Talking to Children About Kidney Disease 

Having a chronic disease changes the lives of everyone in a family. When you are diagnosed with kidney disease, your children or grandchildren may come to you with many questions. Even the youngest kids can be aware of a change in the family, although they may not be able to verbalize their feelings.

Your first instinct may be to protect your child or grandchild by withholding information. Usually this idea isn't the best. Children may already sense something is going on in the family, sometimes because of overhearing bits of conversation or seeing the worried expressions on a parent’s or grandparent's face. Talking to your kids about your chronic kidney disease (CKD) can help them in several ways, including:

  • Feeling less alone
  • Learning to trust their own perceptions
  • Appreciating the fact that you're sharing this information with them
  • Being reassured that they are important to you

Difficult questions children ask about kidney disease

Sometimes it's hard to answer a child or teenager who asks a difficult question. Prepare yourself for questions such as:

  • Why are you sick?
  • Will I get sick too?
  • When will you be well again?
  • What is dialysis?
  • What is a kidney transplant?
  • Who will take care of me if you're too sick to do it?
  • Are you going to die?

Sometimes a child will have a question but not voice it. However, if your child does ask you a question outright, be as open as you can.

Explain why your kidneys are not functioning the way they should and reassure the child that you are getting the finest care possible. Explain dialysis and transplantation so they have a better understanding of your current or future treatment. Talk about other family members or friends who will be helping the family. Admit that you get worried sometimes too, but by supporting each other, you know your family can get through this tough time.

Death is a difficult topic to discuss, but you can reassure children by saying that you are getting the best care possible and don't think you are going to pass away tomorrow or anytime soon.

Also, tell them what you can and can't do. For instance, you might not be able to participate in the 5K run sponsored by your child’s school, but perhaps you can still bake treats to share at the event.

Talking to young children about kidney disease

Although it is a good idea to be clear when explaining kidney disease to kids, you should also take into account their age and how much information they can handle.

If you have a very young child in the family who is not able to fully comprehend your disease, it's important that you convey your love and concern with some extra attention. Giving extra hugs and comfort can go a long way toward making your young child or grandchild feel reassured. Maintaining their routine as much as possible will also help a child feel protected, as will being surrounded by familiar people and things.

A child who is 3-5 years old is in a stage of development where they may experience feelings of guilt. They may think that somehow your being sick is their fault. However, they aren't old enough to understand death or worry about you leaving. Answer their questions as clearly as you can without overwhelming them with too much information.

Sometimes kids in this age group will idolize the family member who is sick; other times, they will transfer their feelings to another adult, such as a teacher or family friend. Realize that these behaviors are normal and reflect the child's desire to cope with a complex situation.

Talking to school-aged children about kidney disease

Children who are between the ages of 6 and 9 are more likely to worry. Ease their mind by explaining your treatment and what is involved. Children this age can understand the basics of dialysis. Some children even go to the dialysis center with their parents or grandparents.

Children 9-12 years old have a better understanding of how the human body functions. They can grasp what kidney disease is and its possible long-term effects. Help them understand what you are doing to slow the progression of CKD; or if you have end stage renal disease (ESRD), that you need dialysis to replace lost kidney function.

Talking to teenagers about kidney disease

Teenagers are coping with double the emotions: they’re trying to learn how to transition into adulthood, and at the same time they are coping with a loved one's illness. The stress a teen feels may be displayed as acting out, trouble sleeping, sullenness and mood swings. They may even express their feelings as anger, when in fact they are experiencing sorrow and fear.

Because they have more experience than younger children, teens should be talked to on a more adult level. A teenager may be able to handle more information and ask you more questions about your condition. In order to answer a teen's inquiries, offer to explore the education articles on DaVita.com together, as well as other trustworthy resources such as the National Kidney Foundation or the Centers for Disease Control and Prevention (CDC).

When teenagers know more of what you're going through, they may be more inclined to help around the house or take on more chores. A mature discussion about kidney disease may help them feel less overwhelmed so that they can still concentrate on schoolwork, after-school activities and a normal teenage social life.

Summary

Rather than hiding your health condition from your kids, have a conversation with them about kidney disease. Explain as much about CKD and its treatments as they can understand based on their age. Give them a chance to ask questions, reassure them that you are getting good treatment and keep them informed about any changes along the way. By starting a conversation and answering their questions, you and your children can feel more at ease.

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