PMID: 6402212Feb 26, 1983Paper

Diagnosis of Duchenne muscular dystrophy: experiences of parents of sufferers

British Medical Journal
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.

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Citations

Jan 24, 2013·European Journal of Human Genetics : EJHG·Stuart J MoatLouise Hartley
Mar 21, 2000·Journal of Paediatrics and Child Health·M J Hasnat, P Graves
Mar 21, 2000·Journal of Paediatrics and Child Health·M J Hasnat, P Graves
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Jun 18, 1983·British Medical Journal·M A Firth, E J Wilkinson
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Oct 17, 2016·Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners·Roxanna M Bendixen, Amy Houtrow
Oct 27, 2016·Ciência & saúde coletiva·Silvana Aparecida de Lucca, Eucia Beatriz Lopes Petean
Jan 8, 2015·Journal of Child Neurology·Haruo FujinoOsamu Imura
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Jan 30, 2015·European Journal of Human Genetics : EJHG·Siaw H WongSylvia A Metcalfe
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Jun 10, 2017·Tidsskrift for den Norske lægeforening : tidsskrift for praktisk medicin, ny række·Torun Marie Vatne

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