Video/Podcast

NEW! Firefly Chat - A Day in the Life of a Caregiver

During COVID 19 and beyond, what is it really like to care for a medically complex child in your home? Learn directly from parents living the experience how to best support and help families in this unique situation. (57:00)

PPCC: Who We Are and How We Can Help

This video provides an overview of the Pediatric Palliative Care Coalition (PPCC) of PA and features Executive Director, Betsy Hawley, along with a parent who has benefited from PPCC offerings. (1:17)

Courageous Parents Network

Select from a list of topics from Courageous Parents Network presentations, In the Zoom Room.

Courageous Parents Network Videos

Click HEREWhat does a good day look like?Click HEREWhat Siblings WantClick HEREThe Empowered Parent: Considering a TrachClick HEREShould we try again? Family Planning After a Genetic Diagnosis

Courageous Parents Network Videos

New! The New York Times - Dying in Your Mother's Arms

A palliative care doctor on finding a "good death" for children in the worst situations. By John Beder (22:20)

The Golden Sweater - A story of grief, strength, and love

A palliative care doctor on finding a "good death" for children in the worst situations. By John Beder (22:20)

PPCC: Pain and Symptom Management

In this in-depth video, Carol May of Children’s Hospital of Pittsburgh of UPMC, presents and discusses the latest techniques to manage and control pain and symptoms in children with chronic and life-threatening illnesses. (1:30:33)

Helping families answer the question: How many children do you have?

PPCC is in partnership with Courageous Parents Network. We encourage you to visit their website and voluminous video library.

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Reframing Hope: Pediatric Palliative Care

When Maria Kefalas discovered that her 2-year-old daughter, Calliope, had leukodystrophy, there were not many options. Her healthy baby was suddenly suffering, and she learned the disease was fatal. There was only a small clinic of two doctors, and little information or research on the disease. Produced by the Calliope Joy Foundation. (6:07)

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Portraits of Life Love Legacy Through Pediatric Palliative Care

In this film, families share stories of unthinkable journeys — caring for their own seriously ill or dying children. With open hearts, seven families discuss their close partnerships with the pediatric palliative care team to find love, joy, and purpose through the lives of these special children. (5:38

On Being Present, Not Perfect

Elaine C. Meyer, Ph.D., R.N. discusses the difficult conversations that often matter most in healthcare including conveying serious diagnoses and disclosing medical errors, to ethical quandaries surrounding end-of-life care. Dr. Meyer is an Associate Professor of Psychology and Director of the Institute for Professionalism & Ethical Practice – Children’s Hospital Boston and Harvard Medical School. (19:29)

NIH Makes Palliative Care More Attainable for Pediatric Patients and Their Families

A campaign by the National Institute of Nursing Research (NINR) aims to increase the use of palliative care for children with serious illness. Presented by Dr. Patricia A. Grady, NINR director. (5:09)

What is pediatric palliative care, Really?

PPCC is in partnership with Courageous Parents Network. We encourage you to visit their website and voluminous video library. (4:02)

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Podcast: When Children Need Palliative Care

Greater Illinois Pediatric Palliative Care Coalition brings this podcast to those looking for information about pediatric palliative care. (19:26)

PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.

The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization.  Donations are tax-deductible according to the IRS’s rules and regulations.  The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.

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