Welcome to the CYSHCNet blog. Here we share stories and perspectives of children and youth with special health care needs (CYSHCN), their families and caregivers, and our academic researchers. Interested in sharing your story? Email us.
New Resource for Researchers Added to Primary Data Center
Aligning research with the concerns of patients and families is a top priority for CYSHCNet and its researchers. Although more and more studies involve lived experience partners, inconsistencies in the reporting of this involvement exist. To address this issue, a team of researchers has published international consensus on the key items to report to enhance…
National Research Agenda Cited at Montana AAP Annual Education Conference
The National Research Agenda was spotted by Patricia Notario, MD, the only complex care pediatrician in Montana. We are thrilled to see our work reaching areas of need. Interested in learning more about the agenda? Take this course to learn more!
Disability and Discrimination: A Call to Action for Creating Positive Change, Together
A recent study by Dr. Stefanie Ames and colleagues sheds light on the problem of discrimination against children with complex medical needs by the medical community, emphasizing its significance for children, families, and clinicians. CYSHCNet enthusiastically applauds Dr. Ames’s efforts and appreciates the insightful commentary by Dr. Cook and colleagues, which effectively raises awareness of…
New Study: Advancing Disability Education for Pediatric Trainees
Pediatric providers need your help! CYSCHNet researchers at Lurie Children’s want to talk with children with disabilities and their families, teachers, school administrators, and hospital administrators to: Parents, family caregivers, and guardians will be interviewed in groups together, while teachers and administrators will be interviewed in other focus groups. Anyone interested can participate by following…
Learning from Families of Children with Complex Health Issues
A team of family leaders, clinicians and researchers is interested in learning from families of children, youth or young adults with complex health issues. The team wants to understand what day-to-day life is like for families, and things that the healthcare system can do to improve family well-being. If you are a caregiver of a…
CYSHCNet Researcher Receives Funding to Improve Healthcare at Home for Children
Agency for Healthcare Research and Quality (AHRQ) Awards $2 Million to fund “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children“ Congratulations to CYSHCNet researcher Carolyn Foster, MD, MS, Attending Physician at Ann & Robert H. Lurie Children’s Hospital of Chicago, and Nicole Werner, PhD, Associate Professor at Indiana University Bloomington on their grant…
Disability, Discrimination, and Children with Medical Complexity
New Pediatrics Study Begs the Question: How Can Knowing These Perceptions Improve Systems of Care Disability-based discrimination in health care is happening. And it results in low quality of care, limited access, and negative health consequences. A new study from CYSHCNet researcher Stefanie Ames, MD, MS, looks at the themes children with medical complexity and…
Research spotlight: Do caregivers of young people with asthma feel discriminated against?
CYSHCNet researcher Stefanie Ames, MD, presents on social determinants of health and disparities for young people with asthma. Here’s the presentation on YouTube!
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 engage in work that matters. Tell us about the goals you have in the role…
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 a model we speculate could address workforce shortages while providing income to family caregivers. This…