Understanding the Lived Family Experience
After reviewing this Guide you will be able to identify the central themes in the lived experience of caring for a child with a serious medical condition as well as formulate strategies to support families as they accompany their child.
Can we help you:
- A Guide to Getting Started with Systems of Care
- Introducing NeuroJourney to Families
- When You and Your Child’s Clinicians Have Different Ideas or Styles: How To Find a Way Forward
- Framework for Sharing Decision-Making with Your Child’s Clinicians
- A Guide to Being Your Own Best Ally
- How to Find a Therapist
- Assessing and Responding to the Spiritual Needs of Seriously Ill Children and Their Caregivers
- 7 Things Your Patient Family Would Like You to Know
- 6 Things Primary Care Clinicians Can Do to Support Children with Complex Medical Needs
- Spirituality and Caregiving in Pediatric Illness
- Top Lists
- Supporting Families in Bereavement
- What is Anticipatory Grief?
- Travel Guide
- Anticipatory Symptom Management Plan
- Introducing Families to CPN
- Introducing Families to Palliative Care
- Supporting Families in Advance Care Planning
- Delivering the Diagnosis or Bad News
- Shared Decision-Making
- JJ - a Day in the Life
- The Pediatrician’s Role in Serious Illness
- Intro to Financial Planning & A Letter of Intent (template)
- Introduction to Pediatric Palliative Care
- Understanding Palliative Care and Hospice Care
- CPN FAQ Sheet
- In Case of an Emergency ... here is what others need to know about my child's care.
- Care Plan Book
- Navigating the Hospital
- Considering a Port for Your Child
- Considering the Clinical Trial Option
- Understanding Baseline
- Family Meeting: Being Prepared
- Communicating Effectively and Compassionately to Help Siblings Cope
- Strengthening Your Parenting Partnership
- Self Care: A Parent's Guide to Taking Care of Yourself (as well as Your Child)
- For Grandparents and Extended Family of Children with Serious Illness
- Managing Pain in Children with Complex Chronic Conditions
- Medical Orders
- Exploring Integrative Therapies
- Scoliosis and Spine / Spinal Surgery: Facts and Decision-Making
- What is Tube Feeding?
- Considering Tracheostomy
- Evaluating the Clinical Trial Option: A guide to CPN Resources
- Clinical Trial Unit: Questions to Consider
- Glossary: Understanding Clinical Trial Terms
- Guide to Informed Consent
- Planning Transition from Pediatric to Adult Providers for the Fully-Dependent Child
- Exploring Out-of-Home Placement
- Considerations for Guardianship & Medical Decision-Making
- End-of-Life Guide Part 1: Preparing
- End-of-Life Guide Part 2: What to Expect
- Understanding and Managing Nutritional Needs at End of Life
- Guide to Continuing Bonds for Bereaved Parents
- 5 Packaged Teaching Modules: Being a Good Parent, Supporting Siblings, Talking About the End of Life, Making Difficult Decisions, and Palliative Care
- Referral Script
- Making Critical Care Choices: A Guide
- Facing End of Life Bibliography
- Bereavement Bibliography
- Bereavement Bibliography
- Bereavement Websites and Camps
- Parenting the Surviving Siblings
- Guide for Writing as Healing
- Printable CPN Info Sheet
- Guide to CPN's Family Voices
- Guide to CPN's Clinician Voices