Children with medical complexity (CMC) are a growing population of medically fragile children with special health care needs (between the ages of birth to 21) with complex, multisystem disease states. Nearly 1 percent of all children (roughly 320,000 to 560,000) have medical complexity at the highest levels, yet these children account for up to a third of all pediatric health care spending and more than half of all unintended readmissions. Much of the family-centered self-management (hereafter self-management) occurs in the home and community-based setting with immense caregiving demands. The goal of this study is to use a theoretically-driven perspective to systematically elucidate the range of self-management experiences across families of CMC embedded in diverse social networks and contextual environments. Previous pediatric research has not articulated self-management experiences in ways that account for multiple diagnoses, engagement of social network members, or simultaneous consideration of individual and environmental factors. In other words, self-management has not been studied through assessment of both individual/family/social network level factors and system level factors simultaneously. Consequently, the aims of this study are: (1) Examine how self-management responsibilities for CMC are distributed and negotiated among multiple social network members and (2) explicate how individual and systems level factors influence approaches to self-management for CMC. This study takes a qualitative descriptive approach to understand self-management practices in CMC and draws on theoretical perspectives from nursing, systems engineering, and public health. It further draws on novel analysis methods that enable understanding of agreement, disagreement, and differential understanding among the multiple individuals involved in self-management of CMC. Future research efforts will include a larger, multisite study which builds upon the findings by assessing changes in self-management practices over time and capturing multiple perspectives on patient-reported distal and proximal outcomes for CMC. Findings from these combined studies will focus on developing and testing interventions (educational, technological, and policy oriented) to determine how different ways of leveraging and configuring social networks and contextual environments of families of CMC impact patient-reported, clinical, and utilization outcomes.
The goal of this study is to use a theoretically-driven perspective to systematically elucidate the range of self- management experiences across families of children with medical complexity (CMC) embedded in diverse social networks and contextual environments. The long-term objective of this research is to improve the health and quality of life of CMC and their parents/guardians by developing a foundation for interventions focused on enhanced self-management.
