Resource Links

Online Resources for Pediatric Patients

Conversation Starters – 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

 

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

*PPCC Creative Therapies Toolkit

*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.

 

Casey Cares Foundation

Center to Advance Palliative Care (CAPC)

Children’s Hospice International

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

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