C-TAC News

The Blog to Transform Advanced Care

Advancing Care through Innovation, Observation and Collaboration.

C-TAC Member Spotlight: The Pediatric Palliative Care Coalition

The Pediatric Palliative Care Coalition (PPCC) is a Pennsylvania based nonprofit organization consisting of clinicians, healthcare professionals, social workers, parents, and community members who are committed to improving access to quality pediatric palliative and hospice care for children and families.

Established in 2008, PPCC’s mission is to provide resources to families, volunteers and medical professionals caring for children with life-limiting illnesses. PPCC works closely with pediatric palliative care programs in the tertiary children’s hospitals across the state, as well as with hospices, home health care agencies and families caring for medically complex children. PPCC responds to the needs of it’s members by providing training and resources to clinicians and families, as well as by advocating for pediatric palliative and hospice care in the legislature and within the health care system.

PPCC delivers regional and statewide educational programming and is a collaborative partner in the nationally acclaimed Pediatric Palliative Care Webinar Series. Monthly virtual presentations by experts in the field provide easily accessible education for the entire interdisciplinary team.  The webinars are used as team training programs as well as for individual professional growth.  The 2022 series is available as an entire package or by individual webinar.  PPCC also offers quarterly Firefly Chats.  These informal virtual programs feature conversations between providers and families highlighting intersecting perspectives.

Along with education, PPCC provides tools and resources for both clinicians and families to use at bedside or in the home. All the PPCC Toolkits, including Creative Expressions, Caring Conversations, Sibling Support (new!) and the PPCC Care Plan Book are available on the PPCC website and are free of charge. One of the most exciting PPCC initiatives is the Lightning Bug app which provides families with a digital tool to help track, manage and communicate the important medical information of children with medically complex and chronic conditions. Families find this tool extremely helpful in navigating the overwhelming complexity inherent in the healthcare system.

Through extensive programming, resources and reach throughout Pennsylvania and nationally, PPCC makes a difference to all those caring for children with medical complexities. PPCC works to educate, advocate, and partner with professionals and the community to provide information and resources for families facing the challenge of caring for a child with medical complexity. The goal is ensure that every child and family has access to high quality pediatric palliative and hospice care from time of diagnosis, regardless of where they live.

C-TAC membership is an opportunity to spotlight children in the spectrum of those affected by serious illness.  While advocacy efforts are most often concentrated on the elder population at the end of life, it’s critical to ensure that children with life limiting illness and their families are not forgotten in legislative efforts.

Leave a Comment