How the Hope of People Living with HIV Cultivated？: Focusing on the “SHIP Newsletter” in the 1990s to Enhance the Health Literacy, and GIPA

Abstract

Greater Involvement of People Living with HIV/AIDS (GIPA)—the basic principle guiding the world’s measures to address AIDS—has not been adopted consistently in Japan. This article aims to consider, from the perspective of GIPA, the initiatives taken in the 1990s that fostered hope for the survival of people living with HIV. Analyses revealed that since gaining access to information concerning patient survival and activities of daily living was difficult, initiatives such as peer support and collaborative creation of medical information publications focused on improving “health literacy.” These initiatives helped people living with HIV (1) overcome the crisis where illness experiences are unvoiced, (2) improve their “capability” to accumulate wisdom by sharing information and feelings, and led to (3) a new social movement where patients contributed as citizens responsible for caring for others. In the future, modifying GIPA to include “greater involvement of people living with chronic illness” will be necessary.