lessons, no break, I get very, very tired. Very, very tired. If I sit down, I sadly just fall asleep just for 10 min because there’s not enough energy in my body.” |
Sleeping difficulties | 2 | “And then I feel as well and I couldn’t sleep sometimes properly. At night, sometimes I wake too long.” |