Training the ‘inner voice to be kind’ critical for young patients with rheumatic diseases

ORLANDO, Fla. — Cognitive behavioral therapy can help children and adolescents with rheumatic diseases cope with the challenges of their condition, according to a presenter at the 2024 Rheumatology Nurses Society annual conference.

“Coping skills are strategies we use to manage feelings and handle stress,” Polly Livermore, PhD, a senior pediatric rheumatology nurse at University College London, told attendees. “However, we are not born knowing how to do it. We have to learn coping strategies. If we can teach healthy coping strategies, our patients will become more resilient moving forward.”

According to Livermore, many of young patients with rheumatic diseases have difficulty speaking with their peers because of shyness, stigma or fear, but can speak to adults because they have been speaking with doctors for much of their lives.

“A lot of our patients who are diagnosed at very young ages have a very different view of health care than their peers,” she said.

“However, they really respect the views of their peers,” Livermore added. “Many do not tell their friends about what is wrong with them because they do not want to be perceived as different.”

Livermore stressed that word choice is key in how providers talk to young patients.

“Do not use the word ‘disease,’” she said. “These are conditions that we are looking after.”

The word “failure” is another potential trigger. Providers often talk about failure in terms of how medication performs, but the word may strike young patients differently and lead them to blame themselves.

“They ask how they have failed or what they have done,” Livermore said.

Managing adverse events can also be particularly difficult for pediatric patients.

“A lot of the treatments we give to children are not very nice,” Livermore said.

For these and many other reasons, Shelby Jones, MSN, APRN, CPNP-PC, a nurse practitioner in Sebring, Florida, discussed some coping strategies for pediatric patients and their families.

Jones noted that drinking alcohol, taking drugs or engaging in unsafe sexual behaviors are unhealthy coping mechanisms, while journaling, exercise and listening to music are healthier options.

“Friends can be healthy or unhealthy, as well,” she said.

Jones counseled that rheumatology providers should be vigilant for telltale signs of poor coping, like tantrums or meltdowns among small children.

“Bottling up emotions is a big one, especially for adolescents when they do not feel normal and they want to feel normal,” she said.

According to Jones, it is essential to consider that, for children and adolescents, coping skills are learned behavior. She recommended teaching cognitive behavioral therapy (CBT) to help young patients.

The duration of CBT can range from three to 12 sessions, according to Jones.

“It is a quick, focused intervention that you can use with patients,” she said.

The essential diagram for CBT is a triangle with thoughts, feelings and behaviors at the three points.

“My thoughts affect how I feel, which affect how I behave,” Jones said. “The goal is to learn different ways of thinking to cope better.”

A critical component of CBT is that once patients learn it, they can go home and use it on their own in daily life, according to Jones.

“The focus is on moving forward, not moving back,” she said. “CBT does not focus on the past. CBT focuses on how to change the thinking now. It is just like physical therapy, but for the brain.”

The ultimate goal is to change thinking from negative to positive, according to Jones.

“Most of the things we worry about never happen, but most kids do not know that,” she said.

Jones added that CBT can help pediatric patients with chronic conditions rewire their brains to be kinder to themselves.

“We have that inner voice inside of us,” she said. “We have to train that inner voice to be kind.”