Development of an Assessment Tool to Support Children with Congenital Heart Disease and their Families During Transition to Adulthood

2018 Fiscal Year Final Research Report

• Project/Area Number: 15K11710
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Research Field: Lifelong developmental nursing
• Research Institution: Saitama Prefectural University
• Principal Investigator: SAKURAI IKUHO 埼玉県立大学, 保健医療福祉学部, 准教授 (30708516)
• Project Period (FY): 2015-04-01 – 2019-03-31
• Keywords: 移行期支援 / 成人先天性心疾患 / 小児慢性疾患 / 思春期 / 若年成人

Outline of Final Research Achievements

Children with congenital heart disease (CHD) need to transition from pediatric to adult health care as they enter adulthood.This study created an assessment tool for supporting such patients and their parents during the transition and examined ways to utilize the tool. The following aspects were extracted: patients’ understanding of the disease and prevention, self-care related to the disease, and preparations for becoming an adult. Also, it was found that nurses respected patients and engaged with them in such a way that the patients maintained their autonomy. Further, nurses provided educational support to patients and their parents since the patients were young. The study highlighted the role of nurses working within a team as well as issues related to the transition. Going forward, it will be necessary to devise an educational program to provide seamless support for child-to-adult transitions primarily through collaboration between departments providing pediatric and adult care.

Free Research Field

小児看護学

Academic Significance and Societal Importance of the Research Achievements

本研究は、成人先天性心疾患患者と親が小児の診療から成人の診療へ移行するためのアセスメント（査定に関する）ツールの作成とその活用方法を検討することを目的とし、国内外の論文や専門家会議および研修会から項目を抽出し、看護師へのインタビューによりその内容を精選した。結果、患者の病気とその予防に対する理解や、病気に関連したセルフケア行動、大人になるための準備等に関する査定内容が抽出され、それらを活用した看護師の支援と、成人科への移行に関する課題が示された。これらは、今後小児成人の連携を中心としたシームレスな移行期支援を行ううえで重要であり、今後はさらなる支援の充実を図っていく必要がある。