Self-Advocacy Toolkit

From Pediatric Palliative Care Coalition, original found here

"Be a Champion for Self-Advocacy

A Guide for Parents, Caregivers, Children and Adolescents

A child or adolescent with medical complexity and their families often face challenges where self-advocacy becomes important. Young people may not be able to advocate for themselves if they do not understand their illness or know how to express their wants and needs.

While it can be difficult to explain a diagnosis to a child, it is essential to do so in developmentally and age-appropriate ways in order for the child to process the information and begin to develop coping skills.

This toolkit is designed to help parents, caregivers, children, adolescents and teens on the advocacy journey.

Section One: Children’s Stages of Development and Effects of Illness

Section Two: Advocacy Guide for Caregivers

Section Three: Self-Advocacy Guide for Adolescent Patients

Section Four: How to Build an Advocacy Team

Section Five: Additional Resources for Information"

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