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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.


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 #52: Caring for Diverse Populations  Professionals and volunteers who work in pediatric palliative/hospice care often are presented with children and families whose religious, cultural, and ethnic backgrounds are different from their own. This issue seeks to provide at least a beginning in discussing these differences with families and children.

ChiPPS E-Journal #51: Offering Support in Crisis/Traumatic Situations This issue of E-Journal explores topics related to offering support in crisis or traumatic situations.

 


Online Resources for Pediatric Patients

Discussions with families are particularly difficult when a child in involved. These resources can be helpful:

*Vital Talk and Vital Talk app

*Conversations Matter Pediatric Starter Kit

Advance Directive planning for pediatric patients:

*Voicing My Choices: A Planning Guide for Adolescents & Young Adults helps young people living with a serious illness communicate their preferences to friends, family and caregivers

 

 

*My Wishes is a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill.

 

Additional information for pediatric patients and their caregivers:

*Pediatric eJournal – this free quarterly eJournal is produced by the NHPCO Pediatric Leadership Team. It is a fantastic go-to source for indepth coverage of timely topics.

*NHPCO Pediatric Facts and Figures

*NHPCO Concurrent Care Toolkit

*Care Plan Book – an handy resource for families to organize medical information

*Creative Therapies Toolkit (link to come)

*PPCC Concurrent Care Legislative Brief

*Pediatric Palliative Care Field Guide – a comprehensive catalog of resources, tools and training to promote Pediatric Palliative Care innovation, development and growth

*Courageous Parents Network has a tremendous library of videos and resources to help families navigate the many issues surrounding pediatric palliative and hospice care.

 

*Palliative Care for Children – Conversations Matter – Support for the Whole Family When Your Child is Living with a Serious Illness

*The Conversation Project or Conversation Starter – The Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child offers advice and provides stories from parents and palliative care specialists.