The impact of Duchenne muscular dystrophy on families

Abstract

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.