Federal Grant Award Summary

Loyola University of Chicago's Health Sciences Campus received a $689,428 Project Grant award from the National Institute of Child Health and Human Development (NICHD) under the Child Health and Human Development Extramural Research program (CFDA 93.865), effective June 15, 2026, through March 31, 2031. The award funds the Family Assessment and Momentary Evaluation (FAME) study, which will examine self-management behaviors and family interactions in youth aged 8-15 years with spina bifida using an innovative Ecological Momentary Assessment (EMA) approach. The research will analyze real-time family dynamics and self-management development within home environments across a national sample of 180 families, including 60 families identifying as Hispanic/Latino, to identify facilitators and barriers to the complex daily care regimen required for spina bifida management, such as bladder catheterization and bowel evacuation.

The primary deliverable is a prospective, multimethod research study designed to deconstruct the self-management development process in youth with spina bifida by examining adaptive family function patterns. The study addresses a significant knowledge gap regarding how self-management skills are fostered in real-world contexts, particularly within diverse cultural and family belief systems. Findings are intended to inform strategies for optimizing health outcomes and quality of life in youth with spina bifida by enhancing understanding of the incremental transfer of care responsibilities from caregivers to children and identifying evidence-based approaches to self-management intervention development.