Lighting the way for children with medical complexity
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)
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)
Select from a list of topics from Courageous Parents Network presentations, In the Zoom Room.
A palliative care doctor on finding a "good death" for children in the worst situations. By John Beder (22:20)
A palliative care doctor on finding a "good death" for children in the worst situations. By John Beder (22:20)
PPCC is in partnership with Courageous Parents Network. We encourage you to visit their website and voluminous video library.
LEARN MOREWhen 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)
LEARN MOREIn 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
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)
PPCC is in partnership with Courageous Parents Network. We encourage you to visit their website and voluminous video library. (4:02)
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.
