Thick description of the life of intractable diseases using narrative methods

本研究的目的是为了心理治疗难治性疾病患者的生命。许多用于测量健康相关生活质量的工具只关注身体功能，而忽视了患者的福祉。我使用定性的和相当新的方法来治疗病人的生命。这些是SEIQOL（个人生活质量评估表）和TEM（轨迹均衡性模型）。在实证研究中，采用SEIQOL来描述患者三年的生活质量相关经历。这项纵向调查揭示了患者生活质量的维持和转变，而不是患者病情的恶化。在理论部分，发明了TEM的基本方法论工具，提出了“山脉自我”的心理自我模型。通过这项研究，有可能建立一个与难治性疾病（Nambyo）患者生活有关的新的心理学分支学科。

The purpose of this study is to psychology for treating the life of Nambyo(intractable diseases) patients. Many instruments used to measure Health Related QOL focus narrowly on physical functioning and disregard the well-being of patients. I use the qualitative and rather new methodology for treating the patients' lives. These are SEIQOL(the Schedule for the Evaluation of Individual Quality of Life) and TEM(Trajectory Equifinality Model). In empirical study, SEIQOL was conducted for describing a patient's QOL-related experiences for three years. This longitudinal survey reveals the maintenance and transformation of patient's QOL instead of patient's deterioration of disease. In theoretical part, TEM's basic methodological tools were invented and the model of psychological self which is called "mountain range selves" was proposed. A possibility of a new sub discipline of psychology concerned with the lives of Nambyo(intractable diseases) patients has been established by this study.