Online Resources for Pediatric Patients
Conversation Starters – discussions with families are particularly difficult when a child in involved. These resources can be helpful:
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.
*PPCC Care Plan Book – an handy resource for families to organize medical information
*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.