Family-Centered Care

A pediatric specialist shares 5 ways to be actively involved when your child is sick

When your child has a serious or chronic illness like cancer, diabetes or inflammatory bowel disease, it's natural to feel a sense of helplessness and fear.

While it may seem like you've lost all control, you haven't. You can, in fact, make a real difference in your child's health.

"Parents know their child best," says Anil Kesavan, MD, a pediatric gastroenterologist at Rush University Children's Hospital. "They know how medications are working and how their child feels every day, and they have crucial insight into their child's lifestyle that only they can provide. That's why families are integral members of each child's care team at Rush."

This approach — known as family-centered care — can help improve your child's health, while also helping you regain some control in a stressful time. Here Kesavan shares five other ways to be actively involved when your child is sick.

1. Use your physician as a trusted resource.

With hundreds of online resources, finding health information is easy. Knowing what to believe, however, is not. A physician with whom you feel comfortable can help you decipher fact from fiction. 

"Don't be afraid to ask questions and share the information you find online with your physician," says Kesavan. "We are here to help you fully understand your child's disease and available medical options."

And if something doesn't make sense, let your doctor know.

"I'd rather explain something 10 times than have a parent and child go home without fully understanding," says Kesavan. "If you don't understand the illness or the treatment plan, it's less likely that you're going to follow the plan properly. I want to make sure you understand your child's disease, why I'm recommending what I'm recommending and, most important, that you believe in what I'm recommending."

Quick tip: Writing down specific questions prior to your child's appointment and bringing them with you can help you remember to ask all of your questions.

2. Keep a symptom journal.

Your child's symptoms may come and go. Writing down how your child is doing each day — whether they are symptomatic or not — can help provide a broader picture of your child's overall well-being. It can also reveal triggers — such as foods, medications or sleep habits — that bring on, exacerbate or even relieve symptoms.

"Often kids may not have symptoms every day; they may only complain of symptoms a couple of times a week, which makes it hard for parents to identify a pattern," Kesavan says. "But when you actually write it down, you may be able to see a pattern, which can be very helpful when it comes to addressing symptoms."

Quick tip: Share the symptom journal with your child's care team to help them gain a more in-depth picture of your child's health and day-to-day life.

3. Think beyond physical symptoms.

Chronic diseases and hospitalizations can take an emotional, social and developmental toll on kids. Talk to your child's physician about additional services, including psychological support, physical or occupational therapy, and art or music therapy.

Support groups and foundations that bring together kids who have similar conditions can also help. "These can also help normalize what the kids have, rather than them feeling alone with their condition," says Kesavan. "It gives them a chance to see there are other kids who have what they have and that there's nothing wrong with it."

Kesavan often connects his patients who have inflammatory bowel disease with the Crohn's and Colitis Foundation of America, which has a summer camp and other activities for the kids. Other organizations offer camps, support groups and activities for children with cancer, congenital heart disease, rare genetic disorders and more. 

"It is really powerful for a child with a chronic disease to get to know other children with the same disease," Kesavan says. "This can provide them with a strong support system where they can help each other."

Quick tip: Help your child find ways to make and maintain friendships through new activities and opportunities that allow them to spend time with their peers. If you're not sure where to start, ask your doctor or social worker to help you connect to groups in your area.

Teaching children early on to be responsible for taking medications and making healthy choices will help them manage their illness and their overall health as they get older.

4. Teach your child about their condition.

When your child has a chronic illness, it’s never too early to talk to them about their condition, medications and treatment plans.

"Teaching children early on to be responsible for taking medications and making healthy choices will help them manage their illness and their overall health as they get older," says Kesavan. "If they are invested in their health, they're more likely to be open and honest and make good health choices.

Quick tip: Help your child prepare for treatments, tests and procedures by talking to them about what is going to happen, rather than letting them imagine the worst. For more tips and information, you can also contact Child Life Services at Rush.

5. Keep lines of communication open

"Communication works both ways: I have to be honest in terms of what I feel is best for your child, and parents have to tell me what they think as well," says Kesavan. "It's important for parents to be very clear in terms of what their expectations are."

This communication is not limited to your child's appointment. In fact, Kesavan urges his patients' parents to let him know about any changes or concerns rather than waiting for the next appointment.

"If I recommend a treatment and it isn't working, I don't want them to discontinue it or wait until the next visit to let me know it's not working," he says. "I encourage parents to call me or send me an electronic message through MyChart, so we can address it immediately."

Quick tip: Be as specific as possible when communicating with your physician via email or over the phone. The more detail you provide, the better your physician will be able to address it.

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