The following definitions guide our work:
Children and Youth with Special Health Care Needs, or CYSHCN
Approximately 1/5 of all kids in the U.S. have a special health care need. A CYSHCN may be medically-complex, meaning many areas of life are impacted, possibly over the child’s lifetime. Or, they may have a single diagnosis that temporarily impacts the child and family. And everything in between and beyond.
A common theme in a CYSHCN’s life is that their needs require systems to work together. For example, a social worker in an ear, nose, and throat clinic might collaborate with a school audiologist to make classroom accommodations for a kindergartner with temporary hearing loss.
Another example might be a college freshman with a rare disease. Because of medical advances, she’s outlived her “childhood” illness. Now she needs to find an “adult” care team, even though they likely haven’t heard of her condition since medical school.
These are the MDs, PhDs, MPHs, RNs, PAs, DOs, students, etc. whose job is to advance what we know about their areas of study. For CYSHCNet, these are researchers who look at the health care system and how it impacts life for CYSHCN and their families. Our researchers are working together at 18 academic institutions across the U.S. The work is funded by a cooperative agrement from the Health Services and Resources Administration (HRSA) Maternal and Child Health Bureau (MCHB).
Families and Caregivers
The people who care for CYSHCN continue to inform our research in incredible ways. They help us ask better questions and let us know when we’re asking the wrong questions. They inform all areas of our work–even the definition of “family.” The people who love, care for, and support CYSHCN are vast. It’s not as simple as including parents only. It’s also spouses, siblings, grandfathers, grandmothers, aunts, uncles, and cousins. It’s neighbors, friends, teachers, and other parents of CYSHCN. They love their CYSHCN and provide the type of care many of us might think should only happen in a hospital. We continue to learn more about the level of care they provide at home. Our group is working to understand so we can help support caregivers in the areas we can influence, such as care coordination, financing—even health care policy.
Lived Experience Partners
This group is made up of families, caregivers, and anyone involved in the care of CYSHCN and CYSHCN themselves. Hypothesizing in our clinics and offices won’t get us where we need to be. The lived experiences of CYSHCN and the people who love them should be our guide in any study we embark upon.
Interested in participating?
HOW DO WE KNOW WHICH TOPICS MATTER MOST TO CYSHCN AND THEIR FAMILIES?
We asked them. 800 stakeholders shared their thoughts and opinions. We used a reliable method, called the UCLA/Rand Appropriateness Method, to extract the data that now informs a National Research Agenda. The families, caregivers, providers, and other stakeholders we surveyed told us that these areas were most important. This includes:
- Child health, including social determinants of health
- Family health
- Caregiving for CYSHCN
- Care models
- Health care financing
- Youth-adult transitions
We help CYSHCN and their families by advancing knowledge and implementation of optimal health systems through innovative, rigorous multi-site studies, far reaching dissemination of findings, meaningful partnerships with families, and strong training of emerging CYSHCN investigators.
Our vision is to be the pre-eminent engine for creating and promoting excellence in national CYSHCN research, bringing expert investigators together with family leaders and young investigators, to improve the health, wellbeing, and quality of life of CYSHCN and their families.
National Research Agenda
Below is a video abstract by Dr. Ryan Coller, who highlights the rationale behind the creation of the National Research Agenda, the process behind defining key priority research areas and a summary of the six suggested sub-topics for future research.
Check out our latest blogs
What Does True Family Partnership in Research Look Like?
Nikki Montgomery shares her experience as program and communications manager of Family Voices AND as a parent of a medically-complex child. An expert in plain language and health literacy, Nikki is passionate about helping families and researchers come together to…Read more..
New Journal of Pediatrics Study Examines Colorado Medicaid’s Paid Family Caregiving Program
Colorado allows parents to be employed as certified nursing assistants (CNAs) for their children. A new network study compared paid family CNAs providing skilled care to children with medical complexities to non-family CNAs, looking at retention and hospitalization rates. It’s…Read more..
Lessons in Humility: Building a Foundation for a Regional Network of Complex Care
A Conversation with Neal deJong, MD, MPH (University of North Carolina Division of General Pediatrics) and David Ming, MD (Duke University Departments of Medicine, Pediatrics, and Population Health Sciences) It was supposed to be a one-time regional convening in North…Read more..