Caregivers' Burden of School-Aged Children with Neurodevelopmental Disorders: Implications for Family-Centred Care

Giulia Purpura1, Luca Tagliabue2, Stefania Petri3

  • 1School of Medicine and Surgery, University of Milano Bicocca, 20900 Monza, Italy.

Brain Sciences
|July 2, 2021
PubMed

Insights

Caregiver burden is high for parents of children with neurodevelopmental disorders, particularly Autism Spectrum Disorder and Intellectual Disability. Burden increases with more rehabilitation hours and decreases as children age.

Area of Science:

  • Neurodevelopmental Disorders
  • Caregiver Psychology
  • Rehabilitation Science

Background:

  • Caregivers of children with neurodevelopmental disorders face significant psychosocial challenges.
  • Predisposing factors for caregiver burden are not well-established in existing literature.

Purpose of the Study:

  • To compare caregiver burden levels across different neurodevelopmental disorders in an Italian sample.
  • To identify clinical and sociodemographic factors associated with caregiver burden.

Main Methods:

  • 105 primary caregivers of school-aged children with neurodevelopmental disorders participated.
  • Participants completed online questionnaires: General Questionnaire, Caregiver Burden Inventory, and Zarit Caregiver Burden Scale.

Main Results:

  • Approximately 50% of caregivers reported moderate to high stress levels.
  • Caregivers of children with Autism Spectrum Disorder and Intellectual Disability experienced greater burden compared to other groups.
  • Caregiver burden correlated negatively with child's age and positively with weekly rehabilitation hours.

Conclusions:

  • Caregiver burden severity is influenced by the specific type of neurodevelopmental disorder.
  • An ecological, family-centered approach is crucial for supporting the well-being of children with neurodevelopmental disorders and their families.

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