TABLE 3

Theme 1: “caring role impacts”

SubthemeQuotes
Confidence and awareness“So, I'm pretty confident about following our GP's care plan and what to do in the time of an asthma attack”. (Spouse, P7, 46)
“So things that I would be confident about is that it's a severe respiratory condition and that it has hereditary origins and also can be environmental”. (Spouse, P4, 55)
“Probably most confident is actually recognising when he is in trouble”. (Spouse, P2, 68)
“What I'm confident about is helping my wife when she has an asthma attack. I have a fairly good idea of what I should be doing, how I can help and things like that”. (Spouse, P8, 68)
Caring identity“I feel like I'm more a partner than a carer. I'm there to share with him, not so much do it for him”. (Spouse, P10, 68)
“I do consider myself as a carer”. (Spouse, P1, 36)
“When he was really ill I considered myself a carer”. (Spouse, P11, 7th decade)
“I think, in a way, yes, because I can consider my role as an – as what I've said, as like an on-call carer”. (Friend, P20, 38)
Accepting caring roles“I feel satisfied. I feel happy about it, that I was able to give my sister support that she needed”. (Sister, P19, 34)
“You do anything, really, for the one that you love, but yeah, I don't think that there's much more positivity that you can get out of it, except that you're doing the best that you can for the person that you love. As a carer, I don't think anyone wants to be a long-term carer”. (Spouse, P7, 46)
“You feel good, yeah. It doesn't matter who they are, whether it's – yeah, I just like helping people, that's all. Rather me, I suppose”. (Spouse P5, 70)
“I hate being a carer. I hate him being sick, but I think anybody that has a chronic disease like that hates being – it impacts on your quality of life. It impacts on both our quality of life”. (Spouse, P11, 7th decade)
Caring impact on life
 Physical“So, it's hard for me to try and go to bed early, because my brain doesn't switch off. I have to use medication to help me sleep, otherwise I don't go to sleep, or I sleep very lightly. Because L also – because of her size – she snores loudly, if she doesn't use her sleep apnoea machine, that interrupts my sleep, but if she uses her machine it's not so bad”. (Spouse, P7, 46)
“When he's unwell there's lots of things and it's tiring. You're exhausted. You don't sleep at night… when he's really ill, it consumes your whole life; it's an absolute daily, nightly consuming thing in that everything has to revolve around it”. (Spouse, P11, 7th decade)
“… she has the diabetes as well, so it's a constant thing for the whole day and into the night of pretty much medication. There's more factors involved now. Like I said, there's the diabetes and then there's some other problems that she has prolapse and stuff. She has like a – we can't go too far without having to go near a toilet and stuff”. (Spouse, P6, 63)
 Interpersonal“So a lot of the times the impact is that if we planned to go out for a picnic, for example, it would have to be reassessed on the day, even from one minute to the next”. (Spouse, P10, 68)
“She doesn't always want to have sex but she's often, at times, can be rather breathless and it's not possible”. (Spouse, P16, 47)
“We might have missed out on either a family gathering, or we might have had to postpone an activity, like going to the movies or shopping because of her illness”. (Spouse, P7, 46)
“A very long time ago I gave up smoking”. (Spouse, P9, 66)
“It just teach (sic) me a lot of things, like you need to listen to your body, you need to get physically, you know get fit, and you just have to – if things doesn't feel right, then you don't ignore it, you seek help”. (Friend, P17, 35)
“That she will come to me and listen to me. That's important, for obvious reasons. I suppose it reconfirms that we have a close relationship because she will come to me in times of strife”. (Mother, P18, 72)
 Extrapersonal“I had to change roles and completely change my direction in my profession and there was a financial loss there in lost wages and benefits and stuff as well”. (Spouse, P11, 7th decade)
“There wasn't a place where we could live with the whole family that no one would be reacting to it”. (Spouse, P10, 68)
“… had to leave at work, I have no carer's leave anymore”. (Spouse, P1, 36)
  Emotional/psychological“I can get down, I actually suffer from depression myself, as part of being a carer. I actually had a nervous breakdown. I basically just hit the wall, as it were, and just couldn't face caring for L for a while. I ended up being hospitalised”. (Spouse, P7, 46)
“It gets to the point where I don't want to have to put my hand over and see if she's still breathing but that's how it becomes sometimes … you feel like you can't do anything and then other times you just feel like you're a bit helpless.” (Spouse, P6, 63)
“Yes, a lot worries me. It worries me that S takes quite severe medications, as in the steroids that she has to take that at the moment basically enable her to breathe but eventually are going to destroy her organs”. (Spouse, P4, 55)
“You never know every morning what the day brings and how he is going to wake up, in what condition he is going to be in. Normally you've got a sense throughout the night, it's like having a baby, you're on alert. You're sort of asleep but you're on alert, one ear is open. I think that's about it”. (Spouse, P3, 68)
“I had a nervous breakdown. It was a lot going on in my life and I had to come to terms with it”. (Mother, P12, 66)
“So, we have a daughter and she also suffers from anxiety because of L's asthma. If her asthma is really bad, our daughter almost switches into a mindset of almost panic. She wants to know if Mum's going to be okay and will she go to hospital. L's asthma is a trigger for our daughter's anxiety, so it does affect other members of our immediate family”. (Spouse, P7, 46)
“I'm afraid of losing her. So, it makes me feel helpless and hopeless”. (Sister, P19, 34)

GP: general practitioner.