Gagliardi B A
Orthop Nurs. 1991 Sep-Oct;10(5):41-9. doi: 10.1097/00006416-199109000-00009.
To understand the experiences of families having a child with Duchenne muscular dystrophy, the investigator studied three families for 10 weeks with a follow-up at 1 year. Six themes recurred in the common experiences in the families: the erosion of hope for normalcy; society's confirmation of the impossibility of normalcy; the dynamics of the family; a smaller world; letting go or hanging on; and things must change. This article illustrates these six themes, compares them to Roy's Adaptation Model, and discusses nursing interventions.
为了解患有杜氏肌营养不良症患儿家庭的经历，研究者对三个家庭进行了为期10周的研究，并在1年后进行随访。在这些家庭的共同经历中反复出现了六个主题：对正常生活的希望破灭；社会认定正常生活不可能实现；家庭动态；世界变小；放手或坚持；以及情况必须改变。本文阐述了这六个主题，将它们与罗伊适应模式进行比较，并讨论护理干预措施。
