QoL Assessment and Design of Care for Patients with Intractable Juvenile Neurological Disease Using the SEIQoL-DW Over Time Method

2022 Fiscal Year Final Research Report

• Project/Area Number: 16K12050
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Multi-year Fund
• Section: 一般
• Research Field: Clinical nursing
• Research Institution: Hiroshima International University
• Principal Investigator: Akiyama Satoru 広島国際大学, 看護学部, 教授 (50284401)
• Project Period (FY): 2016-04-01 – 2023-03-31
• Keywords: SEIQoL-DW / 若年性パーキンソン病 / QOL / UUIS / DRS / SUBI / MASAC-PD31 / 神経難病

Outline of Final Research Achievements

The aspects of changes in the quality of life (QoL) of patients with juvenile Parkinson's disease and their meanings were studied over time by assessing them using the SEIQoL-DW over several years.
Due to the nature of this disease, many patients experience a variety of losses that are directly related to their lives over the long term as the disease progresses. However, there were some patients whose subjective quality of life did not decrease, and some in whom it even increased. The common trait of patients whose subjective quality of life did not deteriorate was having a new role or hobby they found, and interacted actively with the outside world. They also shared an optimism that allowed them to gain something from their loss, or change their mentality around it, suggesting that nurses should be aware of the above points in order to have effective and positive interactions with young patients with degenerative neurological diseases.

Free Research Field

臨床看護

Academic Significance and Societal Importance of the Research Achievements

本研究を長年継続することにより、何が原因・きっかけで患者のQOLの値が変動したかを明らかにすることで、看護学の視点で患者のQOLを向上させるための具体的なケアの方策を検討することができる。そして、SEIQoL-DWを実施することを通して、対象者のナラティブの変容に貢献できる可能性がある。さらに、まだ保健医療従事者にさえあまり知られていない若年性パーキンソン病患者の問題とケアについて、本研究の成果によって広く社会に啓蒙することができる。