Revista paulista de pediatria : orgao oficial da Sociedade de Pediatria de Sao Paulo · 2026
Caregiver burden in children with medical complexity: an approach based on the identification of associated factors.
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Albuquerque Fernando Sarin da Mota E, Souza Danton Matheus de, Diop Lidice Valeriana Oliveira, Ferrer Ana Paula Scoleze
Аннотация
OBJECTIVE: The aim of this study was to identify factors associated with increased caregiver burden of children with medical complexity and to guide management strategies.
METHODS: This cross-sectional study was conducted in a specialized service for patients with complex chronic conditions. Caregiver burden was assessed using the Zarit Burden Interview, which measures subjective burden, encompassing emotional, social, and personal impacts associated with caregiving, and is categorized as mild, moderate, or severe according to the total score. Bivariate analyses used chi-square tests, followed by multivariable Poisson regression with robust variance estimation, with results expressed as prevalence ratios (PRs) and 95% confidence intervals; p<0.05 was considered significant.
RESULTS: A total of 173 caregivers were interviewed, predominantly mothers (88.4%), with a mean age of 38.8 years, from low-income households. Among the patients, 28.7% had cerebral palsy, 59.4% used assistive devices, and 57.2% required help with daily life activities. A severe burden score was reported by 31.2%. Polypharmacy was associated with a higher prevalence of moderateto-severe caregiver burden (PR=1.48; p=0.015), whereas daily care support (PR=0.79; p=0.039) and adequate sleep (PR=0.78; p=0.027) were associated with a lower prevalence of the outcome.
CONCLUSIONS: Care-related needs, particularly polypharmacy, daily care support, and sleep quality, were associated with caregiver burden level. These findings highlight potentially modifiable factors and support the integration of a family-centered approach in the clinical follow-up of children and adolescents with medical complexity.
METHODS: This cross-sectional study was conducted in a specialized service for patients with complex chronic conditions. Caregiver burden was assessed using the Zarit Burden Interview, which measures subjective burden, encompassing emotional, social, and personal impacts associated with caregiving, and is categorized as mild, moderate, or severe according to the total score. Bivariate analyses used chi-square tests, followed by multivariable Poisson regression with robust variance estimation, with results expressed as prevalence ratios (PRs) and 95% confidence intervals; p<0.05 was considered significant.
RESULTS: A total of 173 caregivers were interviewed, predominantly mothers (88.4%), with a mean age of 38.8 years, from low-income households. Among the patients, 28.7% had cerebral palsy, 59.4% used assistive devices, and 57.2% required help with daily life activities. A severe burden score was reported by 31.2%. Polypharmacy was associated with a higher prevalence of moderateto-severe caregiver burden (PR=1.48; p=0.015), whereas daily care support (PR=0.79; p=0.039) and adequate sleep (PR=0.78; p=0.027) were associated with a lower prevalence of the outcome.
CONCLUSIONS: Care-related needs, particularly polypharmacy, daily care support, and sleep quality, were associated with caregiver burden level. These findings highlight potentially modifiable factors and support the integration of a family-centered approach in the clinical follow-up of children and adolescents with medical complexity.