On a Tuesday evening, about a dozen teenagers gather around a table, sharing snacks and trading jokes. Paperwork is being passed around amid the clutter of food. A therapy dog is drawing giggles, as he moves among the legs of attendees, scavenging for cookie crumbs. It's a fun room, but it doesn't take long for this group to get down to business.
The Teen Advisory Council (TAC) is made up of youths, ages 12 to 18, who are interested in helping to enhance the patient experience at Johns Hopkins All Children’s Hospital, particularly the teenager’s experience. They are uniquely qualified, as each one of them is a patient here.
Sixteen-year-old Cole is vice president of the council. He was diagnosed with a malignant brain tumor in 2014. He has been either inpatient or outpatient at this hospital for all of his teen years.
“I’m doing this because when I was in the hospital being treated, the doctors, nurses and staff were truly great,” Cole says. “But there are also some improvements we can make.”
This is only the third meeting of the year, and already, the group has a formidable agenda to tackle. Issues on the table include everything from expanding patient services to advocating for academic policy changes to expanding the hospital’s menu options.
“They are not their illness,” says Renee Savic, child life specialist and a facilitator for the group. “They want the world to see who they really are. They have these amazing ideas, and they have goals.”
Savic says these teens have the same issues that any other teenagers do, including the need for peer support, friendships, getting through school, and being accepted into the college of their choice. What sets these kids apart is that many of them are battling major illnesses, from cancer to heart conditions to kidney transplants, all while fighting to maintain a degree of normalcy in their lives.
This year, the council wants to advocate for greater equity for kids who have to miss many school days, and who, out of necessity, have to complete their work while undergoing treatments, or even while home sick. Certain school rules dictate that students can opt out of final exams if they keep a 4.0 GPA. But only if they don’t miss more than a few days of school. That is clearly not an option for those with chronic illnesses.
The teens also are interested in influencing improvements in the transition away from Johns Hopkins All Children’s to adult care. They want an enhanced support system, and they’d like to start elements of the transition earlier.
This year, the adult Family Advisory Council is trying to learn from the success of the TAC. The teens are already credited with a long list of accomplishments that were initiated last year, including holding panel discussions with medical residents on how to better meet the patients’ needs, working with Adolescent Medicine physicians to get educational material into the teen waiting area in the Outpatient Care Center, and even getting items such as gluten-free pizza on the menu for patients. They had a hand in getting sushi on the menu, too.
Savic sees a maturity in these teens that surprises people.
“They are driven. They are fighters because they’ve had to fight to keep their illnesses at bay.”
“When I was being treated,” Cole says, “I needed to make hard decisions. These are life experiences that shape you into who you are.”
The teenagers are getting the “ear,” and the respect, of the adults around the hospital. They plan to take the opportunity and run with it.
“Johns Hopkins All Children’s is a hospital for kids,” says Samantha, another council member. “Well, we’re the kids. We’ve been impacted personally. If we stand together, they’ll understand us more.”
One fun item on the teens' agenda this year is to expand on the idea of activity kits that are more suited to older kids. They’ve added things like adult coloring books and Sudoku, with more ideas to come.
“Stuff that’s not so toddler-like, and more interesting for our age group, just to get your mind off things,” Cole says.
Among the proposed items in the kit—the ingredients for making their own “slime.” They are still kids, after all.
The Teen Advisory Council meets every third Tuesday of the month. Once a quarter, they meet with leadership of their individual institutes or departments to share and exchange ideas.