Parents' Reactions to the Diagnosis of Duchenne Muscular Dystrophy: Associations Between Resolution, Family Functioning, and Child Behavior Problems

The Journal of Nursing Research : JNR
Roberto BaioccoSalvatore Ioverno

Abstract

Duchenne muscular dystrophy (DMD) is the most frequent inherited form of muscular dystrophy during childhood. DMD is a severe and progressive disease. Children initially have no symptoms, but the diagnosis is often delayed until the child is about 5 years old. Although few studies have addressed parent reactions to DMD, parental reactions to other serious childhood conditions have been documented. This study aims to understand the resolution styles that parents use in the context of their children with DMD. Data were collected on 39 parents residing in central Italy, comprising 23 mothers and 16 fathers of children with DMD of a mean age of 12 years. The participants attended a single assessment session lasting 60-80 minutes in which they were interviewed and completed the questionnaire. The participants completed the Reaction to Diagnosis Interview, which is composed of five open-ended questions about parents' memories, thoughts, and feelings about their child's diagnosis. The interviews were videotaped, transcribed, and coded. The Reaction to Diagnosis Interview classifies parents into two main classifications: "resolved" and "unresolved." In addition, the participants responded to questions about their perceptions of family ...Continue Reading

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