A child life specialist helps minimize stress on kids and families in a healthcare environment through play, education, preparation. Because whether adjusting to life with diabetes or preparing to help a tiny body fight for survival against cancer, parenting a child with chronic illness requires strength, understanding, planning, and empathy. That’s why most hospitals have a child life specialists on hand: Long-term care requires a long-term plan.
According to Jill Koss, director of family support services at Cook Children’s Medical Center and President-elect of the Association of Child Life Professionals, child life specialists work with families to empower children. They also assist with pain and stress management, teach coping mechanisms, and help educate families about symptoms, side effects, and surgery.
A difficult childhood diagnosis means a long-term commitment to helping a child cope and manage their illness. But the work of child life specialists can offer guidance on how parents can help children with chronic illness.
Make the Hospital Feel like Home
For many children with chronic illness, the hospital ends up becoming a second home. Parents can ease the transition from home to the hospital simply by improving the aesthetics.
“Bring things from home and decorate their rooms,” says Koss. “Bring blankets, stuffed animals, things they’re familiar with, so you create in the hospital some feelings of normalcy and some pieces of home.”
Koss also stresses that having parents and siblings at the hospital goes a long way in helping a child adjust for the long haul.
Be Prepared to Learn All About a Child’s Illness and Treatments
Chronic illness is confusing to parents, but for kids, it can be downright stupefying. Adults know that medicine’s designed to help them. But for a child, the concept of something that causes pain or discomfort — needle pokes, surgery, a medication that makes their hair fall out, being isolated from their friends and loved ones — being helpful is a lot to process
To help, parents need to learn as much as they can, then relay the information in a way the child understands.
“You can’t cope with something you don’t understand, and you can’t learn when nobody bothers to explain it in words you can process,” says Koss.
She recommends being honest with children to illustrate their situation and says that using toys, dolls, pictures, and models often work. She also emphasizes that children’s understanding of their situation will change as time goes on and that parents should be prepared to convey the same information in different ways at different ages.
Parents are also encouraged to sit down with physicians and specialists to ensure they’re learning everything they need to. Most practitioners will use teach-back methods — when the doctor explains something, then the parent explains it back in layman terms — to make sure they understand. That helps parents really grasp complex medical information at a time when they’re likely extremely overwhelmed.
“Most parents with a newly diagnosed child, they are drinking from a firehose (of information), and it doesn’t stop until you start to finally feel like you can manage what’s happening,” says Koss. “It takes time to understand after a life-changing diagnosis.”
Stick to Schedules and Maintain Discipline
Initially, managing chronic illness is chaotic. But Koss says there’s value in keeping to schedules as much as possible, even during hospitalization.
“If they’re used to having certain things happen at certain times, work with the clinical staff and say ‘this is when they eat, this is when they’re doing this activity,” she says. That includes keeping up with school work (Koss points out that most hospitals have school services available).
Kids strive in a structured environment, even when they’re sick. And structure includes maintaining discipline.
“A lot of parents say ‘I can’t discipline my child, they’re sick now.’ You still need to discipline. If they’re not allowed to kick and fight and swear before they’re sick, they shouldn’t be allowed to after they get sick,” Koss says. “You’re still raising this kid to be a 25, 30, 35-year-old. They may have a life-threatening illness, but your intent is still creating what you want your child to be like as an adult.”
Manage Personal Parental Stress
Everyday stress can be tough to manage on its own. Throw in a child with chronic illness, and suddenly bills, work, family needs, and everything else become amplified. And stress is transferable, which means a parent should be mindful of their reactions around a child who stressed by a frightening, often dire situation.”
“Younger kids will learn how seriously ill they are by the look on parents’ face, or how they’re acting. If they’ve got a child who is extremely fearful or shy, a fearful parent will drive that child further into being an introvert or withdrawn. If a parent’s doing it, a child will do it,” says Koss.
That’s not to say a parent shouldn’t be honest about how they feel, but a child who’s fighting a disease will look to their parent for support. Which is where going to support groups, talking to other parents, or working with the specialist becomes invaluable.
Keep Things as Normal as Possible
No child wants to be defined by their disease. No matter how intense treatments get or how terrifying things become, a kid still needs to be a kid. And it’s on parents to make sure they’re allowing the new normal being dictated by an illness to still be a normal full of love, support, and fun.
“Parents should also try to set up their child with chronic illness to participate in as many normal activities as possible. If they have specific medical requirements for care, there are organizations that will support those kids, such as special needs summer camps, day camps, and adaptive sports programs,” says Koss. ” As well, allowing them to be connected with school friends, peers, (and others) is important. Try to prevent them from becoming socially isolated, as that impacts the important developmental milestone of peer relationships.”