CYSHCNet conducts research to help children and youth with special health care needs (CYSHCN), their families, and health systems thrive.

More than one in five children in the U.S. have special health care needs. The Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) defines CYSHCN as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Too many families of CYSHCN report that their children do not receive care in a well-functioning system.

CYSHCNet is funded by HRSA/MCHB. CYSHCNet’s research is guided by the MCHB Blueprint for Change and our National Research Agenda. We collaborate with people with lived experience and partners across more than a dozen sites to research the issues that matter most to CYSHCN and their families.

Advancing Research for CYSHCN

Our research network is focused on improving the well-being and healthcare experiences of CYSHCN. Through a variety of interdisciplinary projects and collaboration across multiple sites, we are examining key factors that impact family well-being, quality of life, and family engagement.

Our work involves crowdsourcing, qualitative research, scoping reviews, and randomized controlled trials to develop more effective healthcare tools and interventions. We focus on identifying gaps, designing actionable solutions, influencing policy development and decisions, enhancing healthcare systems, and improving family engagement to better support CYSHCN and their families.