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Advice
Recommendations On How to Hear Information from Your Child’s Treatment Team If you need to hear important information from your child’s treatment team, have another person with you so that they can help you translate or understand what was said, and so that you both walk away saying, “Okay, this is what I heard— what did you hear?” That’s one thing. The other thing is that I very much recommend that parents write information down, because sometimes the doctor will come in and start speaking about what’s happening, and then when they walk away the parents will say, “Oh, I forgot to ask this really important question that I’ve been thinking about for a week!” or “I don’t really understand— exactly what did he say?” So it helps to have it written down. I think those are two important pieces of information: have another person there, and write down information. And I also let parents know that if you don’t understand what a clinician is saying, you need to stop them and say, “Listen, I’m not really understanding it in this way. Can you think of another way that you can explain this to me?” I think it’s very important for parents to feel empowered that they can do that. Beth Donegan-Driscoll, Child Life Specialist
Routines While a Child is in the Hospital I think that if a child has a routine while they are in the hospital, a plan for the day, it really helps. I also think that parents need to plan some “down” time for themselves, during which an aunt might comes in to the hospital for a day to be with the child, or a grandmother might comes in for a couple of hours. I think the parents need a little respite while they’re here, just a little time to get away from the hospital. I think that parent support groups are wonderful ways to hook up with other families that might be in the same situation, and people get a lot of support there. It can go both ways; if someone in the group is having a really hard day it can kind of bring you down a little, but for the most part, parents really get a lot of support from other families in groups. But I think the break is key because it’s not normal for a child, unless they’re very young, to be with their parents 24 hours a day— for their parents to stay there during the day and then sleep by their side at night. I think it’s important for parents to kind of break away a little bit. I would say those are the big things. I also think that if kids can have another child visit them while they’re here, like a peer, that’s very important, and that if they have siblings they should keep up that relationship. I think tutoring is very important; I think if a child is in school, parents should really take advantage of the hospital’s services and have the child sit with a tutor instead of having a parent trying to help them with their homework. The children seem to resist a little bit more when a parent is helping them than if they have somebody sitting next to them who is a teacher. I think those kinds of things really help the day go by a little faster and provide routine, and that’s what kids need while they’re here, just as adults need routine. Also, objects from home help, like favorite movies, favorite games, favorite toys or favorite stuffed animals. I think if you can incorporate those into a hospital stay, it really makes a difference. Beth Donegan-Driscoll, Child Life Specialist
Tips for Talking to Your Child About a Transplant I think you should be as open and honest as you possibly can with your kids about transplant without providing too much information in terms of statistics and survival rates. I think you should have an open discussion, because kids who are nine or ten years old that I know of who are listed are going on the internet and looking up this information. Sometimes we ask a family, “Did she talk to you about this?” Or, “Does he talk to you about this?” And they say, “No, she doesn’t really talk too much about it, but we’ve seen her on the website looking it up.” Some of the websites are pretty graphic in terms of showing you the operation and lungs and everything, and children are going to get their information or they’re going to think it in their head— they’re going to come up with something on their own, and it may in fact not be true. Kids will certainly find out, and when they do they may resent their parents for not telling them things and say, for instance, “You didn’t tell me I would have this big incision now!” So I think it’s just better to be open with them. I think you should sit down with them and ask them outright, “What do you think a lung transplant is? What do you think is going to happen in the operation, and how do you think you’re going to feel?”— Really open-ended questions. It doesn’t have to be all at one sitting; it can be as you’re driving in the car or just being together. Just ask questions. I think it’s so hard for parents to even fathom themselves that their child needs a lung transplant that I don’t think they really know how to deal with talking about it with their child. So I think that the child just kind of goes along with the flow- with what the parents decide. Emily Trombly, Lung Transplant Coordinator
