Connecting Families: A Pediatric IBD Center's Development and Implementation of a Volunteer Parent Mentor Program

Area of Science:

• Pediatric Gastroenterology
• Chronic Illness Support
• Patient Advocacy

Background:

• Inflammatory Bowel Disease (IBD) affects over one million people in the US, with 20-25% being children.
• Pediatric IBD often presents with more severe and extensive disease compared to adult cases.
• Families of children with chronic illnesses like IBD experience significant emotional distress and a lack of structured healthcare support.

Purpose of the Study:

• To describe the feasibility and implementation of a volunteer parent mentoring program for pediatric IBD.
• To address the unmet support needs of families navigating a new pediatric IBD diagnosis.
• To evaluate the expansion of a patient-focused program to a hospital-wide initiative.

Main Methods:

• Development and implementation of a volunteer parent mentoring program.
• Recruitment and training of parent mentors with lived experience in IBD.
• Matching trained mentors with newly diagnosed pediatric IBD patients and their families.
• Program expansion from an IBD-specific focus to a hospital-wide model.

Main Results:

• The volunteer parent mentoring program was successfully developed and implemented.
• The program rapidly expanded within two years, involving over 200 mentors.
• More than 300 pediatric IBD patients and their families were matched with mentors.
• The program demonstrated feasibility with minimal additional resources.

Conclusions:

• Trained parent mentors provide a valuable support system for families of children with IBD.
• Volunteer mentoring programs can be effectively implemented and scaled within healthcare settings.
• This model addresses critical psychosocial needs of families dealing with pediatric chronic illness.