mother and daughter talking on a couch
mother and daughter talking on a couch
mother and daughter talking on a couch

COVID-19 and Immunocompromised Kids: Getting the Care They Need

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Children with chronic or serious illnesses live with a lot of uncertainty, and so do their families. When those conditions cause weakened immune systems, kids can be especially vulnerable, physically and emotionally, during the COVID-19 pandemic. Parents have to balance getting their children the treatment they need with protecting them from infection with the coronavirus.

Lexie DeLone, a child life specialist at Johns Hopkins Children’s Center, talks to parents about how to support their child’s well-being right now. She works with kids who have cancer, helping them understand their treatments and supporting them emotionally through therapy.

How will your child’s treatments be affected?

“Your child’s care team is your go-to resource,” says DeLone. “Ask the team any questions you have about safety concerns or implications for treatment. They will keep you updated on the treatments or therapies that your child needs and how they can provide that care while doing everything they can to prevent transmission of COVID-19. They can also inform you of any changes to their operations that affect you and your child’s experience receiving care.”

Some office visits and follow-ups may be able to shift to telemedicine, but other treatments require your child’s physical presence.

Bringing Your Child to See the Doctor During COVID-19

Pediatricians are still available, prepared and ready to see patients for well-child visits, vaccines and more. With their understanding of the coronavirus and infection control, pediatric specialists and health care teams have revised their policies and office procedures to help ensure patients, parents and staff are protected. These changes help keep patients and staff safe from the spread of COVID-19.

It’s OK to ask your child’s doctor about what specific steps they are taking to ensure kids’ safety when they come in for treatments. DeLone says, “Because parents are juggling multiple concerns, reaching out for concrete information on the specific infection control policy changes may provide reassurance for themselves and their children about the safety of leaving home to receive treatment.

“Johns Hopkins Medicine has really come together to implement concrete changes to keep our patients and families safe, with things like universal masking and face shield policies. Parents appreciate the changes, and are glad that their kids’ safety is being protected.”

Immunocompromised Kids Might Feel More Vulnerable

“With so many things closed, some kids wonder why they still have to come to the hospital for care,” she says.

“Parents can answer that, telling the child, ‘Your treatment is really important. We’re asking you to stay home and participate in home-based activities to keep you safe, but your chemo can’t wait, and we need to keep your body healthy with this medicine.’

“Older children and teens might be aware of the fact that their bodies could have a harder time fighting the virus. Parents can reassure them that hospitals are aware of patients’ vulnerabilities, and are prepared and providing defined spaces for families.”

Parents can explain to children that they can do their part to keep themselves safer by wearing masks. Children should understand that while it is safe to be close to their household members and to health care practitioners who are wearing protective gear, it’s important to stay at least 6 feet away from other people.

COVID-19: Creating a New Routine

Routines are important to children of all ages, and these days, most are upended. The center of most kids’ worlds — going to school every day — is on hold.

Kids living with cancer or other chronic illness already feel left out by their condition and its treatment. Without school, DeLone says, “Children are dealing with treatment-related stressors and fewer opportunities to escape treatment isolation and participate in fun, social activities.

“Younger kids thrive on routine — it’s a safety net for them. We can try to appease them with words of reassurance, but when routines change, kids feel more vulnerable.”

Creating new routines can help children — and the whole family — adapt to life during COVID-19. For example, parents can encourage regular bedtimes, mealtimes, exercise breaks, projects and other activities that give the day some structure. Older children can feel more in control of their lives when they’re brought into the discussion and have input in family decisions.

How Parents Can Provide Support

“You can remind kids that the choices they’re making through physical distancing, such as seeing their friends virtually and playing games online, is helping them manage their health condition and helping them stay healthy. Talk to your kids more about what they can do than what they cannot do,” says DeLone.

She stresses the importance of giving children opportunities to talk about their concerns and providing honest, accurate information.

“Allow your child an open space to ask questions. Provide an open-ended prompt such as ‘So much is different right now. What changes have been hard for you?’ Allow them to feel varied emotions. Assure them that you’re working together as a family to keep each other and the community safe.

“Help them understand how the choices they are making are positively affecting their health and the health of those they love.” 

Scientist carefully insets a pipette into a test tube.

Coronavirus (COVID-19)

What you need to know from Johns Hopkins Medicine.

Published June 30, 2020