‘We try not to limit them’: Striving for normalcy key for children with rheumatic diseases

ORLANDO, Fla. — Allowing children with rheumatic diseases the time and space to formulate their own thoughts on their condition can facilitate communication and help them live a normal life, according to a presenter.

“We are going to talk about how we prepare our families and our kids in everyday life,” Barbara Kienzle, BSN, RN, a pediatric rheumatology nurse clinician at Augusta University’s Children’s Hospital of Georgia, told attendees at the 2024 Rheumatology Nurses Society annual conference. “We will talk about some pearls for helping pediatric patients and families navigate the day-to-day.”

Kienzle, a member of the RNS board of directors, asked attendees to outline some of the obstacles that patients with pediatric disease face. Suggestions ranged from standard childhood and adolescent challenges like school, friends and jobs, to more rheumatology-specific concerns like medication management, travel requirements to see their physician, vaccine hesitancy and transitioning to adult care.

Meanwhile, for parents and caregivers, chief obstacles can include guilt, missed work, grieving the loss of normalcy, cultural stigma, and fear that their child will not live a normal life.

Kienzle suggested that striving for normalcy should be the goal of both patients and their families. For example, parents of children with chronic or autoimmune conditions should continue to set expectations surrounding chores and other activities.

“We have all experienced those parents that want to bubble wrap the kids until they never leave home,” she said.

Leaving home and participating in regular activities is essential to managing their conditions, according to Kienzle.

“We like our kids to be in school because they need the socialization,” she said.

However, parents also need to recognize when their children with these conditions require intervention, particularly in school.

“What we have to remember is that not every school counselor, nurse or teacher understands that these children have to go to school and their right to be educated is protected,” Kienzle said. “Do not assume every school system knows about lupus or JIA.”

Communication surrounding medications and disease activity is also critical.

“You have to tease out whether the fatigue is from the lupus or from being 16 years old and being up all night on the computer or TikTok,” Kienzle said.

Sports are another big concern for pediatric patients. Although organizations like the American College of Rheumatology often recommend low-impact activities like aquatics, swimming, cycling, yoga and tai chi, many young patients are keen to play tennis, soccer, football or other high-impact sports.

“We try not to limit them,” Kienzle said. “We try not say, ‘This is it, this is your list.’”

Moving away from these specific issues to more general approaches to communication, Kienzle recommended the “normalize, ask, pause and connect” strategy for speaking to pediatric patients and their families.

“Children want to know that what they are feeling is OK and normal,” she said. “You are not alone and you are not wrong.”

In addition, asking open-ended questions can often lead to deeper communication.

“Ask, ‘How is this affecting you?’” Kienzle said. “What are the thoughts you are having late at night? What are you telling your friends about your condition?”

The “pause” component is a suggestion to be quiet and allow the patient to answer.

“Do not fill the awkward silence,” Kienzle said. “Give them the chance to figure out what they want to say. This will lead to how much they will trust you in the future.”

Finally, Kienzle suggested that connecting patients and families with other patients and families going through similar challenges can be enormously helpful.

“Or connect them with a social worker or school counselor,” she said. “Always thank them for sharing their feelings and let them know this is a safe place for them to do it. Let them vent. Let them figure things out. You are not going to do it for them necessarily but you are going to help them along that journey.”