Quality of life and burden of caregivers of children and adolescents with disabilities

AIMS: To evaluate the quality of life (QoL) and burden of primary caregivers of children and young adults (PCCYAs) with and without disabilities. METHODS: A cross-sectional study was carried out with sample composed of 336 PCCYAs with cerebral palsy (CP; n = 84), Down syndrome (DS; n = 84), autism spectrum disorder (ASD; n = 84), and without disabilities (control group: CG n = 84), matched by gender and age. The burden of caregivers was assessed with the Zarit Burden Interview (ZBI), whereas QoL was assessed using the WHOQOL-BREF instrument. RESULTS: QoL and burden of CG presented better results compared to groups with disabilities, with the lowest environmental domain of all study groups (P <.001). The prevalence of burden was moderate for PCCAs of groups with disabilities. There was association between all WHOQOL-BREF and ZBI domains and variables age, schooling, occupation and per capita income (Spearman's correlation coefficient, P <.05). There is a negative impact on WHOQOL-BREF, with an increase in the level of burden of PCCAs with disabilities. CONCLUSION: The majority of PCCYAs were unemployed married mothers, with low schooling and health problems. Older caregivers experience even higher burden and greater impact on QoL.