Having a child with a life-threatening disease is stressful. Handling day-to-day issues during treatment shouldn’t be.
When patients and families arrive at St. Jude Children’s Research Hospital, they’re enfolded in a warm blanket of care and concern. Breathing a sigh of relief, they learn they’ll never receive a bill for housing, food or treatment. Then they discover their St. Jude family will walk beside them every step of the journey, help alleviate their stress and assuage their worries.
“Our experience at St. Jude has been amazing,” says Josh Bush, whose daughter, Bella, has undergone treatment for the brain tumor astrocytoma. “It’s almost too good to be true. The care, the compassion, the relief of financial burden—everything is done with excellence.”
This dedication to patients and families is woven into the fabric of St. Jude.
“The patient and family experience has always been everybody’s job,” says Janice English, RN, director of the hospital’s Patient and Family Experience Office, “and we want to continue to improve.”
The hospital’s strategic plan includes a blueprint for doing that. The plan has already begun to unfold, with many new amenities, including state-of-the-art inpatient units, dramatic housing renovations and the addition of apartments designed to accommodate larger families.
St. Jude is currently exploring 87 additional ideas and projects suggested by patients, families and staff. Those suggestions include a “Town Square” within the hospital where families can shop, snack, make travel plans, attend school and handle other basic needs. And a new patient app in development will feature wayfinding functions, disease information, appointment and prescription alerts, advice for new families, special event notifications and many other features.
By listening to concerns and anticipating needs, St. Jude staff members continue their quest to reduce the stress and anxiety of patients and families.
Here are a few of the most recent projects and activities to elicit smiles from St. Jude patients and families:
1. At your service
When a child is sick, parents may not have the time or energy to run errands, mail packages, shop for personal items or take their cars in for oil changes. The hospital’s new concierge service offers assistance with those kinds of non-medical tasks. The service is free to families, who pay only for outside goods or services purchased.
While 4-year-old Hannah Boyer whirls around Target House like a tiny tornado, her mom greets concierge staff member Erin Clemens, who delivers groceries for the family. Because Hannah recently underwent a bone marrow transplant, the little girl must avoid public spaces where germs and viruses lurk. As a result, her mom has enthusiastically embraced the hospital’s concierge service.
“It’s amazing the things St. Jude does and comes up with,” says Chandra Boyer. “I can’t take Hannah to places like the grocery store. But now I can order my groceries online and have the concierge bring them to me. That’s really cool.”
2. Nature’s balm
As clinicians and researchers hurry down a hospital corridor, they glance over at 9-year-old Miller Calhoun, who is blissfully unaware of their presence. Miller is searching for butterflies and hummingbirds in a tranquil pocket garden tucked between buildings on the St. Jude campus. A giant glass wall protects the boy from bee stings, dust mites and inclement weather while allowing him to savor a visual feast of color and movement. As he contemplates the lush blossoms and the water cascading from a lotus-flower fountain, Miller can take a mental break from his treatment for acute lymphoblastic leukemia.
This tiny garden is only one of many campus features to provide patients and families with a welcome distraction from the challenges of treatment.
3. Time for self-care
Sometimes caregivers need a little TLC—a brief break to check emails, wash clothes, run errands or make personal phone calls. That’s why St. Jude offers short-term babysitting services. If a child is inpatient, a parent or grandparent can call on the hospital’s Helping Hands program to provide free respite care. Recently, the hospital also added a babysitting service at Target House. Fully licensed and certified sitters are available to play with children for group sessions once a week.
“I’ve used the sitter service three times,” says Tom Campbell, grandfather to 9-year-old David. “Except for when David’s in school, he never leaves my side. The sitter services give me a couple of hours occasionally where I know he’s safe and I can have an adult conversation or get a little break.
“I can’t say enough about St. Jude,” Tom continues. “It’s the most incredible place. It would be hard to describe the depth of my gratitude for St. Jude and the awe of what they do and how dedicated these people are.”
4. Crucial conversations
Five-year-old Luke Blank has a direct line to the top, and he’s not afraid to use it. During Luke’s first week at St. Jude, he and his mom attended Coffee with the CEO, a monthly event in which patients and families offer advice and input to James R. Downing, MD, the hospital’s president and chief executive officer.
Weeks later, Downing was waiting for an elevator when he glanced down to see the little boy, who is undergoing treatment for a brain tumor called anaplastic ependymoma.
“Can I see where you keep all the security cameras?” asked Luke, who wants to be in the FBI when he grows up.
“Sure,” Downing responded. “Tell your mom to email me, and I’ll make it happen.”
“I thought it was amazing that with so many children and families here that Dr. Downing remembered us,” Wendi Blank says. “But everyone—and I mean everyone—at the hospital has been wonderful from the moment we arrived. They make sure you’re taken care of. As hard as it is to be away from our family, I’m so happy we’re here.”
5. Freedom to roam
Sometimes families need a change of scenery. Wouldn’t it be nice to run errands, visit the zoo or attend a sporting event? Zipcars® at the hospital provide families with the freedom to roam. The hospital covers the cost of registration and other fees; families pay only for the number of hours they use the vehicle.
When Josh and Jennifer Bush brought their daughter Bella for a checkup recently, they took advantage of the new service.
“A lot of families may not be able to afford a rental car, but they could take the Zipcar for a few hours to get things done or to get the kids off campus for a while,” Josh says. “Those are the kinds of things that add to the excellence of what St. Jude accomplishes in treating the whole family. They seem to think about things that other hospitals don’t think about.”
6. Partners in planning
When St. Jude designs new construction projects, they turn to the undisputed experts—patients and families—to suggest improvements and innovations for future St. Jude patients.
Recently, dozens of parents and grandparents gathered for an evening of brainstorming. During the session, Sonia Black and other caregivers offered opinions and suggestions to Janice English, RN, director of Patient and Family Experience. The group’s suggestions will be considered for a new housing facility to be located adjacent to campus.
In addition to providing a way for families to give back to St. Jude, events such as this one provide a sense of empowerment, enhance communication and cement the partnership between patients and staff.
From Promise, Autumn 2017