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Diagnosis of Duchenne muscular dystrophy: parents’experiences and satisfaction
Author(s) -
Green J M,
Murton F E
Publication year - 1996
Publication title -
child: care, health and development
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.832
H-Index - 82
eISSN - 1365-2214
pISSN - 0305-1862
DOI - 10.1111/j.1365-2214.1996.tb00779.x
Subject(s) - duchenne muscular dystrophy , feeling , empathy , sentence , psychology , medicine , pediatrics , developmental psychology , clinical psychology , social psychology , linguistics , philosophy
Summary The purpose of the study was to investigate parents' experiences of diagnosis of Duchenne muscular dystrophy. Data were collected retrospectively by postal questionnaire from the parents of 158 boys diagnosed at different times and locations and, for some, after lengthy periods of uncertainty. Most parents knew nothing about Duchenne before being given the diagnosis. There was considerable variation in parents' experiences but the only independent predictors of parents' satisfaction with how the diagnosis was given were obtaining the information that they wanted and feeling that they had understood and remembered it. What distinguishes Duchenne from, say, Down syndrome is that doctors are having to deliver a death sentence on a child. Our data show that this can be done in a way that is satisfactory to parents. What is required is empathy and sensitivity to parents' informational and emotional needs.