Background
Children and youth with special health care needs (CYSHCN) have chronic conditions that require extensive health care and supportive services. Self-Management Support for caregivers of CYSHCN refers to assistance to increase families’ skills and confidence in managing their children’s health. Little is known of the extent to which SMS is provided in care for CYSHCN, and there are no measures tailored to this population. In collaboration with families of CYSHCN, disability self-advocates, pediatricians, and pediatric researchers, the research team developed and pilot tested an instrument to assess SMS in pediatric practices. In 2024-25, the research team will conduct a statewide survey across 8-10 clinical sites to better understand the status of self-management support for families in California.
Study Factsheets
Request a copy of our AFFIRM Pilot Study Report by emailing us at: [email protected]
This study was made possible due to generous support from the Lucile Packard Foundation for Children’s Health.