SJIA: Caring for the Whole Family

A diagnosis of systemic juvenile idiopathic arthritis (SJIA) can affect the whole family. Shifting roles, new routines and responsibilities, and added financial and emotional stress can all take a toll. Family bonds may be tested, and siblings of children with SJIA may feel resentful and guilty.

"Treating a child with SJIA means caring for the whole family," explains Thomas J.A. Lehman, MD, chief of rheumatology at Hospital for Special Surgery in New York City. "You need to pay attention not just to the child, not just to the mother, but to the entire family unit."

"It's natural and essential for the family to focus on the child with special needs," says Joanna H. Fanos, PhD, a former director of the Sibling Center at California Pacific Medical Center in San Francisco. "But there's a real danger of the other children not feeling loved if they don't get enough time and attention."

Dr Fanos encourages parents and caregivers of children with SJIA to try to give each child in the family some one-on-one time and to constantly reinforce that they're loved. She says professional help may be needed if siblings start acting out, become excessively clingy, or are unusually anxious about getting sick themselves.

Parents of children with SJIA need to take care of themselves, too. Be sure to make time for things you enjoy, spend time with your partner and find positive ways to deal with stress. Keeping family routines as typical as possible and staying organized also help. Perhaps most important, remain positive and find support from other SJIA parents you can connect with.