On June 3, 2012, Zion’s hearts were beating – both of them.
It was just a matter of time before the heart he was born with would fail because of restrictive cardiomyopathy, a condition he’s had since birth. The wait for a new heart for Zion was long and scary, but when a match became available, June 3 became his heart’s new birthday.
Zion, and his younger sister Zhania, both battle this heart condition and sickle cell disease – a genetic blood disorder that causes red blood cells to form into sickles that block blood vessels all over the body.
As they walked through the halls of Cincinnati Children’s that morning, Zion’s parents, Demetria and Nathaniel, were scared. While they had complete confidence in the doctors, nurses and everyone who had a hand in Zion’s care, it was the first time cardiac surgeons here would perform a heart transplant for a child with sickle cell disease.
Luckily, Cincinnati Children’s is here for the whole family. Family-centered care is the hallmark of the Cincinnati Children’s experience, and Zion’s care team made sure that Demetria, Nathaniel and their other children received the support they needed.
“All the extra support helped my husband and me feel more comfortable with the whole situation,” Demetria says.
That comfort-level continued when Zhania received her new heart just two months later. Demetria says she wouldn’t trust her children’s lives with anyone but the world-renowned experts at Cincinnati Children’s.
Trust in the work we do is extremely important. To continue to strengthen the confidence families place in us, we recently created a new position as part of our commitment to family-centered care – the patient experience officer (PEO).
Building On a Strong Foundation
Anne Boat, MD, became Cincinnati Children’s first PEO last November. Boat was already very well acquainted with the care Cincinnati Children’s provides, as both a staff anesthesiologist and a mother – her daughter was treated here for cancer more than 10 years ago.
Boat keeps that experience in the forefront of her mind and her heart as she provides care for her patients and works toward improving other families’ experiences at Cincinnati Children’s.
“I’m really ideal for this role because I’ve worn both hats,” Boat says. “I can see things from the care provider perspective, but also as someone who is coping with a sick child.”
Boat’s goal is simple – to make sure Cincinnati Children’s provides the best care and experience possible for families – but it involves the participation and support of everyone in the medical center, regardless of their role.
“We already have a long-standing culture of family-centered care,” Boat says. “Now we want to find what we need to do to make improvements to that foundation.”
Family input plays an important role. From the number of times care providers come in and out of a room to the greeting families receive when they enter the door, Boat’s team is listening to the feedback families provide through surveys and advisory groups like the Family Advisory Council.
“Looking at a hospital stay from the care provider side, we thought spending more time in a patient’s room was providing better care,” Boat says. “But, families told us that while they are here, their hospital room is their home. They don’t want people coming in and out all the time. That feedback was so wonderful because that was something we could improve upon immediately.”
A Home Away from Home
Cincinnati Children’s recently opened its new Family Resource Center (FRC). Located at the heart of the main campus, the center offers a respite from the hustle and bustle of the hospital.
“Before relocating the center, the location was not convenient for families,” says Marty Goodfriend, RN, BSN, MEd , director of Family Relations. “The new location will provide families ease of access to the center and demonstrates the organization’s commitment to supporting families during their stay.”
After consulting with patients and families, the FRC was designed as a space to relax and get away. It was designed “by families for families” says Dave Krier, vice president of Family Relations and Access Services.
It is also a one-stop-destination for families where a variety of non-clinical support services are available. Families have access to computers and the internet, and faxing and copying services. Staff in the FRC can assist families in finding information on diseases and diagnoses, billing and financial support, and more.
Guest Services will also be located in the new center, providing information about local attractions, restaurants and lodging options. The staff can also help families connect to other support services. And, there is dedicated space for the new Family Learning Center where families can learn what they need to know before discharge.
Demetria is hopeful that her days in the FRC are behind her, but she was grateful to have its services when she needed them.
“It was really nice to have a place to go to send a fax, check email and do the things that need to get done,” Demetria says. “Sometimes you just need to get out of the room and take a breather. The Family Resource Center provides that.”
“We are excited about the new space, its amenities and the ongoing opportunities to develop new support programs and services to serve families,” Marty says.
Meeting Unexpected Needs
Every day, we work to demonstrate our commitment to families – from hiring compassionate experts to updating our facilities, to testing new avenues for family and care provider interactions. But, at the end of the day, sometimes it’s the little things that matter most.
Zion’s care providers didn’t want him to miss a thing while he was in the hospital. They even helped organize a family celebration.
“My birthday was just a couple days after Zion’s surgery,” Demetria says. “The nurses found out about it and helped put together a birthday party in a room nearby. It’s things like that that make everything a little easier to deal with.”
Boat wasn’t surprised to learn about the birthday party. “We provide expert care,” she says. “But people want to have a good experience, not just a positive outcome. We want to be the leader in improving health and the experience.”