Systematization of Life-Focused Literacy for Predicting the Difficulties with Parents in Struggle with Their Children's Cancer

2022 Fiscal Year Final Research Report

• Project/Area Number: 20K19163
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 58070:Lifelong developmental nursing-related
• Research Institution: Tohoku University
• Principal Investigator: Irie Wataru 東北大学, 医学系研究科, 助教 (60757649)
• Project Period (FY): 2020-04-01 – 2023-03-31
• Keywords: Precision Health / 家族支援 / 生活 / 小児がん / ピアサポート / インターネット / ヘルスリテラシー / きょうだい支援

Outline of Final Research Achievements

The aim of this study is to systematize the literacy that enables parents of children with childhood cancer to manage their daily lives successfully. This literacy has the potential to anticipate issues that may arise in their upcoming lives and to reduce difficulties in coping with them.We integrated the results of (1) aggregation of the content of life-related information on the Web, (2) literature review of family living needs, (3) questionnaire survey of unmet information needs among family members, and (4) interview survey of childhood cancer survivors with detailed life situations. The results showed that life-focused literacy is enhanced by information from surrounding families and healthcare providers. In addition to this, we found that there are at least 37 components of a family member's life of care. Finally, we developed and released "Familiy-PON," a Web site to facilitate the recuperation of families with children affected by pediatric cancer.

Free Research Field

小児がん看護

Academic Significance and Societal Importance of the Research Achievements

本研究では、小児がんの子供をもつ親が経験する可能性のある生活上の問題の予見や、その対処をするために必要なリテラシーの体系化を図った。研究成果は小児がんの子どもをもつ家族の療養生活を支援するWebサイト「Familiy-PON」を開発し、公開した。
サイトは療養生活を送っている家族が受け取ることを想定して構築され、本研究の成果のほか、小児がんの子どもと家族への支援に携わる様々な専門職や経験者家族らの声が集約化されている。