TABLE 4.

Transitions and agency quotes

Factors	Examples
Shifting responsibilities	Because I’m not sick anymore. I can do things by myself and I don’t need to be watched all the time. That’s one thing I hate about school is that there’s teacher help in some classes and they always feel the need to watch me personally. I just hate that, you know. It just bothers me because I can do things by myself and yet they don’t seem to understand that. (Figure 3)—T3
	I do have concerns because learning for him has always been an issue, and of course I worry about how he’s going to take care of himself in the future and everything, but I don’t think that’s any different than how I feel about my other kids.—P3
Assessing adherence	Because I hate it when he’s taking his last dose, and all of a sudden, “I need these this afternoon.” That is a little frustrating for me. I don’t like that. I like a few days ahead. [Fortunately,] it hasn’t happened for a long time. He’s gotten a lot better.—P3
	I’ll beat myself up over it. Or my mom isn’t, she’s the best mom on the planet, but like my mom is like, “You need to do better.” And that doesn’t help because I know I need to do better. But there’s certain things that people say about, that my mom says or there’s certain things that I say to myself that I know isn’t positive. I know isn’t the best thing to say, but sometimes I feel like I need to say them to myself.… You feel like you’re the reason that you have this. I’m not taking care of my kidney, not doing this right, I’m not trying.—T5