Transitioning From Pediatric to Adult Healthcare: A Caregiver’s Perspective on what Youth and Families Need

Abstract

Among the US population of children and adolescents under 18, around one-fifth to one-fourth are children and youth with special healthcare needs (CYSHCN). Every adolescent and young adult should be equipped with resources to successfully navigate a shift from pediatric to adult medical care, especially CYSHCN; however, currently there is no consistently funded, accessible, or implemented universal program to guide the pediatric patient or their family through healthcare transition (HCT). In this article, the perspective of a mother and caregiver for a CYSHCN is presented, detailing the shortcomings of the US healthcare system in ensuring effective HCT. An emphasis is placed on the system’s expectations of pediatric patients’ abilities without a universal program to develop those abilities. Specific recommendations are provided targeted to hospital systems, educational institutions, and government agencies to inspire resource development, program creation, and policy change to promote a healthier transition to adult care for our youth.