罕见病患者家庭的压力分析及社会工作介入路径探讨  

Analysis of family stress of patients with rare diseases and feasible approach to social work intervention

作　　者：王桢颜 郇建立[2] WANG Zhenyan;HUAN Jianli(The Chinese University of Hong Kong,Hong Kong SAR 999077,China;University of Science and Technology Beijing,Beijing 100083,China)

机构地区：[1]香港中文大学,999077 [2]北京科技大学,100083

出　　处：《重庆医学》2020年第14期2415-2417,共3页Chongqing medicine

摘　　要：目的分析罕见病患者家庭的压力,探讨有效化解罕见病患者家庭压力的社会工作介入路径。方法2019年3-5月通过雪球抽样与深度抽样选出16组患有进行性肌营养不良患者家庭并对其进行焦点小组访谈及深度访谈。结果罕见病患者家庭面临的压力主要来自疾病无法治愈甚至难以治疗、家庭经济负担重、婚姻关系瓦解、缺乏替代性照顾及照顾者身心负担重等方面。结论社会工作介入可以有效帮助罕见病患者家庭化解来自多方面的压力,并促进家庭健康发展。Objective To analyze the family pressure of patients with rare diseases,and explore social work intervention paths to effectively resolve family pressure of patients with rare diseases.Methods Focus group interviews and in-depth interviews were conducted on 16 families of patients with Duchenne muscular dystrophy through snowball sampling and intensity sampling from March 2019 to May 2019.Results The pressures faced by families of patients with rare diseases mainly come from incurable diseases,heavy financial burden of the family,dissolution of marriage relationships,lack of alternative care,and heavy physical and mental load.Conclusion Social work intervention can effectively help families of patients with rare diseases to relieve stress from many aspects and promote the healthy development of families.

关 键 词：罕见病 家庭系统模型 社会工作 肌营养不良 杜氏 

分 类 号：C916[经济管理] R746.2[社会学]