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

Jessica A Kaczorowski, Taylor F Smith, Jacklyn Dahlquist

    Journal of Pediatric Health Care : Official Publication of National Association of Pediatric Nurse Associates & Practitioners
    |November 4, 2025
    PubMed

    Insights

    Parents of youth with Neurofibromatosis type 1 (NF1) experience significant stress. Long-term uncertainty about the condition

    Area of Science:

    • Neuroscience
    • Genetics
    • Psychology

    Background:

    • Neurofibromatosis type 1 (NF1) is a genetic disorder with variable severity.
    • Parents of children with NF1 face unique challenges impacting their well-being.
    • Understanding factors contributing to parental stress is crucial for effective support.

    Purpose of the Study:

    • To examine factors influencing parenting stress and internalizing symptoms in parents of youth with NF1.
    • To investigate the mediating role of long-term uncertainty in the relationship between NF1 severity and parental outcomes.

    Main Methods:

    • Cross-sectional study design.
    • 172 parents of youth with NF1 completed surveys.
    • Assessed parenting stress, coping, internalizing symptoms, and child NF1 factors.

    Main Results:

    • Child behavior problems, learning difficulties, and access to NF1 specialists correlated with increased parenting stress and parent internalizing symptoms.
    • NF1 severity was linked to higher parenting stress.
    • Long-term uncertainty partially mediated the association between NF1 factors and parental outcomes.

    Conclusions:

    • Long-term uncertainty regarding NF1 prognosis may explain the link between NF1 severity and parental stress.
    • Support interventions should focus on helping parents manage uncertainty and adopt active coping strategies.
    • Improving parental adjustment can enhance outcomes for families affected by NF1.
    Abstract

    Keywords:
    NF1anxietycoping skillsparentingstress

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