关键词: 罕见病, 渐冻症, 医务社会工作, 需求, 社会支持

Abstract: 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.

Key words: rare diseases, amyotrophic lateral sclerosis, medical social work, needs, social support