Coping with Chronic Illness: Children & Parents

A chronic or long-lasting illness like childhood cancer or type 1 diabetes can be difficult for anyone to deal with. But for a young child diagnosed with a chronic health condition, there are challenges for both child and parent. Parenting a child with chronic illness isn’t always easy, but at CHOC, we have developed an approach to support the whole family.

While their illnesses are sure to create challenges for them and their families, most children are likely to lead full and productive lives. To help them cope, there are a number of coping strategies families can use for children with chronic illness.

Living with a Chronic Illness: Help Your Child Understand

To help your child cope and manage stress, encourage him or her to express their feelings. Sadness, fear, frustration and rage are common and shouldn’t be bottled up. Provide age-appropriate information about upcoming doctor appointments or procedures, and have your child visit with other children with similar conditions or treatments.

Chronic Illness & Mental Health: Provide Options and Independence

After a child is diagnosed with a chronic illness, he or she may face many hospital visits, tests, procedures and other obligations. This can make children feel as if life is no longer in their hands and that they no longer have a say in anything. You can help your child avoid this overwhelming experience by giving them as many options as possible. Even if it’s as simple as what he gets to have for dinner or who gets to visit her in the hospital, these choices will allow your child to feel empowered during a difficult time.

As children mature, it’s also important to promote independence by helping them take care of themselves, such as testing their own blood sugar levels or managing insulin injections if they have diabetes. Encourage them to be a helper when a nurse checks their arm band in the hospital, takes their temperature or asks them to extend their arm to check blood pressure.

Manage Chronic Illness in School

To make sure your child succeeds in school, provide the staff and teachers with a written plan outlining daily care needs, as well as an emergency plan. The document should contain a brief medical history, a list of medications or procedures required during the school day and a list of dietary needs or other special precautions. This document can help determine the school’s role in developing an individual education plan to serve your child.

Chronic Illness Support: Keep Friends Close

Also critical in helping a child feel normal during a chronic illness is maintaining social ties with friends and family. If possible, this may involve following normal routines even with the chronic illness, or having friends visit in the hospital. Some patients use FaceTime or Skype to communicate with friends or classmates.

Many children are frightened and confused when a friend has a chronic illness. As a parent, you can help keep your child’s friends strong by reassuring them (and their parents) that they are getting the treatment they need to get better.

Chronic Illness & Depression: Look for the Signs

If a child has a chronic illness, it’s not uncommon for them to develop a mood disorder, such as clinical depression. Some of the signs and symptoms to look for include:

• A lingering bad mood
• Anger
• Withdrawal from friends and family
• Talk of suicide

Signs of depression are more typical among young girls than boys, and they tend to occur more commonly if the illness affects the child’s appearance or activity level. If you notice any of the signs of depression in your child, make sure to talk with your child’s health care provider or one of our psychologists. A variety of treatment options are available.

Follow a Spiritual Path: Community Support

Although religion and other forms of spirituality are usually seen as more important to adults with a chronic illness, they can be helpful for children, too. Thinking about the spiritual side of illness, for instance, may help a child rationalize what is happening to him or her.

When dealing with a chronic illness, it’s also not uncommon for issues of death and dying to come up. For example, a child may feel he or she is being punished for some past misbehavior, or he or she may wonder why a higher power would allow this to happen. In these situations, reassure your child as best you can. You can also invite spiritual leaders into your support circle when appropriate to help address your child’s concerns. Sometimes, children wonder why they have an illness. We encourage patients to think about how they can help themselves feel better, rather than focusing on why.

Coping Resources for Chronic Illness at CHOC

Chronic illness can be extremely difficult for both parents and children to handle on their own. Don’t be afraid to ask your health care provider about mental health counseling for you, your child and any other family members affected by the illness if you feel it is needed.

At CHOC, our psychologists are adept at helping children and families deal with a chronic illness in a number of ways:

• We help your child adjust to being in the hospital, getting treatment and getting examined.
• We provide parenting education about parenting a child with a chronic illness.
• We use behavioral plans, also known as sticker charts, to earn rewards for taking medicine, walking and eating meals.
• We teach children distraction strategies when they say they have worry, fear or pain. This is particularly useful when a child is prepping for a procedure.
• We are also a liaison for patients and families whenever they need to support to communicate their needs to their care team.

Reviewed by Nadia Torres-Eaton, MD, Aug. 31, 2015.

Growing up is tough enough for teens and young adults, but living with a chronic disease adds even more complications. In this CHOC Radio podcast, CHOC patients Cody, 23; Megan, 17; and Cole, 14 discuss aspects of life with a chronic illness.