Development of patient perspective-based daily life support model for patients with pemphigus and pemphigoid

2023 Fiscal Year Final Research Report

• Project/Area Number: 20K19078
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 58060:Clinical nursing-related
• Research Institution: Mukogawa Women's University
• Principal Investigator: TANEMURA Chika 武庫川女子大学, 看護学部, 助教 (60849529)
• Project Period (FY): 2020-04-01 – 2024-03-31
• Keywords: 天疱瘡 / 類天疱瘡 / 日常生活支援モデル

Outline of Final Research Achievements

This study aimed to clarify the impact and support needs of patients with pemphigus and pemphigoid in daily life related to symptoms and treatment from the early disease stage through the treatment process and develop a daily life support model.
In the first stage, patient support needs were examined via a survey of domestic and international literature and descriptions within patient association newsletters. In the second stage, a semi-structured survey was conducted of 13 patients with pemphigus and pemphigoid, and the results were analyzed qualitatively and descriptively to identify their support needs. In the third stage, a questionnaire developed based on the results of the second stage was administered to 174 outpatients. The main axes of the support needs of three factors were extracted and a daily life support model was developed.

Free Research Field

臨床看護学

Academic Significance and Societal Importance of the Research Achievements

本研究成果の学術的意義は、これまで質的にはほとんど明らかにされていなかった患者の生の声を汲み上げ、カテゴリ化することで患者が日々の生活の中で抱える困難感の様相を明らかにした点である。また、これをもとに質問紙を作成し、その調査結果から支援ニーズの主軸を抽出した点である。
社会的意義は、天疱瘡・類天疱瘡患者が疾患や治療により、日常生活においてどのような困難感を抱え、支援ニーズがあるのかを明らかにすることで、この疾患や患者への理解が深まり、患者が適切なケア、支援を受けられることに繋がることである。