In the age of the novel coronavirus 2019 (COVID-19), Stanford Medicine Children’s Health has been forced to reimagine its ability to provide support and care to young patients, especially children with complex chronic conditions who are susceptible to infection, like 12-year-old Denielle Santos.
First diagnosed with rhabdomyosarcoma, and now recently diagnosed with epithelioid sarcoma, a rare soft-tissue cancer, four years ago, Denielle is no stranger to the shelter-in-place lifestyle at the hospital—wearing a mask, constant handwashing, and practicing social distancing—but the state mandate order in March did not make the situation any easier for her and her family.
“Before the shelter-in-place order, both my parents stayed here with me, roam the halls talking to people, and interact with patients in the [hospital] playroom. Now, I can only have one parent, and I am isolated to my room,” said Denielle. “I get it, though; it’s for the protection of the entire hospital. You don’t want to put anyone at risk, especially now during this pandemic.”
Fortunately, the specialists at the Child Life and Creative Arts Department have found resourceful ways to keep patients like Denielle busy and entertained while at the same time helping them cope with their hospitalization and illness.
Providing extra care
Holley Lorber, CCLS, a Child Life Specialist in hematology/oncology, says that working amid the COVID pandemic has given her the opportunity to think outside the box in supporting patients and family members. “As soon as our team was made aware that we might be limited in our ability to provide support to patients in an effort to minimize the risk of exposure of COVID to both patients and staff, we immediately began thinking of creative ways to be able to support patients from a distance.”
By providing play in their room, Child Life specialists help patients process their experiences and provide them with therapeutic play, distraction and relaxation techniques to reduce pain and encourage positive coping during procedures and tests.
During her stay, Denielle had to be ruled out for COVID, similar to other patients on the unit, and needed a COVID swab test, which caused her to feel nervous and anxious. Despite the fact that Holley could not physically be present in the room during testing time, she was still able to provide a continued supportive presence by talking to her from outside the room. “I was able to take what I knew about Denielle, prepare her for the swab, and work with her to devise a coping plan to help minimize her anxiety before, during, and after the test.”
“The first time they administered the test, Holley sat outside of my room and played Pictionary with me on her iPad—I would shout out the answers to her. The second time I had the COVID test done, she did a small dance with light sticks in the hallway,” explained Denielle. “I was happy she was there—she helped take my mind off of it and the process went by faster.”
“I am very thankful for everything that Holley did for my daughter—she went above and beyond,” said Lisette Santos. “I am also thankful on how she empowers Denielle and encourages her to express her feelings.”
It is often through this form of trust that children feel safe to express to their child life specialists any fears or worries they may have, as they would with a close friend.
“It’s good to know that I can count on them, because there were times when my mom would go to the cafeteria or pick up medication at the pharmacy, and Holley would stay and keep me company. Sometimes without someone it can get a little scary,” said Denielle.
Diverting stress and anxiety
Child life specialists aim to help reduce stress and anxiety in patients by utilizing developmentally appropriate education, therapeutic play, and preparation and support during procedures.
“Denielle gets very anxious, especially during the infusions, because she can taste the medicine; that triggers her nausea,” said Lisette. “That is when a music therapist would come in, and the two of them would play the ukulele together. It really helped with her anxiety.”
Seeing the impact that the inadvertent isolation is having on patients, the Child Life and Creative Arts team has come up with new, safe, and creative ways to keep patients engaged and ease feelings of loneliness. These activities minimize patients’ stress and help them cope more effectively.
“Several patients have mentioned being sad that the playroom is closed; however, this has given our entire department the opportunity to bring fun to the bedside and spend quality time with patients and family members,” said Holley. “Our team has worked hard to promote social engagement.”
Making connections
These efforts include expanding programming through Sophie’s Place Broadcast Studio. Currently, kids cannot come into the studio to view live radio shows or join in Story Corner, a space designed to be like a library or an area for storytime. However, they can participate in live programming by calling in, watch National Geographic content with the Hospital School staff, play bingo and win prizes, watch their favorite neurosurgeon take a blind taste test, view TikTok videos, and participate in a virtual book club with other patients.
“The broadcast studio helps me connect with others. Even when I cannot see or talk to them directly, I know we are watching the same show, and I can still interact with them and have fun,” explained Denielle.
Child Life is utilizing the in room iPads so that families can interact with their care team and providing art supplies for patients to use at the bedside. They are supplying toys for kids to enjoy and keep, allowing them still to play in their rooms while the shared playrooms are closed.
“Child Life and Creative Arts is an integral part of my child’s health care recovery process,” said Lisette. “I have witnessed firsthand how amazing Stanford Medicine Children’s Health is handling this pandemic, and the steps they’re taking to keep their patients safe and happy.”
Additional source: The video “My Hero is You” conveys messages of hope, solidarity and empowerment to kids and their caregivers during the COVID19 pandemic.
