Patient Nexus Typologies and Care Management Behaviors: A Case Study of Youth with Cystic Fibrosis

Abstract

This study applies and expands Mark Tausig’s patient nexus theory to examine how social support systems influence chronic illness management in youth with Cystic Fibrosis (CF), a life-limiting genetic disease requiring intensive daily care. While social science research recognizes the role of social context in health, less attention has been given to how disparities in social resources shape care management and health outcomes. Patient nexus theory, which views the “caregiving social network around the patient” as central to care behaviors, offers a framework for addressing this gap. Drawing on 21 virtual dyadic interviews with children with CF and their parents across three U.S. care centers, this study explores daily care routines, support systems, and experiences navigating CF. Qualitative analysis reveals five distinct patient nexus typologies: unique configurations of support, agency, and trust in care teams that shape adherence. Youth with greater support and agency demonstrated stronger care management behaviors, while those with limited support and lack of agency faced more challenges. These results underscore the importance of designing interventions that extend beyond individual-focused models to address the broader social and relational contexts impacting care. This is the first empirical application of patient nexus theory to pediatric chronic illness management.