Support for improving QOL for patients with progressive diseases: from the perspective of individual Quality of Life

2016 Fiscal Year Final Research Report

• Project/Area Number: 26870714
• Research Category: Grant-in-Aid for Young Scientists (B)
• Allocation Type: Multi-year Fund
• Research Field: Social welfare and social work studies; Clinical psychology
• Research Institution: Shimane University (2016); Ritsumeikan University (2014-2015)
• Principal Investigator: FUKUDA Mari 島根大学, 医学部, 助教 (70706663)
• Project Period (FY): 2014-04-01 – 2017-03-31
• Keywords: QOL / 難病 / ナラティヴ / SEIQoL-DW

Outline of Final Research Achievements

The purpose of study was to demonstrate their individual quality of life (iQOL) on persons with neuromuscular disease and to discuss about the concept of iQOL from the perspective of Trajectory Equifinality Approach (TEA). The patients’ iQOL were measured by use of “the Schedule of the Evaluation for Individual Quality of Life -Direct Weighting”. As a result, the iQOL of patient with progressive disease was not only related to their physical disability and health, but also to social life and life events. Therefore, medical care toward improving iQOL for patients in home healthcare or long-term care facility will need to comprehensively address both the medical intervention and the iQOL including individual benefits and values. In addition, the evaluation process of the SEIQoL-DW consisting of patient and investigator provided patients with opportunity to express their daily life, and it may be also the process by which patients share autonomous decision-making with investigators.

Free Research Field

医療心理学，医療社会学