Establishment of a network that can respond to disaster centered on community-based self-help groups for intractable disease patients

2023 Fiscal Year Final Research Report

• Project/Area Number: 19K19763
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 58080:Gerontological nursing and community health nursing-related
• Research Institution: Prefectural University of Kumamoto
• Principal Investigator: Matsumoto Chiharu 熊本県立大学, 総合管理学部, 准教授 (30452874)
• Project Period (FY): 2019-04-01 – 2024-03-31
• Keywords: 難病 / 患者会 / 災害 / 地域 / ネットワーク

Outline of Final Research Achievements

Through interviews with intractable disease patients and their families affected by the Kumamoto Earthquake, the following issues were raised as challenges in disaster: (1) raising disaster awareness among intractable disease patients themselves, (2) giving consideration to intractable disease patients at evacuation centers, (3) making welfare evacuation centers well known, and (4) ensuring support in times of emergency through information disclosure from intractable disease patients. In a group discussion among leaders of community-based self-help groups for intractable disease patients , it was also revealed that in order to solve these issues, it is necessary to establish a network of self-help groups for intractable disease patients in the Prefecture, have leaders meet regularly to share information on disaster prevention, encourage residents, municipalities, and health centers, and increase the number of people who understand and support them in the community.

Free Research Field

公衆衛生看護学

Academic Significance and Societal Importance of the Research Achievements

国内外において災害時における難病患者支援についての研究は乏しい。よって、本研究によって災害時に難病患者が抱える課題やその解決策を明らかにできたことは学術的、社会的に意義がある。また、今後、本研究の結果をもとに、難病患者会を核とした災害時にも対応できるネットワークが構築できれば、災害時要援護者とされる高齢者や障がい者による当事者組織を核としたネットワークの構築にも応用できると考える。