Children's Hospital Boston notes that 70,000 to 75,000 children in the United States have a juvenile rheumatoid arthritis (JRA) diagnosis and the disease affects girls twice as often as boys. JRA breaks down into three subtypes. Oligoarticular (also called pauciarticular) is the most common, affecting no more than four joints and targeting larger joints. Polyarticular JRA involves five or more joints and tends to attack smaller joints in hands and feet. The most advanced form of the condition, systemic JRA, affects various joints and organs as well. Limitations and medical treatments for each subtype vary, so parents struggling to explain their child's diagnosis to the young patient need to juggle the child's personality, specific symptoms, doctor input and daily limitations in crafting answers.
Step 1
Discuss your child's condition with his pediatric rheumatologist to understand the exact nature of the juvenile rheumatoid arthritis. Oligoarticular (pauciarticular), polyarticular and systemic forms of JRA present children with different levels of limitation. Be certain to understand your child's specific condition, treatment regimens, and the doctor's prognosis before proceeding to talk with the child.
Step 2
Choose an age-appropriate explanation. Parents and caregivers need to use different approaches for five year olds vs. teenagers.
Step 3
Discuss juvenile rheumatoid arthritis using metaphors the child understands. While doctors explain with complex medical terminology, parents need to translate for the child. Kids Health, in its article "What is JRA?" explains juvenile rheumatoid arthritis in terms of an attack. The site explains, in child-appropriate language, that the body targets healthy cells as if they were foreign invaders, noting that rather than recognizing healthy cells as friends, the body thinks they are enemies and attacks, leading to swelling and pain in the joints. Using similar terms helps younger kids to understand the JRA diagnosis.
Step 4
Offer older children books and printed website materials to read. Tweens and teens will worry most about function and peer relationships. The Arthritis Foundation notes that older children focus on the juvenile rheumatoid arthritis diagnosis in terms of being different from peers, having to take medications and participating in sports. Ask older children to sit down and discuss the condition after reading the materials.
Step 5
Answer all questions truthfully and without judgment. If you do not know an answer, offer to look online for an answer. If you cannot find an answer easily, write down the question for the next visit with the rheumatologist. Be certain to follow through.
Step 6
Explain limitations imposed by the condition, but also give positive reinforcement that during remission, the child can resume normal activity. Highlight special activities that kids with JRA do in spite of illness flares, such as summer camps for kids with juvenile arthritis offered by the Cincinnati Children's Hospital.
