How do you help families adjust to the idea?
I think it’s just explaining things, then giving them something to take home and read, because they don’t hear anything you say the first time. I mean, I don’t blame them, it’s a lot!

Often we’ll put the parents, even at an early stage, in contact with other parents that have already had children with lung transplants so they can hear, at least from a parent perspective, “This is what it felt like to go through the evaluation, and then go through the waiting time, and the actual transplant and the recovery, and this is how we got our kid back into school,” and that kind of stuff.
I always tell families, I give you the doctor’s perspective. I can tell you all the things that I see and I know and I’ve done. The reality is, I haven’t had a transplant, and I don’t have a kid who has had a transplant, so I can tell you from the doctor’s perspective but it’s helpful to talk to families and get that family perspective as well.

Debra Boyer, MD, Associate Medical Director, Lung Transplant Program

 

There’s a lot of education that goes on. We dispel a lot of myths about transplant early on, and that seems to be helpful. Some misconceptions are as simple as thinking we can take a heart off a shelf, that someone else doesn’t have to pass away to get the heart. Some people think that there’s a very significant difference in their mortality, meaning that they’ll only survive one year after transplant, when in fact we have patients that are 20+ years out from transplant. Often there’s information about bone marrow transplant out there, but not as much about organ transplant, so a lot of families come in thinking that there’s going to be a lot more restrictions on them about not going to school, not being with friends, not eating raw fruit and vegetables, that kind of thing. We just try to dispel any of the myths that we can by providing an appropriate education and normalizing as much as we can.

We will bring in their primary cardiologist and their pediatrician, whoever their primary physicians have been in the past, to help them, to support the family, if our team is brand new to them. And we really just give them time and support to be able to make the decisions.

 

Heather Bastardi, MSN, RN, PNP, Transplant Coordinator, Heart Transplant Program

 

Each program has a social worker that’s committed to their program. We also have committed psychologists and psychiatry. We have ability to provide inpatient counseling to all the transplant patients and also outpatient counseling, if needed, here. We have Child Life specialists that work with the families both inside the hospital and outside. We have a back to school program, so when kids go back to high school, middle school, elementary school, if they want, the Child Life specialist and a nurse can go to their school and teach the kids about transplant, tailored to their age. It’s also dictated by what the patient would like, so if “John” gets a transplant and he wants his classroom to learn about hand washing, then they would focus the back-to-school program on hand washing. So that’s a great resource that we have.

Laura O’Melia, RN, MSN, CPNP, Director of Transplant Nursing

 

One of the big things that we try to do if the family and the patient are interested is connect them with another family or patient who has gone through transplant. We can talk until we’re blue in the face about what this process is like, but we’re not the ones that went through that. Sometimes hearing it from a peer can be very powerful for a child, and they can really ask all the nitty-gritty questions: how was this for you? Did you have pain, did you not? Did you feel weird having somebody else’s organ in you? And sometimes hearing it from a peer is very different than hearing it from an adult.

Melisa Oliva, PsyD, Transplant Psychologist

 

What sort of resources do you provide to help families adjust?
We also screen for eligibility for resources: is this kid eligible for anything, home-based services, block nursing, any of these kinds of programs? We do a lot of financial assistance with families, screening for eligibility for either state, local, federal programs, or facilitating fundraising, things like that. We talk about the Family Medical Leave Act and help them fill out those papers, help them do Make-a-Wish – we’re always filling out forms for people to try to get them services.

We also do a tremendous amount of school liaison work, that’s another huge part of what we do: talking to guidance counselors, connecting school nurses to our nurses, to really educate them. A lot of times that takes the form of helping the school understand what the kid can do – because lots of times, the parents have said, my child can’t, can’t, can’t, or the kid is saying, I can’t, can’t, and we want the healthy part of the child to get addressed by doing the normal things the kid can do. We often go to school meetings and work on getting kids into programs that they might not have been eligible for without certain information: IEP’s, 504b plans, all those kinds of things. As kids make transitions from nursery school or early intervention into school, school into middle school, middle school into high school, we keep talking to guidance counselors – and certainly as kids are going to think about going off to college, we help to prepare them for what lies ahead.

Roberta Hoffman, MSW, Social Worker, Kidney Transplant