MATSUMOTO Etsuko

The introduction of the long-term care insurance system and revisions to the Medical Care Act have increased the number of patients with intractable diseases who receive care in home settings. However, dissatisfaction and confusion were reported by patients and their caregivers when managing intractable diseases at home. To address this, a community care system was suggested as a "new system to support intractable diseases." This is in line with the Intractable Diseases Act, which aims to achieve and build collaborative relationships in which both parties and supporters can work together. Thus, in this study, the formation of a system for long-term, home-based, and community-centered care for patients with intractable diseases was composed across four chapters. This project also aims to investigate the feasibility and implementation of a community care system for intractable diseases. Chapter 1 reviews the history and research of community care systems for intractable diseases. It outlines the absence of specific measures for the establishment of a regional community care system, and the challenges of addressing individual cases of intractable diseases as regional issues. It also emphasizes the importance of understanding and addressing drastic changes in medical care of such patients in a timely manner. However, presently, little is known about the actual situation of patients with intractable diseases. Chapter 2 examines how patients with intractable diseases who receive home-based care rebuild their own lives. For these patients to continue their life at home, they must strive for self-management and receive the necessary support to build a lifestyle that adapts to long-term medical care. Building trust with health care providers and their engagement with systemic gaps has a significant impact on patients’ quality of life. Chapter 3 explores the experiences of a patient with an intractable disease who struggles with home-based care, its limitations, and deciding when to visit a health facility. They share that their life is unstable and repeatedly restructured, forcing them to make passive decisions when visiting a health facility, thereby experiencing a loss of autonomy and resulting in feelings of “giving up.” In Chapter 4, we examine the possible implementation of a community care system based on our findings. Such systems for intractable disease patients require a dual structure of common and individual systems, which can complement each other and enable multidisciplinary, professional support for intractable disease patients with a high level of individuality. The establishment of community care systems for patients with intractable diseases can lead to the construction of a more comprehensive healthcare system that addresses a wider range of health concerns.