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Caregiver burden in children with medical complexity: an approach based on the identification of associated factors

Fernando Sarin da Mota E Albuquerque1, Danton Matheus de Souza2, Lidice Valeriana Oliveira Diop1

  • 1Universidade de São Paulo, Faculdade de Medicina, São Paulo, SP, Brazil.

Revista Paulista De Pediatria : Orgao Oficial Da Sociedade De Pediatria De Sao Paulo
|June 24, 2026
PubMed

Insights

Caregiver burden in children with medical complexity is linked to medication needs and sleep. Daily care support reduces this burden, highlighting modifiable factors for better management.

Area of Science:

  • Pediatrics
  • Healthcare Management
  • Family Medicine

Background:

  • Children with medical complexity (CMC) present unique caregiving challenges.
  • Caregiver burden significantly impacts family well-being and healthcare utilization.
  • Identifying factors influencing caregiver burden is crucial for effective support.

Purpose of the Study:

  • To identify factors associated with increased caregiver burden in CMC.
  • To inform management strategies for families of CMC.

Main Methods:

  • Cross-sectional study in a specialized service for complex chronic conditions.
  • Zarit Burden Interview used to assess subjective caregiver burden (mild, moderate, severe).
  • Bivariate and multivariable Poisson regression analyses performed.

Main Results:

  • 173 caregivers interviewed; 31.2% reported severe burden.
  • Polypharmacy associated with higher burden (PR=1.48).
  • Daily care support (PR=0.79) and adequate sleep (PR=0.78) associated with lower burden.

Conclusions:

  • Care-related needs, including polypharmacy, daily support, and sleep, influence caregiver burden.
  • Findings support a family-centered approach for clinical follow-up of CMC.
  • Modifiable factors offer targets for intervention to alleviate caregiver burden.
Abstract

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