Resilience in children diagnosed with a chronic neuromuscular disorder.

ABSTRACT

OBJECTIVE: To examine what contributes to resiliency in children living with Duchenne muscular dystrophy (DMD), a chronic, progressive neuromuscular disorder that also influences cognitive ability. The authors hypothesized that family and social support will moderate the effects of individual symptoms of illness severity and influence positive adjustment in boys with DMD. METHOD: One hundred forty-six boys with DMD were included. Child adjustment, as determined by parent ratings of their son's behavior using the Total Behavior score from the Child Behavior Checklist (CBCL), was examined as an outcome measure. The contributions of individual variables (including age [which serves also as a proxy for degree of physical disability], wheelchair use, and estimated verbal IQ), family variables (the Parental Distress score from the Parent Stress Index), and social environment variables (the Social Competence score from the CBCL) on child adjustment were examined in a linear regression analysis. RESULTS: Both family and social environment variables significantly contributed to the variance in the CBCL Total Behavior score. In contrast, individual factors that are related to illness severity (age, degree of physical involvement, and estimated verbal IQ) were not associated with child adjustment. CONCLUSION: Increased children's social networks and decreased parents' stress levels positively contributed to good child adjustment, whereas degree of individual clinical severity did not. Thus, emphasis on providing opportunities for friendships and social support and on parents' adjustment will aid in children's resilience, ensuring they can live well, even while living with the significant burdens associated with DMD.