TABLE 2

In a Fog: Barriers to Processing and Acting Upon Information

Major Themes (Subthemes)Caregiver Quotes
Mental exhaustion: this is too much“It’s been too much. I've been through too much. I just can't do it… I can't do it.”
“Because, you know, your child is sick, you're upset and you…you’re like just overwhelmed with everything. I mean I’m exhausted every time because I’m always working. So, when I come in here, it’s like I’m exhausted. I’m trying to remember everything.”
“Because if we don’t get sleep, I don’t know if you’re like me, but someone could be telling me, ‘you need to do this and this and this to your baby.’ And I’m like ‘uh-huh, uh-huh…’ And as soon as they leave, I’m like, ‘what did they say?...’ Right. You are totally nonfunctional and you could only survive on adrenaline for so long.”
Handling uncertainty“For me, it’s just the overall abruptness is the most difficult part because you don’t know what’s going to happen, if they’re going to get better because it’s always a little bit of a mystery why they’re sick to begin with, right? And so, that’s the hardest part…how do I know that my child is really getting better, how do I know when we take them off the drugs it’s not just going to come back and…but those questions have a way of working themselves out, right?”
“How do I know when it’s a situation that’s really bad and how much time do I have? Because in my mind right now, I had pneumonia once when I was younger, too, and it’s like, I never felt like I was about to keel over and die, right?”
“Because it [patient’s condition] was just going up and down and we would make a little progress during the day, and then at night he wouldn't have any urine output at all.”
Information overload“That was my one complaint and only complaint. I came home with a stack of papers. This big…What in the world?!!...Look—this is way too much.”
“They actually gave us a notebook so that we could make notes of, you know, whatever the doctor told us or how he’s doing or what they’re doing next. There’s one of us here at a time, so we couldn’t…you can’t remember everything they tell you. And also, so we could write down our questions as they came up for the next round where we wouldn’t have to worry about remembering what did you want to ask.”
Usability of information
 (Content)“I was satisfied this time because I knew what to do in new different scenarios, how to do it without having to panic…”
“I literally came home like, ‘What?’… Because she was coughing really bad. I’m like, ‘Oh, my goodness.’ … We didn't even talk about the cold. ‘[father of child], you didn't remind me to tell them [the medical team] about the cold.’ And he was like, ‘Well, what’s you up there doing?’ You know I forget everything. I don’t know. I felt like somebody should have said something to me.”
“I’m a young mom. That’s why it’s so hard for me to understand every doctor because I only had her, I’m only 19, so my daughter’s 3. So, it’s kind of hard.”
 (Unclear messages)“Like for us, you see I don’t understand her problems, you see I can’t say nothing about that because I was scared to leave this hospital.”
“I’m sitting there like, OK, can somebody explain what’s going on because you’re all saying 2 different things. One saying he needs to stay here on more antibiotic, you all think you all should change antibiotics and figure out what it is. I’m getting confused for a minute.”