Caring for a Chronically Ill Child: What Should You Know?

ill child

It’s perhaps a parent’s worst nightmare: hearing the news that your child is chronically ill. No matter how severe the case may be, whether severe or treatable, physical or mental, grieving over this diagnosis is valid. Being a parent and caretaker to a chronically ill child is no walk in the park; you deserve all the help and support in the world. Here are some tips to help you navigate this journey easier.

Build a strong rapport with their primary care provider

You most likely already have a pediatric healthcare clinic you already go to. But if not, then make sure to ask your child’s current doctor to recommend a reliable pediatrician that can help you in this quest to care for your child. Make sure it’s someone you can partner with in this journey and who is devoted to ensuring that your child receives the care they need.

At the same time, you also need to establish a strong rapport with your child’s doctor while understanding good boundaries. This is so that you can always have someone to run to when you have important medical questions.

Understand what you can about their condition

Another benefit of having a healthy rapport with your child’s doctor is that you can ask them anything about your kid’s condition and provide you with resources to help you understand further. Uncertainty and not knowing are some of the biggest triggers for anxiety. Having a significant level of knowledge and understanding about the disease might help you navigate better.

Lack of awareness about how the condition operates can be particularly risky for conditions with symptoms not always present, like epilepsy. A five-year research study funded by the National Institutes of Health found that some parents of children with epilepsy fail to administer the necessary medications for their kids. They only provide them when the children have to visit the doctor the next day.

This can be dangerous because the doctor needs to measure the child’s drug levels every visit. If the parents are not consistent with the medications, it might not provide a clear reading of the child’s true condition. It might cause the doctors to provide clinical decisions based on false drug levels. To avoid mistakes like this, make sure to do proper research and ask their doctors all your questions so as not to fall for misinformation.

Explain to your child how their long-term condition will affect them

Mom with her tween daughter

There are plenty of ways to be honest with your child about the reality of the situation without scaring them. Let them know that while they do have this condition, it doesn’t define who they are. Assure them that they will receive the care that they need and that even if hospitals, medicine, and tests may be scary, these processes will help them feel better.

As you explain the illness or disability to them, tell them that patiently and gently answer their questions without sugarcoating anything. Prepare them for the possible discomforts or even pain that might come with the treatments. Hospitals have protocols on how to tell children about their condition. You can ask your child’s doctor about the best way to disclose to the child about their diagnosis.

Teach your child healthy ways to cope with negative emotions

With the news of the diagnosis may come a lot of tears and pain. Here is a step-by-step guide to helping them navigate this new reality:

  • Honor and validate. Instead of telling them to stop crying, tell them their grief, worries, and other negative emotions are valid and understandable.
  • Provide healthy ways to cope with pain, like art therapy or talking it out. You can also ask your primary care provider if they think counseling would be helpful.
  • Lead by example. It may be hard, but your child will take cues from you. Be strong on their behalf while still honoring your feelings, too.

Consider joining a support group

One of the best things you can do for yourself and your child is to build a trustworthy community that can help you navigate this new chapter. You and your child are not alone, and plenty of families might be going through similar things. Join a support group for the specific illness, not just for your child but also for you. It takes a village to raise a child, even if said child has a chronic condition.

This is one of the hardest things any parent can go through, but know that you are not alone. Help is always available.

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