[13-2] The current situation and issues to be addressed regarding muscular dystrophy patients’ transition to living outside of institutions in Japan
Presentation language：Japanese
The history of the treatment of muscular dystrophy in Japan is long, and there are many patients who live in specialized muscular dystrophy wards responsible for their care and education. As times have changed there has been a transition from institutionalization to patients living in their local communities, but this transition has not progressed very far in the case of muscular dystrophy patients. The purpose of this study is to interview support providers involved in muscular dystrophy patients’ transition to life outside of institutions and to clarify and examine the process leading up to this transition and the obstacles that must be overcome. The results of this study show that the views of hospitals and families who prioritize patients’ safety and those of support providers who prioritize their quality of life differ, and considerable effort is required to achieve mutual understanding. There is a desire for institutions to function as a safety net and to provide support in transitioning to living in the community to patients whose condition is stable. Cooperation between healthcare and welfare services and the construction of systems adapted to the local community are important to the realization of a smooth transition to living outside of institutions.