Social rehabilitation experiences of people with a history of Hansen's disease: interviews of readmitted residents in a sanatorium

PURPOSE: This study focused on the reflections of people with a history of Hansen's disease who once experienced social life and then returned to their sanatorium again. The purpose was to clarify what they think about their experiences of social life outside of institutions. METHOD: Study participants were people with a history of Hansen's disease who had experienced social life outside of the sanatorium and are now living in a national sanatorium with good ADL. The study was based on a semi-structured interview, the data being categorized with the focus on "situations or topics affect by Hansen's disease". Thirteen people agreed to participate in the study. RESULTS AND DISCUSSION: Six categories were abstracted: "maintaining a good condition," "anxiety about relapse or illness," "medical service," "coping with Hansen's disease in social life," "relationships with others," and "means of livelihood." Hansen's disease affected their lives in 2 aspects; one was "sawagu (recurrence of the disease)" and the other "kakusu (concealing the disease)." "Sawagu" was related to "anxiety of the disease" and "intention of maintaining a good condition." "Kakusu" affected the way of "coping with the disease in social life" and "the relationship with others." "Medical service" was important for both "sawagu" and "kakusu." Patients were visiting hospitals and taking medicine to avoid "sawagu," while trying to "kakusu" when they consulted with physicians. Similarly, both "sawagu" and "kakusu" interacted with each other when the participants needed to work and earn a living. All participants looked back at their social life as a "good experience" because they were satisfied with the sense of accomplishment or fulfillment the experience had given them. CONCLUSION: Participants of the study looked back at their social life as a "good experience." Hansen's disease affected their social life in 2 aspects; "sawagu" and "kakusu." It is necessary to alleviate difficulties with both of these so that people with stigmatized disease such as Hansen's disease can maintain normal lives in society.