Wednesday, July 19, 2017
For individuals between the ages of 13 and 19, the struggle to establish personal identity and independence is real and ongoing. But former teen patients like Danielle DiGirolamo, 15, of Sterling Heights and Sophia Lee, 16, of Frankenmuth, are finding ways to express themselves while improving the experience of care for others via the Teen Advisory Council at Beaumont Children’s in Royal Oak.
During the past 18 months, both Sophia and Danielle have had multiple surgeries and follow-up treatment to correct scoliosis.
When they learned about the Teen Patient and Family Advisory Council, they jumped at the opportunity to share ideas and feedback.
“I just really want to give back to other people,” said Danielle, a sophomore at Regina High School in Warren. “Being in the hospital is scary. But it’s manageable. I want to give others hope.”
Both she and Sophia said monthly council meetings provide a positive outlet for previously bottled-up feelings of fear and uncertainty. It empowered them to make a difference for those facing similar challenges.
Being in the hospital is scary. But it’s manageable. I want to give others hope.
Danielle
“Having surgery was very tough - but overall it’s made me a better person,” said Sophia, a sophomore at Frankenmuth High school, who underwent surgery in November 2015 and February 2017 to correct two, 50-degree spinal curves.
“For example, I learned that you shouldn’t make a lot of plans when going to the hospital,” Sophia said. “I loaded my iPod with music and brought a lot of books. But in the end, I just slept a lot because of the medication. I don’t remember it, but my parents said my favorite thing was a station on the TV that played soothing nature sounds.”
Sophia also had specific suggestions for activities for hospitalized teens.“We want staff to know we don’t want to interact with people dressed in costumes, but opportunities to enjoy current music would be great,” Sophia said. “Boys in our group said they’d like more video games. Me personally, I would have loved to have my hair and nails done.”
For Danielle, recognizing staff who do their best every single day to support the emotional needs of teen patients is key. For her, child life specialists in particular provided enormous comfort throughout her stay.
Certified child life specialists are trained to help minimize the stress, anxiety and fear children experience while they are hospitalized through developmentally appropriate play and other support. They also educate and train staff on how to provide a comforting environment.
In addition to staff recognition, Danielle also recommends teenage patients receive additional education regarding medication use.
“It would have been beneficial to receive the same great education and information my parents did,” Danielle said.
Two of the most satisfying council projects she’s participated in, include sharing her story as a panelist during Beaumont Health’s patient and family-centered care conference this past April and contributing to an art project with other council members.
“I would tell anyone who wants their voice heard to join a patient advisory council,” Danielle said. “It’s a great way to share your ideas.”
Sophia also said she was grateful for the opportunity to provide hope to future teens.
“I’ve seen hard things in life now but know I can work through them,” Sophia said. “Maybe if other teens hear that, it will help them, too.”
Child life specialist Kayla Rezmer and her co-worker Michelle Staubach launched the Teen Advisory Council one year ago to support Beaumont’s larger mission to improve the hospital experience for patients and family members.
“This group is really engaged and didn’t ask for much,” Rezmer said. “They had very realistic expectations.”
According to Susan Grant, executive vice president and chief nursing officer at Beaumont Health, the Teen Advisory Council is one of several patient advisory councils recently created to advance Beaumont Health’s delivery of patient and family-centered care.
“It is our goal to provide a healing and collaborative environment in which our patients not only feel heard and supported but are true partners in their care experience,” Grant said. “To that end, we recognize patients and families as essential members of the healthcare team and encourage and enable their participation and collaboration in care.”
“In our continued effort to improve the experience of care, we are committed to partnering with patient and family advisors in everything we do and encourage patients and family members to volunteer with us as advisors to help improve the care experience,” Grant said.