It Feels Like I'm Managing Myself

Nearly 37 million people live with HIV globally and recent advances in medicine have transformed HIV to a chronic disease, if managed. Previous research in Personal Health Informatics has investigated how people self-manage other chronic conditions, such as diabetes, by tracking and reflecting on their health information but there is little knowledge of how people do so for complex and socially stigmatized diseases like HIV. A better understanding of their specialized needs could lead to the development of more appropriate tools to self-manage their condition. Our paper introduces an iterative process model of Personal Health Informatics. We then describe the results of an empirical study involving HIV+ adults aimed at understanding their issues, concerns and actions in each of the stages of this process model. We provide implications for the design of personal informatics tools and open research directions that can lead to better self-management for people living with HIV.