Working together for medically fragile children. 
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Resource Links
Resource Links
Conversation starters
Discussions with families are particularly difficult when a child in involved. These resources can be helpful:
- Conversations Matter Pediatric Starter Kit
- Palliative Care for Children – Conversations Matter: Support for the Whole Family When Your Child is Living with a Serious Illness
- The Conversation Project
- NINR Online Toolkit: Information and resources to encourage conversations about pediatric palliative care
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: 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 E-Journal: Produced by the National Hospice and Palliative Care Organization (NHPCO)
- NHPCO Pediatric Facts and Figures
- NHPCO Concurrent Care Toolkit
- 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.
Organizations
- Casey Cares Foundation
- Center to Advance Palliative Care (CAPC)
- Hope Grows – Think Caregiver program
- Hospice and Pallitive Nurses Association (HPNA)
- Institute for Patient and Family Centered Care
- Jamie’s Dream Team
- Make-A-Wish
- Mommies of Miracles
- Patient Quality of Life Coalition (PQLC)
- St. Jude’s Children’s Research Hospital
- What Do You Do, Dear? Blog
