‘루게릭 네트워크’ 온라인 환자공동체 참여경험

Abstract

This study explores the experiences of patients and their guardians suffering from Amyotrophic Lateral Sclerosis (ALS), a rare intractable disease called Lou Gehrig's disease (ALS), by participating in an online patient community activity called 'Lou Gehrig’s Network'. To this end, after diagnosing Lou Gehrig's disease, in-depth interviews were conducted with 10 patients and their guardians participating in the 'Lou Gehrig’s Network' during the course of fighting the disease and analyzed using a grounded theory approach (Strauss & Corbin, 1998). As a result of the study, first, 54 concepts, 33 subcategories and 9 upper categories were derived. Second, a paradigm model for the adaptation process through online community participation after the diagnosis of Lou Gehrig's disease was derived. Specifically, as informal learning, there were learning experiences in indirect experience learning, direct experience learning, and mutual learning. Psychological recovery was also possible by active self-exposure, participation, mutual exchange, and information sharing in the community. Next, the interaction between the members of the Lou Gehrig Network confirmed learning and information exchange, community bond formation, and emotional interaction. Each interaction was deeply linked to each other rather than divided into independent interactions, which affected study participants' learning and psychological recovery. At the same time, the study participants served as mutual aid and mentors in the community. This suggests that mutual dynamics are actively taking place among members within the community. The characteristics of the online patient community, the Lou Gehrig Network, functioned as a self-help group, and at the same time served as a medium for information storage and interaction. Meanwhile, the “Lou Gehrig’s Network” was helping participants learn for life by acting as a learning community. Finally, based on the above results, the significance of this study and suggestions for future research were discussed.