Table 4 Example data excerpts for each theme

1a. Beliefs about the condition (assessment of symptoms, degree of long-term threat; predictability of condition and explanatory models)

Whenever he starts to come down with a cold. You know, if he has the sniffles, then I will start him. I will say okay, you should definitely be on your medication. . . . When I think that he is well enough to be taken off of the medication then I do. asthma [20]

I do get worried about it yes. I feel very guilty, and I know, you know, we’re going to lose her, I shall lay at night thinking of all the times we didn’t do it and didn’t nag her to do it, and she’d be here now if, em, you know we had been rigid with her. cystic fibrosis [23]

1b. Beliefs about the treatment (efficacy, side effects)

I just think you hear so many things about steroids. When he was four months, he was given Prednisone, his teeth were coming out. … They got ruined . . . Some kids who get a lot of steroids, studies show that they have got hip replacements. Something that eats your bones or something. Asthma [20]

I realize that I have the power to postpone the death of my child thanks to the medication. HIV [25]

2. Difficulty of treatment regimen

It's overwhelming. It affects everything you do even though you don't want it to. You don't want it to control your life but it does. Diabetes [15]

As you can appreciate, if you’re putting them on at night … when she’s screaming that she can’t stand to have them on anymore too, it’s very difficult. splinting for juvenile arthritis [33]

3. Child resistance

She’s having a difficult time right now and I’m having a difficult time. She absolutely refuses to write down her blood sugars. I had taken the attitude that I wasn’t going to push and make her follow all these guidelines exactly. I don’t know if that is so good right now. It’s very difficult. Diabetes [15]

Cause when she was small, giving her the medication didn’t have too much of a problem. She would take it. But now making sure she takes it, watching over her, standing behind, it’s really rough ‘cause she forgets. I have to be the one to remind her… sometimes she gets so careless… and I have to get rough at her, you know, about taking the medication. HIV [28]

You end up battling with your child and getting nowhere. juvenile arthritis [30]

4. Impact on relationships within families

I felt almost cruel sometimes making her do it but I have to. juvenile arthritis [30]

Often he says, “If you give it to me I’ll throw up.” So that night he went to bed and I didn’t give him his medication. I gave it to him the next morning and that was it. Sometimes when he’s really, really upset I don’t say anything. I just let it go. HIV [29]

I think if you didn’t differ and you didn’t give a bit and take a bit, the children would go mentally deranged, they would, but if you were the sort of parent, and I’m sure there are, that say, right it’s 9.02 and have you had your this and have you had your that? It would crucify a child I think, I really do. cystic fibrosis [24]

5. Preserving ‘normal life’

I don’t say that much to him [about asthma]. Because I mean you have to be careful else (sic), well you can’t make them. But I try not to say much to him, you know. Because he has got to get on with his life. You know we try to let him do as much as he can and do what he can. He has got to get on with that side of his life. I mean I could make him paranoid but I think that’s why he is OK about taking his medicine. Asthma [34]

If you’re just saying look the only thing that’s important is medication, X would say no it isn’t I want to go and have a life. cystic fibrosis [24]

He was telling Dr A ‘I don’t like taking my medicine in school because the kids, they nosy and they bother me.’ So Dr A told me, she said well, why don’t you take your medicine at three o’clock when you come out of school, when you get home. HIV [28]

6. Input from health professionals

I didn’t actually think we were told how important the exercises were. I don’t even remember somebody saying anything. I know the importance now but if somebody had just sat down and said if only you knew how good these were, drummed it into us but they weren’t. I can remember her going to [named hospital for outpatient physiotherapy] … and she walked out of there and I thought brilliant but they never sat me down and said you’ve got to do this. juvenile arthritis [30]

As far as this med stuff goes, having the kids making decisions, it just doesn’t work. They can’t. They’re not old enough. Their brains aren’t mature enough [laughs]. And they’re just teenagers. Teenagers can’t even make decisions about school. Easy things. My daughter and I had talked about it. And actually she doesn’t want to have to be concerned with what’s going on. That’s always been my job. And she’s not ready to have to make the decisions. She doesn’t know how to. And she’s tried to tell them that, and they’re not listening. (Adoptive mother of a 15-year-old girl) HIV [29]

But once they talked to her and let her really know the importance of its, and that it’s for her good, she’s doing much better. HIV [28]