The AFFIRM 2021 Study (Assessing Family-Friendly Care in Self-Management)
Caregivers of children with special health care needs (CSHCN) must obtain and coordinate services from multiple providers. These providers can assist families by offering Self-Management Supports (SMS) to help them set realistic goals, create action plans, and navigate health care and social services systems. Though SMS are associated with improved outcomes, they are underdeveloped and underused in pediatric practices. This grant will fund a study designed to develop and pilot a survey instrument to collect information about SMS needs from families of CSHCN in California whose conditions are medically complex and who have low income, are non-English speaking, or identify as racial or ethnic minorities. The grant goals are to produce a survey instrument suitable for broad-scale use and to distill lessons learned about research methodologies with vulnerable patient populations to inform wider application.