23 January 2024: Original Paper
Preliminary Evaluation of 2 Patient-Centered Educational Animations About Kidney Transplant Complications
Sydney Johnson 1BCE , Anne Solbu 12BCE , Renee Cadzow 3CE , Thomas H. Feeley 4E , Maria Keller 12C , Liise K. Kayler 12ACE*DOI: 10.12659/AOT.942611
Ann Transplant 2024; 29:e942611
Table 5 Themes, categories, and representative quotes of patients.
| Theme 1. Message received as intended | |
|---|---|
| Category | Representative quotes |
| Edema | “I didn’t know they had to give you a lot of fluids and you were swollen, but they have to do that to hydrate the kidney.” |
| Incisional fluid drainage | “The incision might leak. If you go home and your incision is leaking, you’ll be panicking like crazy if you didn’t have that information ahead of time.” |
| Delayed graft function | “They say you have a sleepy kidney sometimes, and that’s the reason you go back on the dialysis. So, sometimes a kidney might not kick in right away. Don’t panic.” |
| Asking doctors questions | “I think the more you know, the better off a patient you’ll be, and you can address questions to your doctor a little better if you’re unsure if you actually have info than if you’re just going in kind of blind and not knowing what to look for or what to expect.”“I liked a lot of the videos that, you know, call the clinic if you have any questions.”“If that does happen, that’s the only part in the back of my mind, like, when’s this gonna kick in?”“One of the questions I have for my doctor is, if the kidney doesn’t take right away, am I likely to be on dialysis? Will I still have enough kidney function from my existing kidneys to avoid that?”“About specific things like medications, how do they affect you? How would my social life be?”“If I’m doing everything I’m supposed to do and it shuts down, how long would I have to wait to get another one? Like, is it gonna be a right away thing, or am I gonna have to go back to dialysis for a year or two.” |
| Risk of forgetting medication | “Most medications that I’ve been on for a long time, you miss a dose, no big deal. You just skip that dose and pick it up the next day or whatever. And apparently that is not quite so with this procedure.”“That was very informational because some people, like with other meds, you can skip a dose, and it doesn’t harm you. But when you’re in a transplant, what I watched from that video, and it reminded me that if I do get a transplant, those meds are very important. Don’t skip doses.”“Opened my eyes to how quickly things can change if you don’t follow the regimen of the medication.”“Definitely make me think twice about forgetting anything after the fact, that if I do end up with a transplant, that video would make me think twice about forgetting meds.”“Once you’ve messed up and, and missed your medications, it’s possible that you have a real problem--that it may not be able to be rectified.”“I mean, what I wouldn’t have did is doubled up on it when I got back.” |
| Remembering medications | “You have to plug that into your everyday routine.”“The biggest thing is to set the alarm on the phone. That’s gonna help me a lot to remember.”“Some things I’m gonna have to point out to my wife to remember.”“I have my keys, my wallet, and my meds, you know? And then I also make sure I have my sunglasses, my bottle of water. I have a checklist before I leave the house.”“If you don’t wanna carry the whole pill bottle, take a baggie, dose or two on you. Find a way to keep ‘em on you, you, there’s also those pill things you can buy.” |
| Obtaining transplant medication | “You have to make sure that you have your medication with you, even, even on the spur of a moment like things. And if you don’t, you have to turn around and go back and get ‘em.”“If you miss a dose, uh, that you do something right away, uh, call somebody or go back and get it. Not to double up on your next one.” |
| Paying attention | “I need to be paying more attention to the stuff because I don’t wanna end up there where I was.”“I have to take it completely serious, because I guess if I don’t take it serious, the only one that’s gonna end up hurting is myself, right?”“You have to do something. You can’t just, you’ve got, trying to get across the importance of what you’re heading into and that you need to follow directions because I know that there’s a lot of people that don’t follow their medicine regimen as they should. So, and they need to know that there’s a big chance of, you know, strong complications if you don’t.”“It’s kind of sad that, you know, you go through all of it, and you not doing what you’re supposed to. You don’t want the kidney to not work.”“That if I’m not doing what I’m supposed to do, then, you know, other things can happen.” |
| Role of providers | “I think the moment he realized he didn’t have the medication was to either call the nephrologist or call the medical team, and see if there were any other options, and then go home and get the medication. I would call the medical team and go to the nearest pharmacy and get what you need.”“Call the doctor right, right away.”“The doctors stay with you through the whole thing.”“A nurse will pay a visit from time to time to check the incision.”“The doctor was very informative and sent him with his meds to the pharmacy.”“This video will show that the doctors will take care of you, will help you, and will stay involved.” |
| Acceptable presentation | “It was just right.”“It’s not too much to grasp.”“It was easy to follow, easy to understand. Uh, nothing really threw me off.”“[The videos] kept me interested. It’s not, it wasn’t like dull or boring.”“They’re not like scary or too, you know, scare people off from watching ‘em.”“They weren’t too long or anything. Was able to do it in a reasonable amount of time before I worked this morning.”“I liked that it was only a few minutes, so then you could kind of absorb the information that, for me, better.”“It was fine because you wanna know what, when even watching the videos, I’m more process it by hearing than watching.”“So, for me it was good, but like the graphics and everything, it showed the pill bottles, it showed everything. So, it puts that in your mind.”“I think that the characters were okay. I kind of, I don’t know, would think I would kind of like, maybe like, a little bit more realistic, you know?” |
