“The test results show...”
From the moment parents hear these words, their emotions run the gamut—confusion, anguish, fear, even a sense of isolation. But then they meet their medical team at St. Jude Children’s Research Hospital, and they realize they are not alone.
Rather than being treated as hospital guests, parents and other family members are immediately placed at the center of the decision-making process. This is the essence of the St. Jude Patient Family-Centered Care program—a collaborative partnership among family members, doctors and staff that ensures a child’s needs are fully met.
“From the beginning, the hospital has been involved with and focused on the family,” says Alicia Huettel, RN, director of St. Jude Family-Centered Care. “But we’ve enhanced that relationship by using families as advisers in many areas of the hospital. We understand the value that partnering with family members on different levels can provide.”
Coffee, conversation and bonding
Through the St. Jude Family Advisory Council, patients and families make creative suggestions and innovative proposals that have far-reaching effects. This group consists of St. Jude family members as well as hospital faculty and staff.
Katie Witsoe has been a member of the Family Advisory Council since 2012, two years after her 5-year-old son, Sean, passed away from a type of brain tumor called medulloblastoma.
Last year she and other council members discussed ways to solicit opinions and ideas about patient care from parents whose children were inpatients.
In response, the council hosted its first Coffee Talk meeting, an informal parent-to-parent social break. During Coffee Talk’s first session, council members learned that parents were interested in discussing their thoughts about the hospital and were eager to meet other parents.
“Going from appointment to appointment, parents really don’t have time to just sit and talk and get to know each other,” Witsoe says. “Coffee Talk gives families an outlet to cope as they meet other families and share their experiences. It really builds a bond.”
On average, 10 parents attend the meetings, alongside three or four Family Advisory Council family members and at least two St. Jude staff members.
“As a council member, I’m able to give back and turn something that was tragic for our family into hopefully something positive that will help other families as they move forward,” Witsoe says. “It’s an honor to be on the committee.”
As one of the pillars of the program, the Family Advisory Council meets regularly to develop opportunities for family members to become involved with the hospital and to discuss ways in which family-centered care can be improved. The council also encourages staff to solicit patient and family input on proposals related to patient-care services.
St. Jude patient Erin Haskins made one such proposal, an idea that will soon benefit patients throughout the hospital.
For nearly 10 years, Haskins has struggled with the side effects of a brain tumor known as a craniopharyngioma. Sometimes those issues required a visit to her local hospital.
“If I were sick and unable to communicate, my parents wouldn’t always know which medications I was taking, and they couldn’t share that information with staff members,” Haskins says. “So I made a laminated plastic card about the size of a dollar bill. It has my medications, administration times and dosages on the front, and allergies and emergency contact information on the back.”
Doctors and nurses at her community hospital were so pleased with the card that Haskins, an aspiring graphic designer, wanted to develop the card for other St. Jude patients. She shared her concept with Huettel, who worked with her on the project’s details.
“St. Jude staff are really open to patient and family input to make the hospital a better place,” she says.
By the end of 2015, Haskins anticipates that interested St. Jude patients will be able to request MedMinder cards. Haskins will design, print and laminate the cards and mail them to the patients free of charge.
“It’s truly a form of patient self-advocacy—being aware of the medications you’re on and being able to tell people about it,” Haskins says. “I hope these cards can be used by patients throughout the whole hospital. That’s my goal.”
Embedded construction consultant
Five years after Chris Bridges’ daughter Khirsten was diagnosed with sickle cell disease, another one of his daughters, Kaitlyn, received the same diagnosis. One day, as he donated platelets at St. Jude, Chris met a Family Advisory Council member, who encouraged him to attend a meeting.
After becoming acquainted with several council members, Bridges eventually decided to join. About three years ago, he became an integral part of the hospital’s design and construction projects, even though he had no prior experience in either capacity. In that role, Bridges attended project meetings to provide input on new inpatient and parent room construction.
“My interaction with the design and construction projects is parent representation,” he says. “From a parent’s perspective, what’s best for them and the patients? What do the parents need that they didn’t have before? And what might help make their stay more accommodating—with the care and comfort of the patient and family in mind?”
Bridges recommends other parents become involved with the council, as well.
“Parents at St. Jude have different perspectives and come from different walks of life, so to have them come together and share their unique opinions on the hospital will not only help St. Jude, but will also help parents and children, in the long-term,” he says.
Thus far, more than 200 current and former patients, families and caregivers have joined an online advisory council known as the Family-Centered Care E-Council.
“Some parents or family members are not in a position to join the Family Advisory Council, so this allows them to share information with one another, discuss various topics through a private, online forum and offer suggestions to staff members,” Huettel says. “It’s a way for us to be as collaborative and inclusive as possible.”
Aside from the E-Council, Huettel also manages the Linda R. Hajar Family Resource Center at St. Jude, which offers access to computers, CDs, books, online medical journals and other resources. The center is open 24 hours a day, seven days a week. “It’s really about helping families stay connected with each other. And because it’s open all the time, they can use the center as a place for respite,” Huettel adds.
The common purpose of each of these initiatives is to create partnerships among loved ones and medical professionals to improve patients’ quality of care.
“Family-centered care is about partnering with patients and families,” Huettel says.
“St. Jude provides the medical expertise,” she continues. “It’s the blending of those perspectives and that knowledge that provides the best care.”
Bridges says the hospital’s environment also fosters positive patient experiences.
“St. Jude is like a home-away-from-home, and doctors’ and staff members’ hearts and minds are dedicated to families and patients,” he says. “I feel like St. Jude really is a family, and everyone involved is focused on taking care of our children.”
From Promise, Autumn 2015