Gagliardi B A
Appl Nurs Res. 1991 Nov;4(4):159-64. doi: 10.1016/s0897-1897(05)80090-4.
An ethnographic inquiry was conducted to better understand the experience of families living with a child with Duchenne muscular dystrophy. Participant-observation and in-depth interviews were used to collect data. Six themes emerged as primary descriptors of the experience: (a) Disillusionment: The Erosion of the Hope for Normalcy; (b) Society Confirms the Impossibility of Normalcy; (c) Dynamics of the Family: Who's Disabled Anyway?; (d) A Smaller World; (e) Letting Go or Hanging On; and (f) Things Must Change. Implications of these themes are discussed in terms of need for counseling and support services for families, in-service education for health professionals, and activities for children diagnosed with Duchenne muscular dystrophy.
开展了一项人种学调查，以更好地了解患有杜氏肌营养不良症儿童的家庭的经历。采用参与观察和深度访谈来收集数据。出现了六个主题，作为该经历的主要描述：(a) 幻想破灭：对正常生活的希望破灭；(b) 社会证实正常生活不可能实现；(c) 家庭动态：到底谁是残疾人？；(d) 更小的世界；(e) 放手还是坚持；以及(f) 情况必须改变。从为家庭提供咨询和支持服务的需求、为卫生专业人员提供在职教育以及为被诊断患有杜氏肌营养不良症的儿童开展活动等方面讨论了这些主题的影响。
