Table 2.

Reasons to support team situational awareness

Topic	Participant	Quote
Patient autonomy	AP01	I don't want secrets. If you know something that has to happen or if you know something's happening, if you don't tell me, I have a real problem with that. This is my healthcare, not yours that you're talking about. This is me being affected, not you being affected, so let me know.
	YC06	I’m not here just to sign the paperwork. This is her life, our life, so I need to know what's going on.
	AP10	Yeah. It’s good to know that they know what you want out of this outcome, what’s important to you. I understand what they’re trying to get done, but they need to know what I need and what’s important to me. Did we need all these procedures, did I need all these? They need to know what’s important to the patient and understand the patient, what makes the patient tick.
Improve outcomes	YP06	I would like to know how serious my illness just because—what was happening, and why I had diabetes, more specifics about it, so basically seeking it out like how dangerous low blood sugar is, and how much it actually affect me. I think without that knowledge, I probably wouldn't do as well at home. It would have taken a fairly long time for me to get stable. I think it's good to know how serious it is because—I really need to make sure I'm good at this
	YC06	Because for future decision making, if I understand why they're making a recommendation for something, it will help me make more decisions on my own going forward instead of having to call every two seconds—like what does [clinician] think?
	YC01	From the time she was an infant, in order to get her home we had to learn how to care [for] her. So in order to even get her home, we had to know, we had to be active, we had to take a part. Otherwise [clinicians] wouldn’t feel confident in us, and part of how she got home—she had her transplant on [date] and we came home on [date] which is 17 days later. Which is very uncommon, but it was because her dad and I and my parents had taken an active role in taking care of her, wanting to know what meds she’s on, why she’s on them, when she’s got to take them, how to take them, and being that active participant. Otherwise she wouldn’t have come home.
	YP12	Like say I wanted to start swimming exactly when I got out of the hospital and the doctors and nurses said that it would be bad for my health. [I don’t want to do anything] that they disagree with.
Manage expectations	YC08	Her IV for her antibiotics. I thought they were trying to figure out what kind of oral antibiotics to give her so that she can take them at home and then I found out today that that’s not even a possibility, it’s going to be that she’s going to have continue taking her antibiotics by IV. So that was the only change in plan that I wasn’t aware of until the GI doctors came in this morning. I was like—oh, you should have let me know, but at least I know now, not like the day we’re getting ready to go. Like oh, by the way, you’re not taking that pill, we’re just going to keep giving you the IV.
Create common goals	AP02	And then I do know from experience it takes a team to—when you're treating a person or trying to help a person, it takes a team to do that, because I might not have all the answers or all the services that they need. I might have to like resource out for that. But here they have a team that has all that under one roof. And you see that. I don't know, it makes you feel more comfortable, I guess. More safe.
	YC01	Every once in a while, she gets infusions of what they call IVIG…and they had decided that they wanted to do an infusion last night. Which in and of itself it’s not that big, but they wanted to do it in conjunction with diuretics…So they wanted to start it at 9 and give her diuretics at midnight, and her dad and I are like that’s not okay for her to be up all night. She’ll be up all night going to the bathroom, that’s not fair to her. She needs to be able to get some rest. So can we change the plan? The doctor came in, we talked to him, and he listened to us, and they did it this morning in conjunction with diuretics like they wanted. It’s just they waited because we spoke up.