意义治疗理论视角下渐冻症患者的困境与应对

Survival Dilemma and Coping Strategies of Amyotrophic Lateral Sclerosis Patients from the Perspective of Logotherapy

作为一种罕见病,渐冻症患者面临多重生存困境的挑战。以上海某二级医院就医的渐冻症患者为研究对象,采用质性研究的深度访谈的方法,探讨渐冻症患者面临的生存困境,包括来自个人层面的负向情绪和负面认知,以及罹患疾病所导致的生活状态的改变和与治疗相关的多重困境。进而,以意义治疗理论的视角,分析访谈资料提出渐冻症患者6种应对困境的策略,即疾病归因、感受爱与被爱、发掘兴趣、生命回顾、正向观念和理想信念。在此基础上,提出了政策上的倡导与医务社工介入的可能性。研究结果能够为进一步开展渐冻症患者的社会工作服务提供理论的框架。

As a rare disease,amyotrophic lateral sclerosis(ALS)patients face the challenge of multiple survival dilemmas.This article takes ALS patients who are treated in a second-level hospital in Shanghai as the research objects,and uses the in-depth interview method of qualitative research to explore the survival dilemma faced by ALS patients,including individual negative emotions and negative cognition,as well as changes in living conditions caused by disease and multiple predicaments related to treatment.Furthermore,from the perspective of logotherapy,it analyzes and proposes six strategies for coping with dilemma,namely,attribution of disease,feeling of love and being loved,discovery of interest,life review,positive concept and ideal belief.On this basis,it promotes the possibility of policy advocacy and medical social worker intervention.The research results can provide a theoretical framework for the further development of social work services for ALS patients.