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

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Abstract

Background:

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.

Purpose:

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.

Methods:

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 functioning and about the behavioral problems of their children. A hierarchical multiple regression analysis was used to examine the role of child characteristics, disease severity, resolution classification (yes/no), and family variables as predictors of child behavior problems.

Results:

The proportion of the resolved cases found in this study (41%) was lower than the mean proportion of resolved cases (60%) found in previous studies. Within the resolved category, “thinking oriented” was the most prevalent subcategory. Resolved participants reported significantly higher scores for family functioning and family satisfaction than unresolved participants. No differences were found between the groups in terms of perceptions of family communication. The hierarchical multiple regression analysis showed that a lower level of family functioning was the strongest predictor of child behavior problems. Having a higher level of disease severity and being unresolved were also identified as predictors of child behavior problems.

Conclusions/Implications for Practice:

Results highlight the relevance of parent resolution in the adjustment process of children. The findings of this study may assist professionals in the medical field to focus on family variables and the parent process of diagnosis resolution as the primary goals in the prevention of child behavior problems.

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