PARENTING, QUALITY OF LIFE, AND BURDEN IN CAREGIVERS OF CHILDREN AND ADOLESCENTS WITH DISABILITIES

Abstract

The caregiving process for individuals with disabilities involves a comprehensive understanding of the multifaceted factors that impact the psychological well-being of both caregivers and care recipients, including their subjective appraisal of quality of life and the extent of caregiver burden experienced. The objective of this study was to determine the relationship between caregiving, quality of life, and caregiver burden among caregivers of children and adolescents with disabilities in the city of Cuenca, Ecuador, and to determine parental and quality-of-life profiles according to the type of disability and the presence of a support person for care. The study employed a non-experimental quantitative empirical design with a descriptive observational strategy. A total of 104 caregivers of children and adolescents with intellectual disabilities, autism, and cerebral palsy participated in the study. The instruments used were the EMBU-P restructured for children and adolescents with disabilities, the WHOQOL-BREF, and the Zarit caregiver burden scale. Data analysis was performed using non-parametric tests. The results showed that there are relationships between the variables in different intensities and directions. The parental profile was explained by caregiver burden and caregiver characteristics, but not by perception of quality of life. It was concluded that quality of life is related to emotional warmth and caregiver burden, and parental profiles vary according to the type of disability. Caregivers of individuals with intellectual disabilities exhibited greater control, while caregivers of individuals with autism showed better quality of life in terms of social relationships and environment.