Evaluation of the nursing care that connects hospitals and homes in hemophilia care

2019 Fiscal Year Final Research Report

• Project/Area Number: 15K11598
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Research Field: Clinical nursing
• Research Institution: Osaka Prefecture University (2018-2019); University of Hyogo (2015-2017)
• Principal Investigator: KUTSUMI Masami 大阪府立大学, 看護学研究科, 准教授 (60549583)
• Co-Investigator(Kenkyū-buntansha): 大村 佳代子 兵庫県立大学, 看護学部, 准教授 (30722839)
• Project Period (FY): 2015-04-01 – 2020-03-31
• Keywords: 血友病 / 保因者 / 病いを知る過程 / 看護

Outline of Final Research Achievements

The purpose of this study was to clarify the process by which hemophiliacs and their families become aware of hemophilia, and the current state and issues of nursing care that connects hospitals and homes in hemophiliac care.
While experiencing the pain of bleeding, hemophiliacs gradually learned in his life that he had hemophilia. The hemophiliacs daughter also knew that she was a carrier, but she became more aware of being a carrier by the time she had a child.
It was suggested that a large number of outpatients may make differences in providing care to hemophiliacs and their families.

Free Research Field

臨床看護学

Academic Significance and Societal Importance of the Research Achievements

わが国における血友病および類縁疾患患者数は8000人程の希少疾患である。患者・家族・保因者は一生涯病いとともに生活を送っていかねばならずライフステージによって直面する課題は変遷していく。
看護師をはじめとする医療者は患者らが円滑に生活を送ることができるよう支援することが求められる。本研究は希少疾患である血友病患者・家族・保因者が血友病を知っていく過程および血友病への看護の課題および現状を把握し明らかにすることで、血友病をはじめとする遺伝疾患を有する人や慢性疾患を有する人へのケアの質向上に寄与することができる。