Teenage Patients’ Advisory Committee

Improving the patient experience has been a rallying cry for hospitals. Focusing attention on the needs of the patient is key in a competitive marketplace. Every patient voice matters.

Boston Children’s Hospital takes that to heart with its Teen Advisory Committee (TAC).

“They are a voice for all teens that come here,” said Diane Cella, MSN, RN, CPN, RYT. Cella and Jessica Strzelecki, MEd, CCLS, serve as staff facilitators for the group. TAC, however, is co-chaired by two of its adolescent members. The teenagers decide what the group wants to accomplish each year. They set the agenda based on what is meaningful to them.

Strong Commitment
Teen Advisory Committee grew out of a social group for patients with chronic illnesses. It evolved into a forum for the patients to share their input and impact hospital policy. In April 2016, the group had 22 members ages 14 to 21-including three siblings of patients, since prolonged and/or frequent hospitalizations affect them too. The facilitators acknowledged they are fortunate to have a diverse cohort, with different backgrounds represented.

Each member must present letters of recommendation to join the group and must commit to attending 11 monthly meetings per year. Boston Children Hospital’s Hospital League provides funding for a meal at each meeting and parking vouchers for members.

“One of the most important things that come to mind is the commitment of everyone involved,” Cella said. “They are an extremely motivated group.” The committee has worked both within and outside the hospital to impact change.

Patient Perspectives
At each meeting, a representative from a different hospital department talks to the teens, seeking their opinions on patient experience matters. Cella noted, “There’s a lot of support among leadership for Teen Advisory.”

TAC gave feedback on improving Boston Children’s Hospital’s website and social media accounts, making them more adolescent-friendly. They shared opinions on redesigning patient rooms and also talked with food services about improving dining options. The Hospital League even got the committee’s take on what would make for a teen-friendly fundraiser for the hospital. “Their insights are pretty amazing,” Cella remarked.

Getting that input is important for the hospital. Strzelecki noted, “Many people outside of the hospital think we only see children, but we treat a large number of adolescents. It’s important the hospital takes their feedback to heart.”

Many teens treated at Boston Children’s have chronic illnesses, such as cystic fibrosis. “What can we do as a hospital to improve their care?” asked Strzelecki. TAC took on the issue of transitioning from pediatric to adult care, which is complicated, given all the specialists pediatric patients must contend with. Members surveyed their fellow patients about their experiences and suggestions for improving the process. The results were collected in a booklet titled “One Step at a Time,” distributed free at the hospital and available for download at its website.

Advocating for Better Healthcare
The adolescents’ influence goes beyond the hospital walls. TAC has given presentations to local pediatricians with admitting privileges, encouraging them to refer their patients to become committee members.

In a current outreach project, they are creating a survey on sleep, stress and nutrition to be distributed among their fellow students at their respective high schools. The results will be analyzed and distributed for educational purposes.

On March 29, TAC members participated in Statehouse Advocacy Rounds and Education Day. The event encourages citizens to speak to state senators and representatives about legislation to advance childhood health issues. The teens made videos sharing the issues they are passionate about, including more physical education in schools, an end to e-cigarette use, and greater resources for mental health patients. They also got to sit with their state senators and explain what Boston Children’s Hospital means to them and their families-a powerful experience.

“They are really passionate,” remarked Strzelecki. “It’s a neat way for them to see the process of advocacy.” The experienced helped the teens hone their public speaking skills. Incidentally, several of the committee members have expressed interest in becoming lawyers, so this was an ideal training ground. “They have a voice and it really does matter,” she added.

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Achieving Health and Life Goals
At the end of each year, the facilitators meet with each member one-on-one. They discuss their goals, both for the group and their personal aspirations. Where do the teens want to grow? How can TAC help them achieve those goals?

Helping patients achieve their goals is part of the job for both Strzelecki and Cella. Initially, Strzelecki was unsure about working with adolescents, due to her child life specialist training. “Over time, I grew to be more comfortable working with teens. I absolutely love this population,” she said. She acknowledges that patients sometimes cannot voice their opinions on the hospital floors, and the committee gives them a safe space.

“A big part of my role has been working with adolescents. I love how candid they are,” Cella said. As a nurse, she has witnessed the effects of chronic illness on the whole family. She understands the magnitude of diagnoses and what treatment requires. “Nurses understand the psychosocial perspective,” she explained, making a nurse like herself an ideal facilitator for the TAC. In fact, Cella took over for another nurse, who was the original staff facilitator.

“All the facilitators bring a different strength,” Cella said. Personally, she has a history of working with hospitalized teens. Cella takes advantage of the connections she has built as a nurse-the nurse managers and various professionals in the different departments-to help the group.

“We’re very proud of them,” Cella remarked. Teen Advisory Committee offers its members the opportunity to be more than just a hospital patient. They can affect positive changes.

Danielle Bullen is a staff writer. Email her at dbullen@advanceweb.com

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