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Information & Resources

PPCC strives to provide comprehensive, up-to-date information on pediatric palliative care/hospice options, as well as support organizations and self-help groups in Pennsylvania and the country.

NEW! Annual Respite Community Forum & Resource Fair – Pittsburgh, PA: September 25, 2017 Are you a parent or family caregiver? Could you or someone you know use a break from caregiving? If so, come and learn about respite. Respite Forum and Fair 2017

Blog – Courageous Parents Network –  So, how many kids do you haveHelping families answer the question: How many children do you have?

Article – Pittsburgh Post Gazette – Pittsburgh doctor shares struggles and privilege of treating dying children – 8/2017

Article – NY Times – For Kids with Cancer, Focusing on Quality of Life – 2017

Article – Time.com – How Repealing Obamacare Would Harm Chronically Ill Children 2017

The Palliative Care Provider’s Guide to Understanding Health Care Payment The Center to Advance Palliative Care (CAPC) presents the Payment Primer: What to Know about Payment for Palliative Care Delivery. The Primer is a free CAPC resource available to any program interested in payment but not sure where to start. It provides a basic foundation in health care payment insurance structures and quality metrics and offers ways to identify opportunities for payment improvement.

Courageous Parents Network – We are pleased to share these excellent resources from our friends at Courageous Parents Network.

Top 5 Videos of 2016  #1 Jessica, on being Rachel’s Big Sister;  #2 Dr. Joanne Wolfe presents on Pediatric Palliative Care as a Social Issue;  #3 Two SMA Type 1 Families. Two Paths.  #4 When the time comes: The last hour of Talon’s life.  #5 I wish there had been more support and fewer decisions at the beginning.

Online Resource – Students Coping with Grief & Loss at College – Expert Advice on Recognizing Symptoms of Grief, Accepting Loss & Getting Help http://www.accreditedschoolsonline.org/resources/managing-grief

Kinship Care in Pennsylvania: Support for Families with Grandparents and Other Kin Raising Children – This 18-page booklet discusses the concepts of kinship care, issues, support groups, programs, and resources for organizations working with kinship care families. To download the publication: grandparent-kinship-booklet


ChiPPS E-Journal E-Journals are produced by ChiPPS (the Children’s Project on Palliative/Hospice Services), a program of the National Hospice and Palliative Care Organization (NHPCO). For a complete list: CHiPPS E-Journals

ChiPPS E-Journal #47: Care of Siblings and Grandparents