Relación entre sobrecarga y calidad de vida relacionada a la salud en cuidadores primarios de niños, niñas y adolescentes con trastorno del espectro autista en el Ecuador, en el periodo 2022

Abstract

The autistic person presents variable heterogeneous symptoms throughout life. Thus, the role of a primary caregiver who supports symptom control is essential. This condition can generate the presence of overload, which affects physical and mental health, and can generate stress, anxiety and/or depression in the caregiver. In such a way that the quality of life related to health (HRQoL) is also disrupted. This study was framed within the project "Influence of the ethnic identity of caregivers in coping with behavioral difficulties in minors with ASD and in children with intellectual disabilities", from which a reference database was extracted from a sample of 91 primary caregivers of ASD patients. Thus, this research increased the relationship between overload and HRQoL in primary caregivers of children and adolescents diagnosed with ASD in Ecuador. A quantitative, cross-sectional approach and correlational scope was used. The instruments of interest were: the Zarit Caregiver Burden Scale, the EuroQol-5D instrument and a sociodemographic file. According to the data analysis, the levels of overload in the participants were: no overload (42.85%), light overload (25.27%), intense overload (31.86%). The health dimensions most affected were anxiety and depression. There is significantly significant between the sociodemographic variables: educational level and religious practice with respect to the overload variable, but none with HRQoL. Finally, it was delimited that the presence of overload negatively affects HRQoL in primary caregivers of infants with ASD. An investigative extension is suggested that includes a larger population number and other associated variables.