Project Summary
There are approximately 11.2 million children with special health care needs (CSHCN) requiring treatment at school; 41% of families report unmet care coordination needs. The fragmented coordination among this vulnerable population, primary care providers, specialists, and school services leads to inefficiencies, gaps in care, dissatisfaction, and poor outcomes. School nurses deliver significant care to CSHCN, yet are not care team members. Our project will develop participatory research partnerships with CSHCN and their families to ensure their voice in a research agenda and local and national policy. First, we will partner with school nurses and researchers in three communities to enhance local capacity for future patient-centered research. Second, we will conduct community cafés with local CSHCN and their families to 1) identify areas of concern that have affected their health, which will serve as a basis for future research questions; 2) explicate facilitators and barriers to care coordination; and 3) name crucial stakeholders for future work. Third, we will establish the National Student/Family-Centered School Health Collaborative (NSCSHC) to unite, support, and coordinate these efforts and create a national dialogue on CSHCN. An advisory board consisting of CSHCN and families and key community stakeholders, as well as national-level leaders and stakeholders, will be developed. The NSCSHC will serve a critical role in breaking down the typical silos of communication and coordination that thwart efficient, effective, and comprehensive child health services delivery and negatively affect health outcomes. This two-tiered approach positions us to conduct future comparative effectiveness research while enhancing local children- and family-centered needs.