The main goal of a Child Life Specialist at Sibley Heart Center Cardiology is to help kids cope with the sometimes overwhelming stressors that come with hospitalization. At Sibley, the care Child Life Specialists provide is family-centered, which means they focus on the whole family including siblings.
Adrianna Roig, Certified Child Life Specialist II, has worked at CHOA since 2017. She spends a good bit of time helping parents talk to their children about CHD and what is happening in their or in their siblings’ bodies.
“Adults often have a difficult time talking about hard things and assume their kids can’t handle hearing hard things. We tend to either oversimplify and not give enough details or we give too many details, and it becomes overwhelming,” Adrianna said. “The bottom line is that kids, just like adults, do better with anticipated stress than unanticipated stress.”
Depending on the age of the patient and siblings, Child Life Specialists will sit down with parents to answer questions and provide resources that outline developmentally appropriate ways to talk to kids. They also can be present during conversations if parents need extra help.
Our ultimate goal is to empower parents to know that they can do it and are fully equipped to have these conversations,” Adrianna said. “It’s about building their confidence.”
Child Life Specialists do their work with patients through play and visual representations, like toys that show how the heart pumps blood or what a hole in the heart looks like. For kids who have a hard time with the hospital environment such as becoming upset when a nurse enters the room, Adrianna provides something positive to associate with those visits, like bubbles or stickers. They also encourage medical play with actual medical equipment on teddy bears, for example, to reveal areas that young patients don’t understand. The staff can then work with them to encourage compliance during necessary medical procedures.
Because of Covid-19, Child Life Specialists are doing less work with siblings at the bedside and more work coming up with creative ways to equip parents to help a heart warrior’s siblings at home.
“A couple of things we’ve done include creating hospital books with pictures to help siblings feel connected to each other even if they can’t visit face-to-face,” Adrianna said. “We use footprint art with babies in the hospital as ‘letters’ to the siblings at home, and books like The Invisible String to remind kids that they are still a family, even if they can’t see each other right now. We also use Facetime, and sometimes parents are concerned about a sibling seeing all the tubes and wires of a hospitalized patient. But they actually do really well with it. They just want to see their brother or sister and know they’re okay.”
Adrianna Roig video: Talking to Your Heart Child and Siblings About Their Hearts