What I Wish I Had: Desired Information and Suggestions for Improvement

Major Themes (Subthemes)Caregiver Quotes
Information desired
 (General instructions)“…I was asking them clear as day, what am I supposed to do…what's her home care, you know, what do you want me to do at home for her? Did you feel like you had a clear idea of what to do in the home? No. Because it was like, watch her. ‘OK, I watch her all the time.’”
“And you know, shouldn’t we just let her sleep or should we force her to wake up and eat more. I mean the kind of the midlevel instructions to go over, you know, a lot of it printed out in a bullet-point form and then also go over each of those things and answer questions … but it was only the 3 bullet points for severe conditions.”
“I think [I would want to know the] side effects of … the medicines that they give them, what can cause it and what can happen if they don’t get enough or how long you should give it to them, the milligrams and everything like that.”
 (Red flags/what to watch for)“But I really would like to see it on my discharge papers … you had to take his antibiotics for 7 days. Well, on day 8, you know he wakes up in the morning and he has a temperature, you know he’s got a fever. And then I’m thinking, did it say a 100 or does it say 101. Do I run to the ER or just call my doctor and, great, it’s Saturday, you know.”
“Like the warning, just like the warning ticket, you know, because they say like if, you know, she doesn’t eat, well, she needs to get checked in because she can’t afford to not eat. She’s losing weight. Well, how long does she have to not eat?... Before I need to call them. What about… and she doesn’t have dirty diapers today. How long does it go before we start to get worried about something like that?... And the difference between what’s the warning sign that, you know, you can just call your pediatrician about, what’s the warning sign you need to bypass the pediatrician and go directly to the ED?”
“More symptoms. More signs to look for just in case it came back. But I would just take the more information, the better to prevent…you know things to prevent it from coming back. If there are ways to keep it from coming back. The more information the better is to help so that was the point where I just keep my son in the bubble.”
Suggested improvements in the discharge process“So you see for efficiency they would hire some type of a discharge coordinator.”
“Well, I’m going to put a yellow sticker on the window, then there’s a smiley face and it says, I’m getting out today, this is for real. And then it says, my goal is to be out of here by … and you write down there with when you talk to them about 2 pm so every person that comes by that door knows.”
“I think a lot of return visits to the ER or actual visits to the primary care physician could be avoided if the doctors took time to sit there and say… these are the medications we’re giving. These are the side effects that you should look for or, you know, this is what your child was diagnosed with and make sure before you walk out the door that they have answered every single question no matter how stupid they think it is because no question is stupid when it comes to care of my child.”
  • ER, emergency room.