Inflammatory Bowel Disease IBD 1.1

The Emily Center at Phoenix Children’s Hospital has developed "Our Journey with IBD," a resource aimed at assisting families of children diagnosed with Inflammatory Bowel Disease (IBD) in navigating their care at home. This initiative addresses the challenges parents face when interacting with medical professionals who may use complex medical terminology, often leading to feelings of confusion and overwhelm.

In a clinical environment, it is not uncommon for healthcare providers to assume that their explanations are clear. However, without verifying understanding, parents may leave with lingering uncertainties. The ability to teach back information in one’s own words is crucial for ensuring comprehension and fostering confidence in a child’s care.

The "Our Journey with IBD" app is purposefully designed to:

• Enhance dialogue between families and their healthcare team.
• Assist parents in determining necessary knowledge for safe at-home care.
• Provide a secure platform for parents to express uncertainties and ask pertinent questions.
• Guide families on key concepts they need to teach back or demonstrate to healthcare professionals, allowing for clarification and correction of misunderstandings.
• Empower families with the confidence to manage their child’s health at home, recognize warning signs, and understand appropriate responses.

About The Emily Center at Phoenix Children’s Hospital: Founded in 1990 by Emily Anderson's parents after her battle with leukemia, The Emily Center aims to ensure that families of children facing medical challenges have access to accurate, understandable pediatric health information without any cost. More information is available at www.theemilycenter.org and on Twitter @emilycenter.

The development of the "Our Journey with IBD" mobile app was made possible through a grant from Cox.