ChILD Family Education

Area of Science:

• Pediatric Pulmonology
• Health Education
• Patient Advocacy

Background:

• Families affected by children's interstitial lung disease (chILD) require accurate and accessible educational materials.
• Existing resources often lack the specific, understandable information needed by families managing chILD.
• A gap was identified in comprehensive, family-centered chILD education.

Purpose of the Study:

• To develop a comprehensive, family-centered educational resource for chILD.
• To create a resource that addresses the identified needs and preferences of families and clinicians.
• To improve the quality and usability of health information for chILD patients and their families.

Main Methods:

• A collaborative approach involving the chILD Foundation, chILD Research Cooperative, and UAB Pediatric Pulmonary Center.
• Content suggestions and existing materials were gathered from diverse families and clinicians.
• Iterative feedback and development based on family input regarding helpful/unhelpful information and educational preferences.
• Writing the resource at a seventh-grade reading level for maximum comprehension.

Main Results:

• The creation of "Get Up And Go With chILD!," a chILD-specific family education booklet.
• The resource is comprehensive, covering critical topics identified by both families and clinicians.
• The online version offers interactive elements, including links to support groups, videos, and downloadable tools.
• The booklet is available in both print and online formats.

Conclusions:

• An interdisciplinary, family-centered approach is crucial for effective health education.
• Collaborative development, though resource-intensive, yields superior health education materials.
• "Get Up And Go With chILD!" exemplifies a successful model for creating usable, high-quality patient education resources.