The process of capacity-building for pediatric subspecialty providers to address the needs of adolescents and young adults with chronic illness

Abstract

Abstract Approximately 12% of adolescents in the USA live with a chronic health condition. Although youth with chronic illness visit healthcare providers more than healthy peers, pediatric subspecialty providers are less likely to address developmentally relevant concerns (e.g., reproductive health) with adolescents and young adults (AYA), particularly youth of color and/or youth in low-income communities. Despite the documented need for increased training, there remains a general lack of knowledge about pediatric subspecialty providers’ training needs related to building their capacity to provide developmentally appropriate care to their adolescent and young adult patients. The present study describes an overall process for capacity-building to address the needs of diverse AYA patients with chronic medical conditions, built upon data representing key stakeholders and staff from 14 specialty care departments collected via quantitative surveys and focus groups. We describe the development of trainings for pediatric subspecialty providers from a large, urban, pediatric tertiary care center to address the health and psychosocial-related concerns of AYA living with chronic illness. We highlight valuable lessons from the capacity-building process in terms of increasing the ability of providers in a major pediatric healthcare center to provide developmentally appropriate care for AYA living with chronic illness. Finally, based on the results of our study, we provide recommendations on how to employ such a process in similar pediatric hospital settings.