杜氏肌营养不良(简称DMD),是一种随着年龄增长全身肌肉呈进行性消耗和运动功能逐渐减退的致死性疾病。本研究通过质性研究方法探索DMD儿童父母在养育DMD孩子过程中面临的压力及需求,建立DMD家长支持团体,提供心理、教育、亲子、康复等主题的支持团体活动,从而为DMD儿童父母提供情感性、信息性、工具性等社会支持,构建DMD儿童家庭的社会支持网路。 Duchenne muscular dystrophy (referred to as DMD), is a kind of fatal disease that progressive depletion of body muscles with age and progressive decline in motor function. This study explores the pressures and needs of parents of DMD children in raising children with DMD through qualitative research methods, establishes a DMD parent support group and provides support groups activities such as psychology, education, parenting and rehabilitation so as to provide DMD children and parents Emotional, informative, instrumental and other social support to build DMD children’s family social support network.