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What I Wish You Knew

What I Wish You Knew…Sharing Perspective from the Bedside

Patients and families from our six Family Advisory Councils were asked a basic question: What is important to you during your health care experience? What do you wish the health care team knew? Each council created a wish list, all with many of the same common themes: respect, communication and partnership. These wishes embody the building blocks of patient- and family-centered care.

We've Been There, Too

In a major initiative, called “We’ve Been There, Too,” Pediatric Family Advisory Council members launched a series of online audio segments to share their hospital experience with other parents. Topics include adjusting to a chronic medical condition, coping with long-term hospitalization, and chronicling a child’s care.

Our Journey in Special Education
At every meeting we were outnumbered—we knew we needed to be strong advocates, but how?

The Things I Wish Someone Had Told Me
A mother reflects on her son’s hospital experience and death.

Chronicling Your Child's CareKeeping a medical journal can help you gain some control over an out-of-control situation.

A Teaching Tool We Treasure

Our New Normal
We weren’t prepared for a life-threatening diagnosis just 24 hours after our son was born.

What Our Son Taught Us
Your journey will be uniquely yours—take one day at a time and embrace the moments.

When Your Child Needs Lifelong Medical Care
Treat the chronically ill child like any other child—love him or her unconditionally and set goals.

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