The Development of a Care Guideline for Biliary Atresia Survivors with their Native Liver in Adolescence to Organize Daily Lives

2018 Fiscal Year Final Research Report

• Project/Area Number: 17H07104
• Research Category: Grant-in-Aid for Research Activity Start-up
• Allocation Type: Single-year Grants
• Research Field: Lifelong developmental nursing
• Research Institution: Sophia University
• Principal Investigator: Hiratsuka Katsuhiro 上智大学, 総合人間科学部, 助教 (30802475)
• Project Period (FY): 2017-08-25 – 2019-03-31
• Keywords: 看護 / 小児 / 思春期 / 親子 / 胆道閉鎖症 / 肝移植 / ケア / ケアガイドライン

Outline of Final Research Achievements

This study aimed to develop a care guideline that assists parents and adolescent and young adult patients living with biliary atresia and their native liver. The focus of the guideline is to support and organize their daily living activities and preparing for live-donor liver transplant. Nine patient and parent interviews were conducted to identified the processes that patients organize their daily living activities. And a proposed care guideline was developed based on the findings from first study and a literature review. Five nurse participants were interviewed regarding the appropriateness of its content and applicability.
As a result, the present study developed a care guideline for patients and their parents whom nurses might hesitate to perform interventions with until a treatment plan is decided. This guideline helps nurses identify opportunities for intervention, and organize step-by-step targeted goals and support the care of patients organizing their daily living activities.

Free Research Field

看護学

Academic Significance and Societal Importance of the Research Achievements

本研究では、患者が自ら療養生活を整えていく患者と親の能動的なプロセスを明らかにし、それに基づくアセスメントの視点を含むケアガイドラインを開発した。このガイドラインは、その時々の患者と親の状況に合わせ、適切な介入の機会を見出すために有用であり、今後、臨床現場での活用によって、肝移植の適応決定前の時期からのケアを可能にし、自己肝での生活期間の延長や、不要な肝移植治療への移行や再移植などの問題の抑制が望まれる。