Investigation of home care practices to promote and support home care for terminally ill children and their families

2022 Fiscal Year Final Research Report

• Project/Area Number: 19K11055
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Review Section: Basic Section 58070:Lifelong developmental nursing-related
• Research Institution: Asahikawa Medical College
• Principal Investigator: Mori Hiromi 旭川医科大学, 医学部, 准教授 (40532205)
• Co-Investigator(Kenkyū-buntansha): 矢田 しずえ 旭川医科大学, 医学部, 助教 (70865443)
• Project Period (FY): 2019-04-01 – 2023-03-31
• Keywords: 終末期にある子ども / 在宅療養 / 訪問看護 / 家族

Outline of Final Research Achievements

About 2,700 home nurse stations around Japan were given the opportunity to fill out an anonymous questionnaire on home care for terminally ill children. 401 stations replied. 127 had not provided home care to any terminally ill children in the past year, and 21 had served one to five, indicating few prospects for home care for terminally ill children.
Next, five home nurses caring for terminally ill children were interviewed. The nurses were aware of the importance of parents getting to shower their child with love and take care of them during the scant remainder of the child’s life. It was clear that when the nurses provided home care, they followed the parents’ lead and allowed the parents to play the central role in the child’s care.

Free Research Field

小児看護学

Academic Significance and Societal Importance of the Research Achievements

訪問看護ステーションを対象とした調査で終末期にある子どもの訪問看護を経験したことがある施設は少数であった。その結果から終末期を在宅で療養する子どもは少ないと推察された。また、訪問看護師への調査においても終末期にある子どもの訪問看護経験が乏しいために自信が持てず、躊躇している現状があった。その一方で、在宅での看取りを経験している訪問看護師は、終末期にある子どもが人生の残された時間を在宅で家族と共に暮らすことの意義を実感し、子どもが逝った後の家族のことも考え、後悔のない子育てを支援していた。終末期にある子どもが在宅で暮らせるような体制の整備が急務であることが明らかとなった。