Table 2.
Summary of key themes and supporting quotes
| Theme | Literacy group |
Adult patients | Pediatric Parents |
|---|---|---|---|
| Importance of avoiding medical jargon Need for simplified/lay language and materials |
Both | [You] can say a lot of these crazy words, but everybody doesn’t really know what you’re saying… [I’m] more comfortable when doctors break it down. (limited literacy) | They’ll give you a printout at the end of the day when you leave about what happened with the visit. But I know a lot of times I’ll go home and Google because I really didn’t understand like what that meant…what it really mean in layman’s terms…for me it would be more helpful if it was already written in those terms, in just like general speaking terms. (Limited literacy) |
| Need for verbal teaching and demonstration | Both | But if you show them step-by-step, just like you with a child, if you show a child a step-by-step on how to do something, then they’ll get it, instead of them, instead of you just telling them what to do. You have to show them what to do. And they have visualizing and they’ll remember it. (limited literacy) | Actually show me, so that way I know exactly everything instead of me, you know, guessing or assuming … I had to give him 5.2 MLs, and the – what is it called – the medicine tube thing, it only had 5 MLs on there, so like I didn't know like where the two point was at, like 5.2. So if someone would have showed me like this is where 5.2 is, I would know. (adequate literacy) |
| Desire for increased information | Both | Don't put [important information] too far back [in the discharge paperwork], because then if you're just scanning through it you don't really care about the rest of the paper. (adequate literacy) | I want them to pretty much be more detailed about stuff, letting me know what's going on, just don’t go out there and talk, it’s my child. Let me know what's going on, too. (limited literacy) |
| Request for more, and protected, time with provider | Both | So if he take his time…I’m better able to get it. So, I would say people need patience. If somebody patient with me and explain it, and I’m listening to them, I pick it up. (adequate literacy) | I mean, have one person that can come in instead of being a doctor that’s trying to do 1,000 things at one time. Just the one person that could come in and just all about information and you could sit down and talk with them, and if you have any questions, you can ask some questions and they can answer your questions (limited literacy) |
| Concern about conflicting information | Limited literacy, primarily | I go home with the instructions they give me. I follow them. They don’t work. I call my primary and have me go in to their office, then they’ll say, well, they shouldn’t have gave you this if you’re already on this, and the next thing you know, I’m at another hospital. (Limited literacy) | I actually think the box instructions is pretty much always different from what the doctor say do…a lot of times when he’s discharged, I’ll follow up with his doctor and it’s different instructions of when to come back and it kind of get – a lot of times it gets like this tug of war between emergency and his regular primary care, when to go to either place, so I don’t really know (limited literacy) |
| Concern about provider judgment | Both | A lot of people don’t come back to the ER because they sometimes feel like they're being judged, because we come to the hospital when we do. (Limited literacy) | I seem like I'm listening and I'm like yeah, okay. And I don't want to – because they're doing so well trying to explain it to me and being real nice. And I feel like – oh, I feel like I'm gonna tell them I don't understand and they're gonna feel like they're wasting their time or anything. So I just nod like, you know, you get what I'm saying, I'm like yeah, yeah. (limited literacy) |