Table 5.

Quotes from parents on the impact of the child’s health status.

Quote ID	Quote	Parent
27	“I want my children to experience as normal a life as they possibly can and so for me, that includes travelling. So you know, yes we take those risks and we just go for it! And we do it because, you know I don’t want to have the regret of not having done it.”	Mother 3
28	“I work part time, I work 2 days a week, because after my daughter got diagnosed with PCD it was just too much I just couldn’t cope working any more than 2 days, um I just was really run down and tired and taking too much time off. I wasn’t sleeping well, I had to go down doing 2 days. Even so I do 2 days, I’m still struggling, I’m just thinking I might have to give up work, but financially we can’t cope to be honest if I did sort of give up work.”	Mother 14
29	“I stopped working so I could be here so they wouldn’t be at day care and wouldn’t get exposed to so many germs … you know I gave up my career so that I could better take care of the kids … I don’t work anymore. So this is the worst thing for me, if we are talking about me as a mother. I always thought that I would have a career and a family too, close together and right now I can only I don’t have any career right now and I studied a lot and when I meet my old friends, you know from university or from school, they are like, oh my god, I don’t believe you don’t work! This is what everybody expected or I was expecting from myself.”	Mother 8
30	“ … we always thought we have 2 children, but after having a child with PCD we decided not to have another child because we did not want to risk that we would pass the...the faulty genes on again and have another child with PCD...uhm I think very much...not so much from a selfish point of view as in we don’t think we’ll be able to cope with that … uhm … but we felt that it was not fair to risk having another child and passing on the condition again”	Mother 5
31	“I do feel I’m quite stressed, I’m quite run down. I just feel everything’s sort of on top of me at the moment … it’s just constant, sort of appointments and phone calls and ordering her medication and chasing it up and having to call this person and that person and so on and so saying they don’t know, then try this, it just goes round in circles sometimes, so I do get a bit frustrated and angry”	Mother 14
32	“With her it comes on so sudden, so you don’t really notice a change until it’s too late and you need to get her into the hospital on to oxygen. Because she could be fine, the last time we had it, she went to bed, she’d been at nursery all day, she had her tea, she went to bed, she was fine—I noticed she was a bit wheezy, so I gave her blue inhaler, I waited didn’t have any impact on her, gave it to her again and she was just getting worse and worse and worse. It was just so sudden like within a couple of hours we were having to call an ambulance out.”	Mother 11
33	“I hate it, it makes me cry every time. Because it just takes me back to when she was little when the first time we went into hospital and we were in there for 3 weeks. And it felt like we were never going to get out.”	Mother 11
34	“I think, for me and my husband, we’re a pretty good team actually. He, generally, in our general kind of marriage, we parent very similarly, but obviously it adds a bigger impact on us, on our marriage for sure because we’re making decisions that perhaps other parents don’t actually have to make. So it definitely puts a bigger impact on our marriage, but generally we’re pretty good at dealing with that.”	Mother 3
35	“I know it has had a big impact on my 2 other children, because of this condition that my child has PCD, you know. Because they can see I give her more time and I don’t have enough time for them and even if I do, I’m just too tired that my attention is not with them, especially when it comes to homework and just other stuff, you know cos I’m just physically run down and tired doing all the chest physio and stuff like that. I get tired myself, you know what I mean.”	Mother 14
36	“ … maybe they try to understand our position, but do they really get it? No, absolutely not! I don’t think, that’s a slight on anybody else, that’s just unless you’re living it, I guess you can’t really understand it. No more that I could understand somebody else’s position with perhaps a different condition.”	Mother 3