Research Article

Diagnosis of Duchenne muscular dystrophy: experiences of parents of sufferers.

Br Med J (Clin Res Ed) 1983; 286 doi: http://dx.doi.org/10.1136/bmj.286.6366.700 (Published 26 February 1983) Cite this as: Br Med J (Clin Res Ed) 1983;286:700
  1. M A Firth

    Abstract

    Sixty nine parents of boys suffering from Duchenne muscular dystrophy were interviewed at home. The interview explored the parents' experiences at the time of their son's diagnosis. Many families had experienced distressing delays (average 2.5 years) between the time they first became aware of symptoms and the time of the diagnosis. On only 18 occasions were both parents told of the diagnosis together. One third of the parents were "not satisfied" with the way the diagnosis had been communicated. Parents want to know as soon as possible if there is something wrong with their child. They should be told the diagnosis together and in private. Full information should be given and a series of contacts should be arranged.