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Pediatric Starter Kit – Additional Resources

Download the Pediatric Starter Kit in various languages HERE.

RESOURCES FOR INDIVIDUALS

Videos

  • 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.

Blogs & Articles

Books

  • 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.
  • Scarlet Says Goodbye by Christine Thompson
    • Grief/activity book for children.

RESOURCES FOR ORGANIZATIONS AND COMMUNITIES

  • Palliative care: Conversations that matter©: materials from the National Institute of Nursing Research to assist health care providers with starting and continuing conversations about pediatric palliative care with their patients and patients’ families.
  • Palliative Care for Infants, Children and Adolescents: A Practical Handbook by Brian S. Carter, Marcia Levetown, and Sarah E. Friebert
    • Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume.

Printing

  • The Pediatric Starter Kit may be downloaded and printed, or copies can be ordered directly via our online marketplace.