Patience is important; it takes a lot of patience just to sit around waiting for a new heart. Having a good understanding of what is going to happen helps a lot. The saying goes that a little knowledge is a dangerous thing, but in this case a little knowledge helps, because you know what to expect. Parents who are a little bit more laid back have an easier time. Any person with an anxious or easily stressed personality as their baseline has a tougher time. I just tell parents to expect the worst but hope for the best. If you come in anticipating that you will be here for a month after surgery and you get out after two weeks, that’s great. But patience is key. We’re doing the best we can, and we’re all doing it to help the child. Maura Harlen, Cardiology Staff Nurse I
Keeping Track of Important Information We try to encourage parents and older patients to keep a notebook for notes from their visits. And also to keep track of simple things like who your primary care doctor is, who your kidney transplant doctor is, who your urologist is, what pharmacy you go to, what health insurance you have, and what medications you are on. I think this is important because unfortunately people can get caught between healthcare providers, and sometimes the families have to do the communicating between providers, especially when they are outside of the institution of any given hospital. And having a primary care provider is also extremely important. Greta Feinberg, Nurse Practitioner, Kidney Transplant Program
Asking for Help After a Transplant I think it’s important for parents to be advocates for their kids, and to really ask questions and take advantage of their providers. At least in our program they have a lot of opportunities to have face time with doctors, the nurses and the whole team, and I think they should take advantage of that. It’s work after a transplant; it’s just as hard as before a transplant if not harder. If you have a four year old you need to get two to three liters of fluid into them a day. That’s huge, and that’s the sort of thing that our parents talk about as the real work after the transplant. And of course there are medications to manage on top of that, and food, and school. So I think people need to enlist support after transplant. People really focus on the transplant itself, but it’s not the surgery and the admission it’s the years afterwards. It’s important to have supportive people so that when you do have to come in for an admission that you didn’t plan on you can have somebody there to watch your other kids, and have a real support system that you can rely on. Greta Feinberg, Nurse Practitioner, Kidney Transplant Program
Working with Multiple Clinicians I think the worst thing that parents can feel is that they are getting mixed messages. Their surgeon may come by to give them an update and say one thing, and then their cardiologist may come by and say something different. The best way I have heard it described is that everyone is going to have their opinion on how things should be handled and how things are going. But everyone does talk to everyone else and it is a team effort— it all really comes back together. And it is not as though one person would make a decision without anyone else knowing. I think parents can feel like there are a lot of different people taking care of their kid, but really everyone is working together. Thomas Miller, Cardiac ICU Staff Nurse
I’ve always felt very strongly that you should try to know as much about your medical care as you can, both in the case of diet therapy and in general. The more you know about your kidney, liver or cardiac situation, the more you will understand the importance of the medication you are on or the diet you are on, and the better off you will be. I think that it is healthy for people to ask questions, and I always tell people, “Before you stop taking a certain medication, before you decide that you don’t like this particular form anymore, tell me, so that we can start looking for alternatives if they exist. If all of a sudden you decide that you are very bored with your diet, or you really want to have a certain thing in your diet that you didn’t care about before, talk to me about it, because there is really no reason you can’t have it.” Some of the same issues come up after transplant as well, but in different forms. Some of the medications people take after a transplant cause hunger issues, and obesity is not an uncommon side effect, so all of a sudden you go from being on a diet that restricts your intake of certain nutrients to not being restricted for those nutrients but instead being restricted in terms of how much you can eat. Diet seems to be an issue that very much carries through into the transplant phase. So I think that the people who do best form good relationships with their caretakers, including their dietician, and ask questions so that they learn more about their situations. Nancy Spinozzi, RD, Renal Dietician
Most people are very anxious to show their clinicians the strengths that they bring to a situation. But we also need to know where their weaknesses are, because that’s really where we need to help them most. So I think that people shouldn’t be embarrassed to say, “You know, I really have trouble following this aspect of my care.” When we hear something like that, we really respond and help them find a solution, because we know that it’s going to be okay. It’s just a matter of identifying the right help at the right time. Nancy Spinozzi, RD, Renal Dietician
