Parents' perspectives on coping with Duchenne muscular dystrophy

Abstract

Background: The author, who has a grown son with Duchenne Muscular Dystrophy (DMD), has personally experienced a lack of available information for parents about coping with DMD. Therefore, as a longtime personal goal, she developed this study to address that lack of information.

Methods: Fifteen semi-structured interviews were conducted with 23 parents (n = 7 with both parents; n = 1 with two sisters; n = 6 with mothers only; n = 1 with father only). The purpose of the interviews was to examine the strategies parents use to cope when their sons have DMD. The interviews were conducted in 12 states, taped and transcribed.

Results: Grounded theory analysis of the interview data indicated the willingness of these parents to share information to empower others like themselves.

Conclusions: Parents want to be heard and valued as experts on DMD by medical and other professionals who interact with their sons. In addition, they want to proactively participate in their sons' lives and to encourage other parents to do the same.