Burden on the caregivers of children and adolescents with autism spectrum disorder: which variables are related?Purpose To evaluate the factors associated with the burden of caregivers of children and adolescents with autism spectrum disorder (ASD), identifying which variables have the greatest impact on their daily lives.
Methods The study evaluated 19 caregivers of children with ASD, aged 2 to 12 years; 18 were boys (94.7%). The diagnosis was made by a multidisciplinary team, and the participants were under the care of a pediatric neurologist. The variables collected included the child's age and sex, comorbidities (intellectual disability, attention-deficit/hyperactivity disorder, and so forth), current complaints, type of ongoing intervention, score on the Childhood Autism Rating Scale (CARS), caregiver age, number of children, and family income. Caregiver burden was assessed using the Zarit Burden Interview. Statistical analysis used linear regression with a stepwise selection method to identify the factors significantly associated with burden.
Results only the CARS score was significantly associated with caregiver burden (p = 0.0077), indicating that higher levels of impairment in ASD are related to greater burden. The patients’ age and sex, comorbidities, current complaints, intervention at the time of assessment, and socioeconomic level were not significant.
Conclusion The severity of ASD symptoms, reflected by the CARS score, was the main factor associated with caregiver burden. Other aspects, such as age, comorbidities, and socioeconomic level, may also exert influence, as described in the literature, but were not statistically significantly associated in this study.
Keywords:
Autism spectrum disorder; Caregiver burden; Stress psychological; Comorbidity; Caregivers