Systems and Standards Journal Articles
March 1, 2022

A National Health Systems Research Agenda for Children and Youth With Special Health Care Needs: Supplement to Academic Pediatrics

By: Christopher Stille, Jay Berry, Ryan Coller

A national group of researchers and family leaders aim to improve the system of care for children and youth with special health care needs (CYSHCN) through the establishment of a family-centered national research agenda. This supplement to Academic Pediatrics provides a blueprint of research priorities that address health outcomes and the well-being of CYSHCN. The research topics were identified through feedback from a diverse group of stakeholders, including youth and family caregivers. In addition to implications for researchers, the agenda and research gaps reported in the supplement are intended to inform policy and funding priorities. Click the links below to read the articles:

Overview of the National Research Agenda on Health Systems for Children and Youth With Special Health Care Needs

Improving Health Care Transitions for Children and Youth With Special Health Care Needs

Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home

Research on Family Health and Children and Youth With Special Health Care Needs

Assessing and Addressing Social Determinants of Health Among Children and Youth With Special Health Care Needs

Child Health, Vulnerability, and Complexity: Use of Telehealth to Enhance Care for Children and Youth With Special Health Care Needs

Research Agenda for Implementation of Principles of Care for Children and Youth With Special Health Care Needs

Moving From Spending to Investment: A Research Agenda for Improving Health Care Financing for Children and Youth With Special Health Care Needs

Authors from select articles describe their  findings and reflect on the implications of their recommendations. View the webinars to learn more:

A Family-Centered Research Agenda for Improving Health Care Transitions for Children with Special Health Care Needs

A Family-Centered Research Agenda for Supporting Caregivers of Children with Special Health Care Needs

This work was led by the Children and Youth with Special Health Care Needs Research Network (CYSHCNet). CYSHCNet was founded in 2017 through a cooperative agreement with the Health Resources and Services Administration’s Maternal and Child Health Bureau.