| Helpful and informative content | “It made me feel more informed.”“It’s very helpful because you have a lot of questions, but when you see the video, the video is clear where you understand so you don’t have to go in worrying. Like, oh my god, what’s going on? And it’s very clear, and it tell you everything.”“They were very educational. I mean, I learned a lot from the videos. Um, little relief also. I mean, not all the video was like scary. It was telling me what’s in store for me and what could happen if I don’t do things right is, it’s eye-opening, and it’s very good information to have. I mean, I think everybody should have it.”“I think they’re very informative, and they’re very like, directed to somebody that doesn’t have medical history or knowledge.”“It was direct. We’re not babies, so I’d rather for the message to be right there and clear, and it couldn’t get no clearer than that.”“I think they’re a great tool. It’s like, as I said, it’s tough because the complication one makes you, made me even kind of feel, and I can imagine if nobody went through it, a bit nervous, but at the same time, um, I think they need to know what could possibly happen.” |
| Best time to view | “I think before transplant… so you won’t be so scared after.”“Before transplant? Yes. Not after transplant because if you showed after transplant, the people already have their fears beforehand.”“I think that you should watch these videos, that may be implemented into the kidney transplant team’s like orientation. So, it’s like, before you go and get the surgery, this is, this is your risk factor, and if you don’t take your medicines on time, you’re gonna be in trouble. Like, after you get your surgery, it’s still good to know that, but it’s a little too late now.”“So, I mean, all the information before the surgery would probably be better in my eyes. Cuz that’s, all the information’s right there for you. And now you know, this is what you have to do.”“I would definitely recommend that patients that are looking at transplant get as much information and watch the videos as soon as very early in.”“Yes, I would say early. Either maybe after you have your first trip to wherever you’re gonna have your transplant, and they can show it at that time, or maybe right after that happens because you need to know everything that’s going on.”“I mean, it wouldn’t hurt to review ‘em after transplant, just to remind you of anything. But, in order to be prepared for anything that could happen, you, I would wanna know a little bit beforehand what the, uh, (inaudible) to know what is normal.”“Before, so they know what they getting into, you know, because when you don’t know what you getting into, you go in scared, you going in worrying and everything, so, but if you look at the video, you know what you getting yourself into. It’s a little relief off of you.”“I guess the earlier the better because anyone that’s headed in that direction, I guess anything you can do to alleviate uncertainty or fear is good.” |
| Watch again | “When I have more questions and I think about questions, I’ll go there and look and see what else I need.”“I think I probably would eventually. I’m not sure I’d do it immediately, but I would think I would try and get there prior to my surgery.”“‘Cause you see it before to let you know what’s going on. And then, then during transplant, this to remind you, hey, this is, you know, what’s, what’s going to happen. You know, just to remind you. And then, and then afterwards is, you know, remember what you need to do, you know? So, I think that, I think, I think it’s healthy to do it for all three.” |
| Sharing – for help with decision-making | “I watch ‘em with my husband ‘cause he’s the one that, you know, will be with me, and I can’t make, because I’m getting emotional, I’m getting, you know, panicky, whatever. I can’t make the right decision in my mind. He’ll watch it with me, and then we’ll talk about it later. And instead of, like, going into an office and watching a video where he is not with me, and us two can’t talk about it later, this will help me process everything more with him.”“I could even show them to my daughters or my grandchildren, and it wouldn’t scare them off either.” |
| Sharing – to supports | “I’d love to share them with my daughters because they’re going to be my main support system.”“I would probably share it with my wife, who will be my caregiver.” |
| Sharing – to kidney failure patients | “People that need kidney transplants, like my sister. She’s got really bad kidney. She refuses to go on dialysis, and her kidneys are just as bad as mine…I should share videos with her and just show her that it’s not as bad as she thinks it is.” |
| Concerned | “It made me feel okay. It wasn’t too bad.”“I’m not really that scared, but, you know, definitely intimidated.”“Little concern, but okay.”“The only part that kind of got me a little bit was when they were talking about the incision leaking. I think that would concern me a little bit.” |
| Fearful or scared | “It made me kind of fearful… me personally, like, not waking up or whatever. I have sleep apnea.”“I mean it’s scary. It’s really scary. It’s a big operation.”“I’m scared that if I ever get a kidney, am I gonna have them complications?”“Anytime you think about the true operation, it, reality hits you right in the face.”“I was excited about a certain thing, and then I was kind of scared about it. I’m scared to get it done, get cut open, and all this stuff. I’ve never been through that before, so just thinking about it kind of scared me a little bit.” |
| Reassured | “It was a little relieving that they said that the nurse would come.”“What they did is they showed me that there’s also gonna be a home care nurse that will come after the transplant…that gives me greater reassurance that there’ll be somebody there he can fall back on if needed.” |
| Not deterred | “It’s a little overwhelming to think that, like, it takes over your life a little bit, but it also saves your life.”“It seems a little daunting. Like it’s a, it’s a big task, but without it, your kidney ain’t gonna work.”“Just anxious to get it done. Even more to get it over with it…You just can’t wait till it’s over because, just the waiting’s scary part.” |