The AFFIRM Pilot Study: Development of a Survey Instrument for Caregivers of CYSHCN to Assess Self-Management Support

Self-management support (SMS) for caregivers of children and youth with special health care needs (CYSHCN) encompasses the activities and assistance provided to increase families’ skills and confidence in managing their children’s health. Little is known about the extent to which SMS for caregivers of CYSHCN is provided in pediatric care. The Assessing Family Friendly Care in Realizing Self-Management (AFFIRM) study team developed and piloted a survey to understand how diverse families receive SMS from their medical care team. This report outlines the key lessons learned on survey content, structure, and research methodology, which have been applied to the 2024-2025 AFFIRM California survey. The statewide study will help clinicians, policymakers, and funders focus on development of SMS resources and processes in clinics that are the most valuable to families of CYSHCN, and has been designed to be similarly implemented in future studies within pediatric clinics throughout the country.