What do family caregivers do when managing medications for their children with medical complexity?

Abstract

Using a work domain analysis and complementary thematic analysis, this paper aims to describe medication management work, its constraints, and complexities from the perspectives of family caregivers of children with medical complexity—a medically fragile segment of the pediatric population often dependent on multiple and complex medication regimens for survival and optimal functioning. Analyses were informed by data generated through observations of 12 care coordination clinic visits within a pediatric complex care program, semi-structured interviews of 11 family caregivers, and reviews of program documents. Our results show that family caregivers: (1) formulate medication management goals, identify values and criteria to judge goals but these may not necessarily be acknowledged and explicitly supported by system resources and healthcare professionals (2) are engaged in a range of complex medication management tasks that are both physically and emotionally demanding without the support of well-designed tools and resources to enhance their work.