Delivering a special kind of care

Kathy Whiteside and Racheal Niensteadt had a meeting to get to, but there was an important stop they had to make first: It was a teenage stroke patient’s birthday, and they wanted to join the nurses and music therapists to sing “Happy Birthday” and deliver presents.

The stop delayed the meeting by just a few minutes, but before it even started, Whiteside said she’d have to leave right as the allotted time was up. She had to meet with parents who had recently learned their 4-year-old had cancer. The parents hadn’t yet explained the diagnosis to their child, and they asked Whiteside to tell her for them because “they just couldn’t find the words,” she says.

“That’s what we do, we have to be there when they need us,” Whiteside explains.

Whiteside and Niensteadt are members of the Child Life team at University of Iowa Stead Family Children’s Hospital, a group of 11 certified specialists designated to focus on meeting the emotional and developmental needs of pediatric patients and patient families.

That day of the meeting emphasized how a Child Life specialist’s day can change from hour to hour. “Child Life really gets to help those kids at whatever moment they are in with their health care journey,” says Tami Pollari, director of Patient- and Family-Centered Services at UI Stead Family Children’s Hospital. “There are times of great sadness and there are times of celebration, and those times can happen in the same day.”

On the surface, Child Life specialists interact with patients and their families in ways that put them most at ease – they play games, they have cookie-making sessions, they watch movies or listen to music. Many of the specialists carry “toy bags” with them, filled with small toys, balls, rattles, and other things to occupy young minds. Many public images showing Child Life specialists interacting with patients and families involve games and other social activities.

But at a deeper level, those activities and interactions are more than just games and social events.

Whiteside and Niensteadt work mostly with pediatric oncology and critical care patients, those kids who may be long-term patients coping with frequent, often lengthy, hospital stays. Most of the things they do with patients center around building trust.

“It might look like you’re just playing cards with someone, but what you’re really doing is building a trust-based relationship with that person,” Whiteside says. “When they go home and then come back in, they want something that is familiar to them, someone they know. Then if something with their health turns or something happens, there’s someone there who understands and who they know.”

The Child Life team at UI Stead Family Children’s Hospital has 10 full-time members plus a number of part-time student assistants and volunteers. Each team member brings their own skill set, and they are each assigned to certain floors or units, including the outpatient Pediatric Specialty Clinic. While a patient may interact with several members of the Child Life staff at different times, each child has a primary Child Life specialist that becomes a member of that patient’s – and that family’s – care team.

“So much of Child Life is relationship-based, developing that mutual trust and respect with both the patient and the patient’s family,” says Gwen Senio, Child Life manager and a certified Child Life specialist. “I think the skills our team has in building those relationships are remarkable. The family and that child have that trust.”

“We’re there to reduce the stress and anxiety the patient and the patient’s family experience while they’re here at the hospital,” says Ben Miller, who has been part of the Child Life team at UI Stead Family Children’s Hospital since 2010.

For Melissa and Chris Anderson of Muscatine, members of the child life team gave them comfort and reassurance as their young daughter, Ainsley, dealt with respiratory distress issues.

“Oftentimes when we are in-patient, even though Ainsley isn’t able to participate in the floor activities, Child Life always stops in and makes sure she’s OK and that we are taken care of,” Chris Anderson says. “It’s a very reassuring feeling knowing what’s available to her.”

Relieving the stress for patients often means making them more comfortable and knowledgeable about procedures and tests. For young children, Miller uses dolls and play medical equipment to not only explain the procedure but to let the child “practice” the procedure on the doll. For teen patients, he says it’s more about answering the questions they have and, sometimes, just being with them through the procedure.

“The older patients have the same worries and anxieties as the younger ones, but it’s different because they understand what is happening, they know what’s coming,” Miller says. “People don’t think they have the same worries as the younger patients, but they do. The difference is they have the words to express those worries and ask those questions.”

Keeping life as normal as possible for patients can also help keep the anxieties down, Niensteadt says, and helps patients and families cope.

“When we have teenagers in the unit we try to have a ‘teen group’ without really calling it a teen group,” she says. “We get the older patients together to do something – watch a movie, play games, just have some time with kids their age. At first, it just seems like a fun activity, but the conversations that come out of those groups are amazing. Once we had a couple girls at different stages of their cancer treatment, and they talked about hair and wigs with one girl who was nervous about losing her hair. They supported each other.”

As strong as the child life specialists are for their patients and patient families, they are also supportive of each other. Many patient stories have positive, healthy endings, but not all do – and the Child Life team is with all families through the entire journey.

That can be difficult at times, says Whiteside, who has been a member of the Child Life team for nearly 30 years.

“Just watching another human being suffer can be hard,” she says. “When I see a seemingly healthy-looking child walk onto the unit with their mom and dad, and even without knowing them yet you know something they don’t.  You know what lies ahead. It doesn’t seem fair. Their life is about to change, and it’s nothing you can ever prepare for.”

“It’s really humbling for us that the family allows us in during those moments,” Niensteadt says.

But even the tough times can have positive outcomes, Miller says, and those moments are the ones he appreciates most.

“Sometimes you have a patient who is really stressed out and worried about a procedure or something that’s going to happen, and you help them work through it, you help them understand it and you sometimes hold their hand,” he says. “You see them having a hard time, you see their anxieties, but when it’s over they come out and say, ‘That wasn’t so bad.’ You know you helped give them that strength and that courage.”