A group of teenagers are laughing, dancing to a DJs' thumping music, snacking and playing party games. It may sound like your average high school party, but the teens at this particular get-together are actually in Children's Hospital Boston's Patient Entertainment Center dancing carefully around their IV poles, shooting ping pong balls into cups in their Johnnies and stringing beads around their wheelchairs. It's a Teen Advisory Committee (TAC) party, one of the four most anticipated events of the year for adolescent patients at Children's.
Six years ago, three Child Life Specialists and two Center for Families (CFF) employees realized that many adolescent inpatients had unique needs that weren't being met. They proposed a TAC so that teens could voice their ideas to improve their hospital experience. "Teens have opinions but they're not always comfortable talking with adults," says Miranda Guardiani, MS, CCLS, Child Life Specialist on the adolescent unit. "Creating a team of peers who can listen to teen patients' needs, get their voices heard and get things accomplished has been really important."
TAC members pour their energy into various teen-focused projects. They get to know hospitalized teen patients during the events they throw and survey them about their hospital experience. "Adolescence can be hard, and it can be even harder for patients," says TAC member Gillian Simmons, 21, who has been a part of TAC since 2004. "Illness can make insecurities, like a teen's changing body image, worse. And teen patients have to explain treatments and diseases to friends and cope with uncertainties."
The committee is made up of about 13 current Children's patients ages 13 to 21. The members are from different backgrounds and cultures and didn't know each other before coming to Children's, but through TAC, they've become a close-knit group.
"We all have so much fun at the meetings," says 19-year-old TAC member Julienne Gilman. "And since we know first-hand what these patients experience, it gives us better insight into how we can make it better." Most of the TAC members are followed in the hospital's speciality clinics for chronic illnesses and many have experienced at least one inpatient hospitalization. Despite their familiarity with the hospital, the teens don't discuss their own medical issues during the monthly TAC meetings. "They focus on the healthier side of life and it gives them an opportunity to focus on everyday adolescent activities," says staff facilitator Christine Rich, RN, MS, of the CFF.
TAC's first project was funded by the foundation of former New England Patriot Lawyer Milloy. Some of the money went towards a teen-only activities cart, complete with portable video games, movies, music and crafts for teen volunteers to bring to adolescent patient rooms. Since then, TAC has received funding from the Children's Hospital League and worked on a number of other projects, including a special instructional video for teen volunteers entering a teenage patient's room. The video offers six skits with tips for handling situations that teen volunteers might encounter when entering another teen's room, ranging from what to do when a patient is shy, asks for your personal information, gives you uncomfortable information or makes a questionable request, like asking for food when they're on a restricted diet.
All of the scenarios were developed by the TAC members based on their own experiences. As Rich explains it, she and Guardiani, along with Ellen O'Donnell, RN, MSN, CPNP, Jessica Strzelecki, BS, CCLS, and Adrianne Goncalves, BA, are simply facilitators who help the teens' ideas come to fruition. "Adolescents don't want to be treated like kids, so who's better to help them feel respected, listened to and supported than adolescents themselves?" says Rich. "TAC helps them to be taken seriously."
TAC members believe that for adolescents to be ready to take over decision-making about their care as they become adults, it's necessary to involve them in treatment decisions at an early age. In order to determine whether other adolescents, their parents/guardians and health care providers agree with this premise, TAC teens administered confidential surveys to each of these key groups. The project is on-going and the results will be used to develop fact sheets for health care providers offering tips for how to actively include adolescents in health care decision making.
While hard work is certainly part of TAC's mission, they do like to have fun and just threw one of their biggest annual parties, themed Hollywood in Boston, complete with Guitar Hero stations. Now they're gearing up for their next party on April 8, which is their favorite: a Casino Karaoke party with sing-a-longs and casino games. "I'm always amazed at how resourceful, creative and bursting with excellent ideas and enthusiasm the kids are," says Rich. "The committee is a wonderful combination of project work and fun."