Parents should seek information about the disease process and the treatment plan. To build resilience, a family should develop a shared understanding and acceptance of illness, advises The Child Illness and Resilience Program.
Become part of the healthcare team
Encourage your child to take an active role in their own heath care by being an active partner yourself. Start by learning the names of all members of the pediatric rheumatology team. This small step will help you and your child feel more comfortable asking questions and voicing concerns.
Present a united front
Parents – both those living together and those who are divorced – need to get on the same page when it comes to a treatment plan, encourages Roth-Wojcicki. Your child should not see you disagreeing about the best path forward.
Be supportive of treatment plan
Once parents, step-parents and grandparents have come together in agreement or compromise about a treatment plan, then everyone needs to support the plan. The child should not think, “I’ll go to grandma’s this weekend, she won’t make me take my shot.”
“Provide age appropriate education to your child regarding their disease process and the treatment plan,” advises Roth-Wojcicki. If a procedure is going to be uncomfortable or scary, be honest about it, but don’t over-hype it either. Children can usually handle an unpleasant truth better than they can the idea that their parents are hiding something from them.
Allow your child to make as many choices regarding their treatment plan as possible. He or she may have to have a weekly injection on Saturday, but let them choose what time, which leg, what distraction method, whether to use ice first, etc.
Go to an Arthritis Foundation camp or conference or join a local support group. Not only will the child with JA benefit from meeting kids “just like me,” but parents and siblings can find sounding boards as well.
Maintain child’s identity
Make sure your child remains involved with their peer group and activities. If your child has trouble fully participating in soccer or dance, and that has been an important part of their identity, find a way to keep the connection. Talk with the coach about reducing practice intensity for your child, or having him be a team manager, or changing the role or field position he plays.
Recognize true accomplishments, but don’t minimize them by adding a side comment about their JA. Say, “You played a great game today,” not “You played a great game for someone who’s in pain.”
Talk openly with your children about your feelings as a way to help them open up and talk about their own, says Carolyn Confer, MSW, LCSW, clinical social worker at UPMC Children’s Hospital of Pittsburgh. “They will notice when their parents are angry or sad, and they often know much more than their parents think they do.”
“Take life one day at a time and learn to be flexible,” says Roth-Wojcicki. Adjust the child’s and family’s plans to accommodate flares so every challenge along the journey can be a more positive experience.
Spend time together
The Child Illness and Resilience Program urges families to keep routines intact to provide a sense of stability during difficult times. And celebrate milestones together, like a month with no missed school days, or a sibling’s role in the school play.