For Caregivers of a Child with Serious Illness – Additional Resources



  • Stories from a home for terminally ill children
    • To honor and celebrate young lives cut short, Kathy Hull founded the first freestanding pediatric palliative care facility in the United States, the George Mark Children’s House. Its mission: to give terminally ill children and their families a peaceful place to say goodbye. She shares stories brimming with wisdom, joy, imagination and heartbreaking loss.
  • Cameron’s Arc: Creating a Full Life
    • Cameron’s Arc is designed to train health care professionals, including primary care pediatricians, on how to provide compassionate, family-centered care, including palliative care, to seriously ill children and their family. Now available through the AAP Pediatric Care Online platform to the public (free of charge), this collection of 5 videos build capacity among pediatricians to provide compassionate, family-centered, palliative care to families of seriously ill children. Many of the strategies outlined in these videos also apply to children with disabilities and medical complexity.

Blogs & Articles


  • On Death and Dying by Elisabeth Kübler-Ross
    • Just re-released with a new foreword by Dr. Ira Byock; the classic book written following EKR’s hundreds of interviews with dying patients.
  • On Children and Death by Elisabeth Kübler-Ross
    • Based on a decade of working with dying children, this compassionate book offers the families of dead and dying children the help — and hope — they need to survive. In warm, simple language, Dr. Kübler-Ross speaks directly to the fears, doubts, anger, confusion, and anguish of parents confronting the terminal illness or sudden death of a child.
  • The Tunnel and the Light by Elisabeth Kübler-Ross
    • It contains the “Dougy Letter,” which is written to an eight-year-old as a way to explain all of life, which includes death.
  • The Private Worlds of Dying Children by Myra Bluebond-Langner
    • “The death of a child,” writes Myra Bluebond-Langner, “poignantly underlines the impact of social and cultural factors on the way that we die and the way that we permit others to die.” A moving drama constructed from her observations of leukemic children, aged three to nine.
  • The End of Life at the Beginning of Life: Working with Dying Children and their Families by Nancy Cincotta (clinical director of Camp Sunshine and a LICSW) — a chapter from the book, “Living with Dying.”
    • While the chapter and the book in which it is published are written for a clinical audience (doctors, social workers, chaplains, nurses etc.), parents may find this compassionate, sensitive, and objective discussion of how to support parents and dying children to be helpful. It provides a bird’s-eye view of family dynamics, parent-child dynamics, and provider-parent dynamics. The chapter is especially appropriate for parents of older children who are sick.
  • Everyone Dies (and Yes, It is Normal) By Marianne Matzo, PhD, FAAN and Darlene Domanik
    • Everyone Dies (and Yes, It is Normal) is a story about a young boy named Jax who finds something special on the beach where he and his grandpa Pops are enjoying a wonderful day. Pops helps Jax understand that death is a normal part of life. This book provides an age appropriate, non-scary, comfortable way to introduce the important topic of mortality to a preschool child. Its simple explanation will last a lifetime.
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