How do you help children take age-appropriate responsibility for their care?
I think PTC has really done a great job at creating a scorecard for our teenagers of what we introduce when they’re 13, and then 14, and then 15, and the expectations for what they need to bring back to us. You need to know your medications, okay, next visit you need to know all your doses, and now you need to know what they’re all for. A lot of these kids that are transplanted at four year olds, when they’re 16, they’ve never really heard about what transplant meant because they were four. So really re-education at every step, so that they understand what choices their parents made for them, and what now they need to do to take care of that.
Elizabeth Blume, MD, Medical Director, Heart Transplant Program
It requires a lot of parenting to get children to be more involved, so it’s about encouraging not only the child themselves but also the family members as well. It may be as simple as having the parents review the names of the medications with their child, or it may be more involved and include having the parents or caregivers supervise while their child helps to fill their pillbox for the week. It really depends on, not just the age of the child, but their own readiness and the readiness of the parents to let the patient begin to take some responsibility for managing their medications.
Jennifer Gilarde, PharmD
We have a new program that we’ve been creating over the last few years called the Adult Transition Program. It basically starts when children are 11 years old, educating them on the importance of their health and what they need to do in order to be independent. We want children to take charge of their care, so we are giving them the information to be able to do that. We’re trying to tell them that it’s a good thing to be independent, and to help the parents allow the child to take some responsibilities. Our goal is that by the time they’re 21, both the parent and child will be completely confident with the patient taking care of themselves: getting their medications refilled; getting lab work independently; knowing what insurance means, what copays are, where they have to go for lab work, how they contact the coordinator if there’s a problem, giving them all of the resources that we can. It’s a good thing that they get older and they move on to an adult facility, they leave Boston Children’s. We want them to be excited about that, not scared and not sad that they’re leaving. Yes, they’ll leave this team, but we want them to feel happy that they’re on their own and they’re able to care for themselves.
Laura O’Melia, RN, MSN, CPNP, Director of Transplant Nursing
We start in a somewhat formalized way of thinking about this with families and with kids by the time that they’re 12. Children can answer questions during their clinic visit they can talk about how they’re feeling, with the parents supporting them, and filling in the gaps. There’s a clinic sheet that families fill out and we suggest the kids fill it out as they reach a point where they can do this.
Most kids have pillboxes that they put their pills in for the week. For younger children, the parents are often the ones putting it together, and then we have them do it with the child, then the child does it himself or herself with the parent checking to make sure it’s going okay. We want to make sure kids are prepared to go to college and live in a dorm if that’s what they want to do, so that by the time they’ve reached that age they know what they need to do and it feels like second nature.
We also talk a lot about their understanding what each of the pills are for, and the implications of not taking them, and the treatments that they’re doing to monitor their health. We work on helping kids start to take increasing control over all their care early on, so the parent can first work with the child, then back off a little bit and monitor, and then eventually monitor from more of a distance.
This includes things like eventually having the teen call in their prescriptions. We don’t expect young children to do that, but as they get older, we work with the patient and families on each of the pieces: understanding their insurance, and keeping track of when they’re getting low on a particular medication, and having conversations themselves with the doctor, understanding the implications of higher risk activities (like alcohol or drug use and unprotected sex).
Lynne Helfand, MSW, LICSW, MPH, Social Worker, Lung Transplant Program