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

Abstract

It is estimated that over one million people are living with inflammatory bowel disease (IBD) in the United States and that 20-25% of those are children. Pediatric IBD presents with more severe and extensive disease when compared to adults. As with all pediatric chronic illnesses, the patient as well as their parents and siblings are impacted by this diagnosis. Parents often feel afraid, isolated, stressed, angry, guilty, and overwhelmed when their child is diagnosed. Often, there is lack of structured support systems within the healthcare system to meet the complex needs of these families and they are often looking for support outside of the medical setting. Utilization of trained parent mentors as a source of support to newly diagnosed families is one method of addressing these needs. With minimal additional resources, we describe the feasibility of the development and implementation of a volunteer, parent mentoring program that went from an IBD-patient focused program to one that rapidly expanded to a hospital-wide program involving more than 200 mentors matched to over 300 mentees within a 2-year period.