Calidad de vida y funcionamiento ejecutivo en cuidadores primarios de niños y adolescentes con discapacidad

Abstract

The birth of a child with a disability implies a change in the family system which affects the perception of quality of life, as caregivers can become more resilient or see the situation as devastating (Dambi et al., 2015; Fairthorne et al., 2015; Gilson et al., 2018; Whitmore, 2016). That is why the presence of several psychological, family, social and couple problems has been evidenced (Aras et al., 2014; Arias Reyes & Muñoz-Quezada, 2019); given this, there is the influence of a mechanism that allows situations to be mediated and is known as executive functioning (Frye & Shapiro, 2020). However, the relation between these variables has not been studied in this population. Given the above, this study sought describe the quality of life and performance of executive functions of this population; analyze the relationship between quality of life and performance of executive functions and identify the characteristics of caregivers from profiles identified by a cluster analysis. These objectives respond to the following hypotheses: 1. It is expected that there is a relationship between perceived quality of life and executive functioning performance and, 2. Caregivers are expected to present different profiles from a cluster analysis.

The population in this work was 211 caregivers who assisted to institutions that work with children or adolescent with any disability from the city of Cuenca (Ecuador), who wanted to participate voluntarily. 14.7 % were men and 85.3 % were women. The inclusion criteria were caregivers who want to participate in the study, who can read and write, and are parents, grandparents or uncles who take care of the child or adolescent. Those with a mental disorder and formal caregivers were excluded. For the measurement of these variables, the instruments applied were the BRIEF-A to determine the executive functioning and the WHOQOL-bref to know the quality of life. For the data analysis, SPSS version 25.0 statistical package was used for information processing. Initially, a general description of the variables is made, expressing the results by means of measures of central tendency and dispersion. The assumption of normality was verified with the Kolmogorov Smirnov test that revealed a non-normal behavior, so to start the correlation study the rho de Spearman correlation coefficient was applied. In the same way, a model that involves all the dimensions evaluated for the quality of life and executive function was estimated. Subsequently, possible general parental profiles were established with an analysis Cluster of K means and the demographic characterization of each one was carried out using the chi-square statistic with the Crammer V effect size report. Finally, the effect size of the main characteristics according to the ANCOVA model is reported. The results showed that psychological health was the predominant dimension in QoL. Regarding EF, the function with worse performance was emotional control. Likewise, global executive functions and the perception of quality of life are found as covariates and not as cause effect; also, there are small relationships between QoL (psychological health and environment) and EF (flexibility, working memory, follow-up to tasks and plan/organization). Finally, two profiles were identified, conflict and harmony, whose belonging is associated with the sex and age of the caregiver. It is concluded that EF are related to QoL in a small way, so, it is important to analyze another psychosocial variables that can be related.