ICT-ENABLED SELF-MANAGEMENT OF CHRONIC DISEASES THROUGH VALUE SENSITIVE DESIGN

Abstract

This dissertation investigates the values of the patients with chronic diseases and conditions in using technology-enabled self-management (SM) systems through three essays. Self-management, in the healthcare context, is defined as patient’s ability to manage symptoms, psychological consequences, and lifestyle changes imposed by a chronic disease. Our investigation is conducted based on three parts of the value sensitive design (VSD) methodology consisted of conceptual, empirical, and technical investigations. The first essay is a conceptual investigation of values, system features, and SM activities. In the first essay we conduct review of the extant literature to uncover the values important to the patients with chronic diseases and examine how those values are implicated in the system features used to perform SM activities. Our literature review and analysis provides a theoretical understanding for the main concepts in our work, SM, values, and system features. The second essay is an empirical investigation scoped down to diabetes. In this essay we examine a SM system, a diabetes mobile app, to reveal the values important to the patients-users. We conduct a field study interviews to collect human responses. Interview data collected from 20 diabetic patients is analyzed and coded based on interpretive principles and VSD premises. Our findings show the total of 12 values, 4 categories of system features, and 7 SM activities. We define the relationships between SM activities, values, and system features by providing examples from interview data. We propose a conceptual model that shows how diabetic patients use system features to perform certain SM activities while certain values are fulfilled. Our model is developed based on the work system theory that defines systems within their ecosystem broader than technological features. The third essay is a technical investigation of the SM systems. In this essay we elaborate on how technological features can hinder or advance SM activities. We propose design principles for designing SM systems based on characteristics of digital technologies. Our theoretically driven principles are guided by the system design methods in design science research and informed by the technological advances of the mobile technologies and platforms.