Family Assessment and Momentary Evaluation (FAME): Enhancing Self-Management in Youth with Spina Bifida - Project Summary/Abstract. Spina bifida is the most common congenital chronic health condition of the central nervous system with the highest rates of live births occurring in Hispanic/Latinas when compared to non-Hispanic women. Rising healthcare utilization costs and a 15-year increased life expectancy over the past decade have heightened the priority to prevent costly adverse outcomes, optimize health in chronic conditions, and improve quality of life (QOL) through self-management. Spina bifida self-management requires a complex daily regimen (e.g., bladder catheterization, bowel evacuation) and often involves caregivers. Successful self- management must be appropriate for the individuals’ developmental stage, cognitive and physical abilities, with an incremental transfer of responsibilities from the caregiver to the child. There is a lack of understanding in how self-management skills are fostered, including the facilitators and barriers to responsibility for care and the development of self-management behaviors. Little is known about how the self-management process is influenced by the family’s beliefs, norms, and culture and is initiated and implemented in the home environment. There is a significant gap in knowledge in understanding how the self-management process occurs in real time, including understanding facilitators and barriers, in the context of the family and home environment. The objective of this study is to examine self-management and family interactions for a sample within the home in real time using an innovative ecological momentary assessment (EMA) approach. In a national sample of 180 families of a child 8 – 15 years old with spina bifida, where 60 identify as Hispanic/Latino, this prospective study will deconstruct self-management development in youth in the home to identify adaptive family function patterns using a multimethod approach (survey, interview, observation including 7-day EMA). This proposal will provide evidence that (1) identifies facilitators in the family environment (e.g., family cohesion) associated with the process of self-management (e.g., skill mastery, responsibility for care), (2) identifies barriers in the family environment (e.g., family stress) proximal to self- management behaviors that moderate the relationship between the process of self-management (e.g., skill mastery, responsibility for care) and self-management behaviors (e.g., condition self-management, independent living self-management), and (3) explains how the level of independence in self-management behaviors moderate the relationship between the process of self-management and distal outcomes (e.g., health status, QOL). This proposal responds to a research priority identified by the spina bifida community and the NICHD goal of advancing understanding of child development to identify sensitive time periods when methods to “enable self-management” will have the greatest impact in youth with chronic health conditions and disabilities. This study will inform the development of family-focused, strength-based interventions for people living with spina bifida.
