Challenges of Caregiving For A Child With Chronic Kidney Disease

Reviewed by: HU Medical Review Board | Last reviewed: February 2023

If you are a parent or caregiver of a child with chronic kidney disease (CKD), you are well aware that it is a challenging situation. It can be difficult to see your child deal with chronic illness like CKD. This is completely normal, and you are not alone.1,2

CKD is when the kidneys no longer function the way they are supposed to. While kidney disease is rare in children, research shows that there has been a steady increase in kids diagnosed with CKD over the last 20 years. Unfortunately, there is no cure for CKD.2-4

But children with CKD can still live long, full lives by getting the appropriate treatment or a kidney transplant if necessary. If you are a caregiver to a child with CKD, there are steps you can take to make the journey a little easier.1,3,5

Take the necessary steps to accept your new reality

A CKD diagnosis can be scary, stressful, and a hard reality to swallow. But the sooner you accept the diagnosis as your new reality, the sooner you can put into practice steps to handle it. But this does not mean ignoring your emotions and feelings about the disease. Remember to lean on your support network and take it one day at a time.1,2,4,5

Get the emotional support you need

According to a 2021 study, depression and psychological burden skyrockets among caregivers of children with CKD, especially mothers. CKD affects not only the quality of life of the child living with the disease, but the family as well.2

Make sure you, your child, and the rest of your family have the support you need. Do not ignore what you are feeling. It is important to acknowledge and process difficult emotions.1,2,5

Support can come from loved ones, healthcare team members, and the community, including:1,2,5

  • Family
  • Friends
  • Mental health professionals
  • Social workers
  • Child life specialists
  • Religious leaders

Educate yourself and your child

When your child is diagnosed with CKD, it may seem like there are mountains of information to climb. Do your best to not get too overwhelmed. Try to learn a little bit each day.1,2

The more you understand the condition, the more support you can give your child. Share what you can with them. Make sure to explain it in a way that they will understand. If you need help with explaining CKD to them, ask a nurse or other healthcare professional for help.1

The more your child understands about CKD, the better. It allows them to feel more in control of the disease and their overall health.1

Ask questions

Your head will likely be spinning with all sorts of questions and worries about your child’s health and well-being. Do not hesitate to ask their doctor and other care team members questions about the diagnosis, treatment, and what you can expect moving forward. Encourage your child to ask their own questions as well.1,2

Keep a journal or notebook to log new findings and write down questions as they come up. You can then take this notebook to your child’s doctor’s appointments and refer to it when talking about treatment issues and next steps.1

Support them during hospital stays and treatment sessions

As much as you can, be with your child during their doctor’s appointments, treatments, and any hospitalizations. If you cannot be with them, make sure a relative or close family friend can be with them. Help reassure them that they are being taken care of and are not alone in this journey.1

Depending on your child’s age, consider bringing a favorite stuffed animal, blanket, book, or toy with you during hospital visits and treatment sessions. Having something familiar with them can help them feel more at ease during an uneasy time.1

Prioritize their diet and nutrition

With CKD, diet and nutrition are very important. Following a kidney-friendly diet can slow the loss of kidney function. Your child may need to limit the following foods to help lessen the strain on their kidneys:1,5

  • Protein – Eggs, meat, dairy, beans
  • Sodium – Processed foods, canned foods
  • Potassium – Bananas, potatoes, tomatoes
  • Phosphorus – Milk products, dark colas

Getting your child to stick with a special diet can be hard at first. Meet with a dietitian to discuss an appropriate meal plan. They can help you figure out what your child should be eating, which foods to avoid, and creative (and tasty) recipe ideas.5

Consider a tutor to keep your child current in school

Dialysis treatments and medical appointments may mean a lot of missed school. This can lead to delayed learning or learning issues. If your child is missing school, a tutor may be able to help prevent them from falling behind in their studies. Talk with the teachers and school administrators about what support they can provide.5

Your child may qualify to receive special education services through the Individualized Education Program. This is a written document that confirms a child has a disability and needs special assistance. Talk with the school counselor about having your child evaluated.5

Other tips for caregivers

CKD can take a toll on both you and your child. Here are a few other tips that may help you both stay as healthy as possible:1-5

  • Follow a routine. This can be very helpful, as there are so many unknowns with chronic illnesses. A daily routine can help you and your child know what to expect. It can also help them feel safe and secure.
  • Help them take back control. Having a chronic condition can make a child feel powerless. Encourage your child to take an active role in their care, like engaging with their health team and learning how to take their medicines. This helps empower them and enables them to take ownership over the things they can control.
  • Encourage sports and activity. Many children with CKD can still take part in sports and physical activities. Encourage your child to participate in these activities unless their doctor says otherwise. Staying active can help boost their confidence, self-esteem, and mood.
  • Take care of yourself. You cannot provide support to others if you are not getting the care you need. Take good care of yourself by eating well, getting enough sleep, and exercising regularly.

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