Transitioning From “Sick Kid” to Community Health Worker: Building Better Bridges to Adult Care
The term “transition to adulthood” is used to describe the process that adolescents and young adults (AYAs) with special health care needs experience as they become adults. This process includes not only the often complex transfer of care from pediatric to adult health care systems, but also dynamic changes in social situations, education, employment, recreation, and more. The National Center for Health Care Transition Improvement (Got Transition) outlines 6 core elements for the safe and effective transition to adulthood and transfer of care from pediatric to adult health care systems.1 However, pediatric providers are often wary of transferring their patients to adult care, and adult providers feel unprepared to accept these patients into their practices, leaving patients and families feeling abandoned and confused.2–4
We present a model at Children’s Hospital of Philadelphia (CHOP) for embedding the patient perspective into a multidisciplinary team tasked with addressing transition to adulthood. We fully integrate a former patient at CHOP with personal experience with chronic illness and transition to adulthood as the youth community health worker (YCHW) into a team of physicians, a nurse practitioner, a nurse coordinator, and social workers. The YCHW is tasked with generalizing personal experiences with chronic illness to encourage goal-setting for AYA patients and viewing AYA patients, especially those with special health care needs, in a holistic way for providers. Our transition team coordinates care for patients with medically and socially complex backgrounds to transfer their medical care to adult providers safely while also addressing psychosocial needs such as insurance, post–high school planning, and medical decision-making support. The team also works to improve and support transition practices across the institution. The YCHW brings a patient voice to institutional resources (such as transition policies), educational tools for providers and patients, and hospital-wide psychoeducational events that are used to integrate peer mentors for youth and their families to address important topics for transition to adulthood.