CYSHCNet Research in the News
Paying Family Caregivers Could Alleviate Shortage Of Providers, Study Finds
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 study found that family caregivers were less likely to leave the paid role of caregiver when compared to non-family CNAs. They found slight differences in the number of hospital visits and how long the child was hospitalized.
Dr. Carolyn Foster served as lead author on this study, with family partner Christy Blakely, executive director of Family Voices Colorado.
To Keep Their Son Alive, They Sleep in Shifts. And Hope a Nurse Shows Up: Network Members Quoted in New York Times Article on Nursing Shortages – June, 2021
Network members Carolyn Foster M.D., Eddie Simpser, M.D., Cara Coleman, J.D. were quoted in a recent New York Times article discussing the impact of pandemic-driven nursing shortages on parents of children with intensive special needs. Hundreds of thousands of children in the United States require intensive home-care nursing services. Pay gaps and insufficient support for in-home nurses have been exacerbated by the COVID-19 pandemic, contributing to shortages of in-home nurses. This in turn places major strains on caregivers of children with complex medical needs.
An Almost Complete List of Services Used by Families and Children with Special Health Care Needs – January 2020

Network members Carolyn Foster M.D., Eddie Simpser, M.D., Cara Coleman, J.D. were quoted in a recent New York Times article discussing the impact of pandemic-driven nursing shortages on parents of children with intensive special needs. Hundreds of thousands of children in the United States require intensive home-care nursing services. Pay gaps and insufficient support for in-home nurses have been exacerbated by the COVID-19 pandemic, contributing to shortages of in-home nurses. This in turn places major strains on caregivers of children with complex medical needs.
Click here to view the complete list
Family Burden and Medical Complexity: Wrestling with the Meaning and Impact of Commonly Used Terms – January 2020

Meg Comeau, MHA, a parent of a young adult with special needs and a professional in the CSHCN field, suggests that terms such as “family burden” and “medical complexity” are viewed differently by parents and professionals. This difference can impact on how services are provided. She proposes reconciling those views, with the goal of creating a better system of care in this new brief.