Transplantation is not a cure; you’re making a trade. You trade the disease that you have for a new set of problems, and that new set of problems is related to the transplantation, the immune suppression, and the risk of rejection or infection. You’re trading those for all the problems that you had beforehand. It’s very important that you understand that it isn’t an operation that cures and takes care of everything; it does expose you to a new set of problems. Fortunately, those problems are much more manageable than the others that you had on the onset. Craig Lillehei, MD, Transplant Surgeon
The Role of a Transplant Social Worker For me as a professional, I would like to say to parents to please use the support here at the hospital, because no matter how many friends, family, doctors and nurses you have, my role is different. I’m basically there for the parents. My role is to be there, as a resource and a support for the parents, not just to help with bills etc. So I would tell people to please not hesitate to call or contact me, when they’re in the hospital or at home. I follow the families from when they are listed; I don’t go away. Also, I don’t think that anything really helps parents more than being able to hear stories of a) other parents and b) other kids who have done this. - Ann Rounseville, LICSW, Heart Transplant Social Worker Facing and coping with the daily demands of treating kidney failure presents a formidable challenge to patients and their families. I see my role as a social worker on the team as one that can help families learn how to cope with the changes and stresses associated with the illness, to help them think through, in a practical way, how to manage in the short and long term. This often takes the form of addressing concrete needs such as getting to the hospital, where to stay, how to pay for it, what government or private programs the patient might be eligible for to help pay for hospital bills, medical supplies and equipment, etc., advocating for educational and vocational planning and services for the patient and sometimes siblings, and addressing and planning for a wide variety of emotional and developmental needs of the patient and other members of the family. In a practical way, it means understanding how they have coped with difficulties in the past, where they feel competent and comfortable now, and where they might need extra support; making referrals, and suggestions about how and where they might get emotional support here and in the community; helping families think through what they or we believe they may need in the way of assistance; and providing psychoeducation, a kind of road map, about what they might anticipate related to the physical and psychological needs of the patient and family members as they make the transition from one phase of treatment to another or as the child grows. - Roberta Hoffman, LICSW, Kidney Transplant Social Worker
How Much Should You Tell a Child about a Transplant? I think that every kid is different, but that often kids will do much better than their parent thinks that they will do. I think that it is always a shock to parents. Obviously, it’s important to not lie to kids either. You don’t have to be gruesome, but it’s important to let them know what is happening. Often kids wonder if someone has to die in order for them to get their heart; be honest, but age-appropriate. It is a parent’s decision what their child can hear and how, but I think that kids do better if you give them a little bit of respect and benefit of the doubt, and let them navigate it a little bit. Know that telling them about it is probably going to be worse for the parent than for the kid. Ann Rounseville, LICSW, Heart Transplant Social Worker
Returning Home After a Transplant I tell people after transplant to know there will be bumps in the road, but there are people there to help you and to help you learn what you need to learn. You’ll learn how to teach your kid to take all of the meds, to deal with their mood swings because of the steroids, to get back into a routine, and the proper way to discipline kids who have been through this. It’s not easy to get back into the swing of things, but it’s possible! Another thing that is hard is that a child goes through this, gets out of the hospital, and everyone wants to see the child, but that can’t happen. It’s really hard for everybody concerned, and people don’t understand that, especially if it is not a toddler but a school-age child. You can’t have neighbors or multiple family members coming over, and to have someone else explain that to them is often very helpful. I have given people a stack of my cards and said, just hand them out. Try to take the entire burden off of yourself, because you’re going to have enough to do taking care of yourself and your immediate family. Ann Rounseville, LICSW, Heart Transplant Social Worker
Yes, it’s a very frightening process: it’s a fairly big operation and undertaking. But there is a light at the end of the tunnel. Kids go from being seriously ill to pretty good, and having close to normal lifestyle in not too long of a time. I describe it to them as a rollercoaster: there are some pretty high ups and some pretty down lows that you’re going to have to get through, but we’ve seen most of it before, and we’re here to help them deal with it. They’re not alone; there are services for family members as well as support for parents. And education is power; we want them to be very educated about the procedure, the medications, and so forth. We’ll give them time and energy so that they get to feel comfortable with everything. Maureen Jonas, MD, Physician, Liver Transplant Program |
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
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