Parental Adjustment to Child Neurofibromatosis 1: The Role of Long-Term Uncertainty.

This study examined factors that influence parenting stress and internalizing symptoms within parents of youth with NF1. Youth NF1 severity was hypothesized to predict parenting stress and parent internalizing symptoms, and parent long-term uncertainty would mediate these relationships. A total of 172 parents of youth with NF1 completed surveys on parenting stress, coping, internalizing symptoms, and child NF1 factors. A cross-sectional design was used. Child behavior problems, learning difficulties, and difficulty contacting NF1 specialists were associated with increased parenting stress and parent internalizing symptoms. Child NF1 severity was associated with increased parenting stress. Long-term uncertainty partially mediated the relationships between many NF1 factors and parent outcomes. Among parents of youth with NF1, long-term uncertainty of NF1 prognosis may explain why NF1 severity leads to increased parenting stress and internalizing symptoms. NF1 support should help parents adjust to uncertainty and engage in active coping to improve outcomes.