• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
Alliance icon

A program of the National Alliance for Care at Home

Visit the Alliance
CaringInfo logo

CaringInfo

Resources to help people make decisions about end-of-life care and services before a crisis

MenuMenu
  • Home
  • How to Prepare, Plan, and Be Present
        • I Need Help Now
        • Feeling overwhelmed? We have resources to help you sort things out.

        • Planning Overview
        • Topics
          • Advance Directives
          • Caregiving
          • Communicating
          • Financial Matters
          • Finding Care Outside of the Home
          • Grief and Loss
          • Rights
  • Types of Care
    • Types of Care Overview
    • Curative Care
    • Palliative Care
    • Hospice Care
    • Comfort Care
    • Bereavement Care
    • Difference between Palliative and Hospice Care
  • Insights
  • Resources
  • English
    • Español

How to Prepare, Plan, and Be Present \ Caregiving \ Caring for Children with Serious Illness

Caring for Children with Serious Illness

Available in: Español

If your child has a serious or life-limiting illness, you want to do everything you can to ease your child’s pain and help them live as fully and comfortably as possible. This can be an incredible strain on parents; lack of sleep, money worries, work pressures, the needs of other children, your spouse and relatives—everything influences your ability to cope.

It is important to learn as much as you can about your child’s illness. Do not be afraid to ask lots of questions of the doctors, nurses and therapists that might be providing care for your sick child. If you are unsure about what they are telling you, it’s okay to ask them to explain it again in a different way. They want to make sure you understand everything that is happening.

Children’s National Medical Center in Washington, DC, is recognized as one of the leading hospitals in the country that provides care to young people. The Children’s National website offers information on a wide range of conditions and treatments that may help you learn more about a serious illness.

Depending on the severity of your child’s illness, pediatric palliative care or hospice care might be something for you to consider. Palliative care helps throughout a serious illness, and when a cure is no longer possible, hospice care can provide incredible support to you, your child and your family. Many hospices provide pediatric palliative care, so you should consider reaching out to them to see how they may support your child and family. You may be reluctant to call hospice because you feel it means you are giving up. But you really aren’t. You are getting support for your child and your family that will make everyone, especially your child, feel much better. Ask your doctor or social worker to call for you and make a referral if you would rather not make the call yourself.

Although many hospices will provide care for children with a life-limiting illness, your child’s doctor and the hospice medical director will evaluate the progression of your child’s illness and determine if the time is right for hospice. Your doctor and a hospice nurse will answer any questions you may have and tell you what to expect and what you can do to make your child more comfortable at this time.

Your health insurance may cover the same hospice services for a dependent child as it does for an adult. Talk with your health insurance representative. If you do not have health insurance, your child may be eligible for coverage via Medicaid’s Children’s Health Insurance Program (CHIP) which can work along with Medicaid if he or she is a citizen or a lawfully admitted immigrant, even if you are not. Eligibility for children is based on the child’s status, not the parents. Also, if someone else’s child lives with you, the child may be eligible even if you are not because your income and resources will not count for the child.

Always check with your local hospice about available services. Remember, it is a tradition of hospice to offer services based on need, rather than on the ability to pay.

Additional Resources on Caring for Children with Serious Illness

The Conversation Project has a guide on how to start talking with a child who is living with a serious illness about the health care that is right for them.

  • Back to top
  • Print this page

Primary Sidebar

Section Menu

Caregiving
  • What is Caregiving?
  • Preparing and Getting Organized
  • Caregiver Duties and Activities
  • Caring for a Veteran with Serious Illness
  • Caring for Children with Serious Illness
  • Taking the Time to Listen
  • Caregiving Resources

Footer

CaringInfo logo

A program of the National Alliance for Care at Home

About

CaringInfo, a program of the National Alliance for Care at Home, provides free resources to educate and empower patients and caregivers to make decisions about serious illness and end-of-life care and services. CaringInfo’s goal is that all people are making informed decisions about their care. Learn more about CaringInfo.

  • Donate
  • Contact CaringInfo
  • Licensing Opportunities

Find a Care Provider

Visit the Alliance to find a care provider in your area.

Start Searching

Alliance logo© 2025 National Alliance for Care at Home | Privacy

A Decrease font size. A Reset font size. A Increase font size.

We use cookies to ensure that we give you the best experience on our website. If you continue to use this site we will assume that you are happy with it.Accept and ClosePrivacy policy