Calidad de vida y sobrecarga en cuidadores de escolares con discapacidad intelectual / Quality of life and overload in caregivers of school children with intellectual disabilities

RESUMEN

Existe escasa evidencia sobre calidad de vida y sobrecarga emocional de cuidadores de estudiantes con discapacidad intelectual. Las investigaciones de los últimos años abordan esta problemática desde la persona adulta con discapacidad grave, ya sea física y neurológica, por ende existe la necesidad de identificar la calidad de vida y nivel de sobrecarga del cuidador a cargo de un estudiante con discapacidad intelectual o retos múltiples. El objetivo de este estudio consistió en evaluar la sobrecarga y calidad de vida de cuidadores de escolares con discapacidad intelectual y retos múltiples de Curicó, Chile. Se realizó un diseño transversal, con una muestra de 137 cuidadores de escolares con discapacidad intelectual leve, moderada y discapacidades múltiples de escuelas municipales, y se aplicaron el Cuestionario de Sobrecarga del Cuidador de Zarit y el Cuestionario de Salud de Calidad de Vida SF36. Los resultados mostraron que el mayor número de escolares se encontró en el nivel de discapacidad intelectual leve con un 62.9%, luego un 19.3% para retos múltiples y un 17.9% para discapacidad moderada. Los cuidadores de niños con discapacidades múltiples presentaron un mayor nivel de sobrecarga emocional y menor calidad de vida en la función, dolor corporal y salud general. Se concluye que es necesario el desarrollo de propuestas, tanto en el ámbito de salud como de educación, que integre a la familia en el proceso formativo y que vele por la calidad de vida de los cuidadores principales de estudiantes con discapacidades, con el fin de fortalecer los procesos de inclusión social y educativa de los escolares.

ABSTRACT

There is little evidence on the quality of life and emotional overload of caregivers of students with intellectual disabilities. Research of recent years address this problem from the adult with severe disability, whether physical or neurological, therefore there is a need to identify the quality of life and overburden level of the caregiver in charge of a student with intellectual disability or multiple challenges. The objective was to evaluate the overload and quality of life of caregivers of students with intellectual and multiple disabilities of Curicó, Chile. We did across-sectional design, with a sample of 137 caregivers of school children with mild, moderate intellectual disability and multiple disabilities of municipal schools, we applied the Zarit Burden Interview scale for caregivers and the SF36 Health Survey. The average age of caregivers of people with disabilities (n = 140) was 40 years(SD = 12), with a minimum age of 18 and a maximum of 66 years. Regarding the marital status of the caregivers (Table 1), 48.6% corresponded to married, 23.6% single, 13.6% cohabiting, 4.3% widowed and 10% separated. With regard to kinship, 73.6% corresponds to the mother of the scholar with a disability. A greater percentage of the caregivers attended the complete secondary education (32.1%), followed by the basic complete with 20.0%, and without studies with 1.4%. The majority of the respondents were primary caregivers of children in the first cycle of education (56.0%) and 72.0% reported living with 4 or more people in the home. The results showed that the highest number of school children was found at the level of mild intellectual disability with 62.9% following multiple challenges (19.3%) and moderate disability with 17.9%. The 48.1% of the total caregivers of children with multiple challenges presented an intense level of overload. This relationship is statistically significant (χ²= 12.4, p = .015) which indicates that caregivers of students with multiple disabilities present a greater burden. Caregivers of children with multiple disabilities presented a higher level of emotional overload and lower quality of life in the body pain function. The final model of multiple linear regression for the dependent variable overload of the caregiver that presents the best goodness of fit presented an association between multiple challenges and greater overload of the caregiver adjusted by the kinship of the caregiver with the scholar. The data indicate that there is a difference of up to 5.8 points in the overload among caregivers of students with mild, moderate intellectual disability and multiple challenges. We concluded that it is necessary to develop proposals in both health and education that integrates the family in the training process and that ensures the quality of life of the main caregivers of students with disabilities, in order to strengthen the processes of social and educational inclusion of the schoolchildren. At the same time, the results obtained provide key background for future research, in terms of support and information that is required to improve the quality of life of caregivers of students with disabilities, while allowing optimal development for children and thus reduce the level of stress and overload of the family. In the same way, it addresses a paradigm of school inclusion that goes beyond curricular adaptations, allows to propose a comprehensive view among all involved, recognizing that the higher the level of disability, the greater the perception of emotional overload and physical discomfort, being necessary incorporate other support networks for caregivers and their family in general, however, it is considered key that the financing of these activities and intervention be intersectoral, involving entities inthe area of health, education, social-community and work among the most important.