The impact of Duchenne muscular dystrophy on families.
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.
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Gagliardi
D000223:Adaptation, Psychological; D000328:Adult; D002648:Child; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D016294:Models, Nursing; D009136:Muscular Dystrophies / Q000451:nursing / Q000523:psychology*; D015404:Nursing Methodology Research