Giving Kids a Role in Their Medical Care

By Mary Anne Dunkin

Each child with juvenile arthritis (JA) transitions into an independent adult in charge of medical care and choices at his or her own pace. A number of factors — including your child’s disease severity, personality and level of development — influence that pace, says Kathleen M. O’Neil, MD, associate professor of pediatrics in the Division of Rheumatology at the University of Oklahoma School of Medicine in Oklahoma City. But there are milestones you can expect and behaviors you can encourage to promote your child’s independence, she adds. Here’s a look at what you and your child should be doing — at each stage — to make the transition from pediatric to adult medical care.

Preschool to Elementary School

Though your inclination may be to protect your child or to do everything for her, children should be involved, as much as is appropriate, in treatment decisions and responsibility for the day-to-day taking of medications, says Dr. O’Neil. Children who grow into confident young adults often remember being encouraged to take a role in their arthritis treatment early on.

Even if your child is very young, consider allowing her to be in the room and in on discussions about treatment with her doctor. Your child is the one with arthritis, so it makes sense that she should hear what the doctor says and have a say in the treatment.

You can also help your child understand his medication and when he should take them. For example, if the drug needs to be taken after eating to avoid stomach upset, explain that to him and encourage him to ask for his medication after eating so he gets in the habit.

Preteen to Young Teen

By the time a child reaches the double-digits, he should be able to learn the names of his medications, the number of milligrams in each dose and the number of doses each day, says Dr. O’Neil. Empowering children with knowledge about arthritis and its management is particularly important in adolescent years, she says. She explains that kids at this age may have trouble accepting that others get to determine whether or not they take medicine.

Once a child knows the names and dosages of medications, he can begin to be responsible for taking them. At first, this may be as simple as reminding your child it’s time to take medication. Later it may mean you put a week’s supply of medicine in a daily pillbox each Sunday night and then check the following Sunday that all the medicine has been taken. Tell your child that you trust him to do his own care with a little help from mom and dad instead of trying to force it on him. 

Between the ages of 13 and 15, your child may want more privacy and to speak to the doctor alone. Some may be embarrassed and have a specific question and want the parent out of the room. Usually by the time a child is 15, Dr. O’Neil asks the child if it’s OK to have the parent in the room during the exam. Often, she talks with the teen alone and then calls the parent back in after the exam. “It takes a little longer, but I think it is better in the long run,” she says.

Older Teen to Young Adult

By the time an adolescent reaches her mid-teens, she should not only be taking her own medications, but she should also be able to start making her own calls to the doctor. “I think it is important if the kid has a flare to call the doctor while mom or dad stands by, but then it’s appropriate to hand to the phone to a parent so the plan can be made,” says Dr. O’Neil.

When a child turns 18, she is an adult in the legal system and can sign herself in and out of the doctor’s office. If she is driving, she may be making her own appointments and driving herself to them. If she wants you to go to the appointment with her, that’s fine, too. It can be helpful to have another adult in the room, especially if there’s instructions about a new diagnosis, surgery or a change in treatment plans. But remember, it’s your child’s appointment, not yours, so let her do the lion’s share of the talking and only chime in when necessary.

Make it something to look forward to: Compare notes about the doctor’s instructions and then spend quality time together afterwards by seeing a movie or eating at your favorite restaurant. 

Finally, the biggest change your teen will face is moving from a pediatric rheumatologist to an internist/adult rheumatologist. Seeing a new doctor can be a tough challenge. But if you’ve been properly prepping her and giving her responsibility all along, the transition should go smoothly.

Offer Positive Support

Maintaining a positive attitude is an important strategy when making these changes and transitions. Be sure to praise your child for taking care of himself to bolster his self-esteem. Arthritis is difficult, and he will face challenges other children don’t. However, positive reinforcement can help your child stick with responsible behaviors and autonomy.

“Make it something the child is proud of,” says Dr. O’Neil. “[You child may think] ‘Yeah, I have arthritis, but I take really good care of my arthritis, and I do stuff most kids couldn’t do.”