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Published on: September 19, 2019

Parenting Stress in CHARGE Syndrome and the Relationship with Child Characteristics

Josette Wulffaert, Evert M Scholte, Yvette M Dijkxhoorn

    Journal of Developmental and Physical Disabilities
    |July 10, 2009
    PubMed

    Insights

    Parenting stress is high for children with CHARGE syndrome, particularly when they exhibit behavioral issues like depression or disruptive conduct. Professional support is crucial for families raising children with CHARGE syndrome.

    Area of Science:

    • Pediatrics
    • Developmental Psychology
    • Genetics

    Background:

    • CHARGE syndrome presents unique challenges for families.
    • Parental stress is a significant factor in child development.
    • Understanding the specific stressors associated with CHARGE syndrome is crucial for effective support.

    Purpose of the Study:

    • To investigate parental stress levels in raising children with CHARGE syndrome.
    • To identify associations between parenting stress and child characteristics.
    • To inform the development of targeted family-oriented interventions.

    Main Methods:

    • Utilized the Nijmegen Parenting Stress Index-Short, Developmental Behavior Checklist, and Dutch Vineland Screener 0-12.
    • Assessed 22 children with CHARGE syndrome and their parents.
    • Collected data on child's hearing, vision, speech, and behavioral and adaptive functioning.

    Main Results:

    • 59% of parents reported high parenting stress.
    • Parenting stress positively correlated with child's depression, autism, self-absorbed, and disruptive behaviors.
    • No significant associations found with adaptive functioning, intellectual disability, sensory impairments, gender, or age.

    Conclusions:

    • Raising a child with CHARGE syndrome is inherently stressful, highlighting the need for professional support.
    • Further research is required to identify other influencing factors for improved family interventions.
    • International collaboration is essential to increase statistical power and harmonize research for CHARGE syndrome.

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