Listening to kids
I think the most important thing is to take your cue from the child, and they will often have their own questions, and when they stop asking, I usually stop telling. They often know how much they want to know. Sometimes, for the little ones, it’s like, “Am I going to swallow it and that’s how it’s going to get in? How’s it going to get in?” And the older kids start to think about, “Well, where does it come from?” But in between, you really wait on their questions, because you don’t want to give them information that they’re not really ready for.

Elizabeth Blume, MD, Medical Director, Heart Transplant Program

 

For the parents, we have a lot of education material. We give them a pre-transplant binder and a post-transplant binder that breaks down the entire transplant process. If it’s an inpatient evaluation, I usually meet with them every day while they’re here and do the education in little pieces. Families don’t always realize that they’re going to have an ostomy for several months afterward, so that’s usually the biggest shocker, when I say that the child’s bowel movements are going to be in a bag. That’s usually what they have a difficult time with.
If they’re a child, we sit down with them and have conversations about it. We talk about it, we have a doll that has an ostomy, it has a central line, it has JP drains, so they can see and play with the doll. Our older patients have gone through psych evaluations before they get listed for transplant, and a lot of medical play and just talking.

Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs

 

Talking to kids vs. teenagers
The way you approach it totally depends upon the developmental level of the child: with a young child we wouldn’t discuss statistics or anything like that obviously, but with a teenager I would.

I would tell a small child that their lungs are very sick (and some kids don’t even really understand what a lung is, so I might explain that), and that they need new lungs to make them breathe better so that they can play with their friends. We would tend not to focus a whole lot on the actual surgery. And I find that young kids ask questions if they want to hear the answers. If they don’t want to know what the answer is, they generally don’t ask the question.

I think for older patients, a lot of parents don’t want them to have a lot of information, and we almost insist on it, because we feel that depending on the developmental age of the child, kids over 13, 14, they need to know what they’re signing up for.

Dawn Freiberger, RN, MSN, Lung Transplant Program

 

Resources to help parents talk to their kids
If families aren’t sure what to say to their children, they can contact Child Life and we can help talk them through it. We can help facilitate a conversation with them; we can give them tours of the Cardiac ICU or Cardiac Inpatient Unit to give them a sense of where they’re going to be; or we can just give them the right words and terms to use with their children. They know their kids the best, so I don’t think there’s ever a wrong answer as far as what parents want to tell their children. Our job is just validating that and helping them through that.

Kate Huyler, CCLS, Child Life Specialist, Cardiac Intensive Care Unit

 

Expressing Concerns
My advice is to be as honest as possible with kids at the level that they’re capable of understanding. I think it’s okay for kids to know that you’re scared or that you’re concerned. At the same time, I probably wouldn’t advise you to have a tearful breakdown in front of them, because I think that could alarm them, but I think allowing them to see your concerns allows them to express their concerns and allows them to feel true emotions about what’s going on, and it gives them the permission to not have to always be the brave, strong child when maybe that’s not where they are at that moment.

Emily Holman, MSW, LICSW, Social Worker, Multivisceral Transplant Program

 

Answering questions
There are several things that I think are helpful. The first thing is for the parent to open up the conversation with their child and with the siblings. The kids have questions, and are sometimes hesitant to ask them, particularly if they see that it’s difficult for their parents to talk about what’s happening. Kids are as protective of parents as parents are of kids. Let the child know that they can ask questions and talk about their fears and the parent can tolerate the feelings the child has.

Many kids who are waiting for transplant have had a variety of medical experiences and may know about IV access, surgery, and medicines. These are experiences that you can refer back to as they wonder about what transplant will be like. Many kids also worry about dying and may not discuss this with their parents because they don’t want to upset them.

Sometimes questions come up about where the lungs are coming from, and that can be a tough question because for lung transplants, they are deceased donors. Some questions can be really simple and parents give more information than what the child is asking. If parents can let the child know that they are open to talking about all these things and really listen to the child’s questions and then try to respond to what is being asked, it can help them prepare for transplant.

Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program

 

Expecting the unexpected
No matter how much planning we do about what the family’s going to tell the patient, they might hear about it elsewhere. They might overhear a conversation on the phone or in the hospital or in the clinic. They may look it up on the internet. They’re going to hear some words they don’t quite understand, so as much as you try, they’re not going to be insulated from it.

We try to prepare parents for when kids do ask those questions. It might be randomly when you’re out in the middle of an errand, and we let parents know that they don’t always have to have the answer right then. It’s okay to say, “That’s a really good question. I think we should call Dr. So-and-so!” or, “I’m going to have to find some more about that.” It gives the parent a chance to collect themselves and think about how they want to approach it, and if want to, they can call somebody and double-check, “What’s a good way to talk about this? They’re starting to ask about it.” But the child also knows, “Oh, they’re going to ask. We’re going to get this answer. They’re not just blowing me off.” Sometimes I think parents feel like they have to give the answer right then, and that’s a lot of pressure, to come up with exactly what you want to say right at that moment. That’s tough.

Kristine McKenna, PhD, Transplant Psychologist

 

Continuous teaching
You need to be honest and to use real language, and to give them confidence that they will get through this, that we’re walking on this road together. We explain that we’re here all the time so that if you have any questions, you can let us know what you’re thinking, because lots of times people think about things that are really not accurate, and sometimes the worry they feel is really worry they don’t have to have. And to be honest, some procedures are not comfortable, and they do hurt, but they don’t last forever, and we will manage to get through this.
As the child gets older, we need to make a developmentally appropriate adjustment – something at each stage of their life to help them to rebuild. Right now I’m working with a couple of social workers to develop on the idea of a developmental checklist. We’re taking kids when they’re very young and trying to find out what they already know and where we need to educate them along the way, and to also do some parent guidance around how to teach their children. If a three or four year-old who already has language comes in to see a specialty doctor or something like that: “So, we’re going to see Dr. Smith, okay? Dr. Smith is taking care of your kidneys, okay? Dr. Smith is trying to keep your kidneys as healthy as possible and he’s going to maybe give you some medicine.” By the time the kid is maybe five, the kid has some explanation like, “My kidney’s not working right,” or “My kidney needs some extra medicines.” They get the concept. By the time the child is eight, he may not know the names of his medicines, but he knows that he takes two pink pills in the morning and one brown pill in the evening and he has to drink a lot of water. Especially around transplants, even the four or five year old should know that they have to drink a lot after transplant in order to keep their kidneys nice and healthy.

Roberta Hoffman, MSW, Social Worker, Kidney Transplant Program