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社会支持视角下渐冻症患者的需求研究 预览

The Needs Research of Amyotrophic Lateral Sclerosis Patients from Social Support Theory
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摘要 渐冻症患者面临着缺乏科学医疗方案、经济负担沉重、家庭护理压力大、信息获取渠道匮乏、死亡焦虑困扰、自我价值缺失等问题。从社会支持的视角,通过个案访谈的方式对渐冻症群体的现状进行深入调查,发现渐冻症群体的特殊需求为物质需求、行为援助、信息需求、情感需求和自我价值重建,在分析其需求产生的原因时发现其原因具有内在联系,层层推进自治特点:正式社会支持缺位导致家庭经济照护压力沉重、进而导致良好的家庭沟通模式难以建立、最终导致缺乏对病程的未来规划,患者难以达成自我价值的重建。对其需求和原因的探析可为渐冻症群体的社会工作服务提供参考。 Amyotrophic lateral sclerosis (ALS) patients are confronted with such problems as the lack of effective treatment, heavy economic burden, enormous caring pressure, limited access to information, death anxiety and sense of worthlessness. From the perspective of social support, deep investigation is conduct through case interview with them and their special needs are found, namely material needs, behavior assistance, information needs, emotional needs and self-value reconstruction needs. When analyzing the reason for such needs, the inner links are identified: the absence formal social support leaves heavy economic and caring burden to patients’ family, which makes it difficult for them to establish supportive family interaction model and plan for the future. The patients can hardly reconstruct their sense of worth. The analysis of ALS patients’ needs and the reasons could provide reference for relevant social work service.
作者 张培源 ZHANG Peiyuan(School of Political science and Law, University of Chinese Academy of Social Sciences, Beijing, 100089, China)
出处 《社会工作与管理》 2019年第2期49-56,共8页 SOCLAL WORK AND MANAGEMENT
基金 国家级大学生创新训练计划项目“社工介入下的渐冻人社会主持研究”(201716625075)。
关键词 罕见病 渐冻症 医务社会工作 需求 社会支持 rare diseases amyotrophic lateral sclerosis medical social work needs social support
作者简介 张培源(1997—),女,土家族,本科生;主要研究方向:医务社会工作。
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