Setting the stage for medical independence

by Boston Children's Hospital staff on November 3, 2011

By Kitty O’Hare, MD, coordinator of Transition Medicine at Martha Eliot Health Center

I see this story play out over and over again in my clinic:

A 15-year-old comes to the office for an asthma visit. The teen is glued to their cell phone, iPad or PSP from the moment they enter the exam room. Every time the provider asks about medication use or frequency of symptoms, the parent jumps right in with a ready answer while the teen stays in their electronic universe. Even if the provider tries to engage the teen directly, only one-word answers or grunts are given. By the end of the visit it is obvious how much (or little) the parent knows about asthma, but it is less obvious how much the patient knows about their disease.

Parents are wonderful health advocates for their children. I tell parents that they know their child much better than I ever could. Parents make all kinds of decisions for their children every day, but unlike deciding on pizza vs. chicken fingers for dinner, healthcare decisions literally can be matters of life or death. So it is very hard for parents to hand over control of healthcare to their children.  But it is important for children, teens especially, to learn to take control of their health. Here is how parents can help:

Step 1: Teach children to understand their bodies.

This is a key area of child development. We teach toddlers to name their “head, shoulders, knees and toes,” but sometimes the learning stops there. As children grow, it is important to reinforce the proper names for the parts of the body as well as some basics of their function. Very few people can describe the inner workings of the cardiovascular system, but even a small child can learn that the heart pumps blood throughout the body, or that everyone has two lungs. Parents can teach children how everyday decisions affect their body, for example, that drinking milk gives you calcium and Vitamin D for strong bones and strong teeth.

Kitty O'Hare,MD

Step 2: Encourage independence at the doctor’s office.

Children of any age can participate at the doctor’s office. Before walking in the door, parents can set expectations for the visit (put down the cell phone!). Parents can encourage a young child to answer the doctor’s questions first, then clarify as needed.  Teens should have the chance to talk to their doctor alone, without the parent in the room.  Doctors often consider this “alone time” to be confidential unless the teen is at direct risk of hurting themselves or others. It can be nerve-wracking for a parent not to know what their teen is saying, but this is an essential move toward healthy independence.

Step 3: Empower youth to be the managers of their health.

If a child has a chronic disease, knowing the name of that disease and some basics of how it affects the body are very important. If they are in an emergency situation and a parent is not around, children should know how to ask for help. Over time, youth can and should learn the names of their medications, why they take medication and how to get refills. By the time they graduate high school, teens should feel comfortable setting up appointments and calling the doctor if they have questions. No matter how complex the disease youth can learn to manage their condition, whether they have asthma or diabetes or epilepsy.

Of course, some youth might need help, especially if they have a learning or developmental disability. But many young people are experts at managing their lives despite a disability. For example, a kid who uses a communication device can have a prompt that speaks their medications. A teen in a wheelchair can teach a nursing assistant how they want to be lifted onto an exam table. Everyone should have the opportunity to try to manage their health.

Step 4: Move on to adult care.

Most pediatric practices have an age—like 18, or 21—at which they stop seeing patients. Parents should find out what the policy is at their practice, so that they can plan ahead.  When it comes to picking an adult doctor,a parent’s own physician is a good place to start. Remember too that after the 18th birthday, doctors cannot discuss any health information with the parents without their child’s consent.

Taking steps toward healthcare independence is an important journey for parents to make with their children. Parents want their children to be happy and successful in life.  Teaching and modeling good health are steps in the right direction.

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