Qualidade de vida dos cuidadores de crianças com transtorno do espectro autista que fazem acompanhamento na APAE de Parnaíba - Piaui

Abstract

The general objective of this research is to evaluate the quality of life of caregivers of children with Autism Spectrum Disorder. This is a descriptive cross-sectional study with a quantitative approach, involving caregivers of children between 2 and 12 years of age, who were diagnosed with Autism Spectrum Disorder and who are monitored at the Associação de Pais e Amigos dos Excepcionais de Parnaíba – APAE. The World Health Organization Quality of Life questionnaire (the WHOQOL-BREF) was used as an assessment tool, alongside the Zarit Caregiver Burden Scale. Both instruments are validated in Brazil. Regarding the domain means, all presented means indicating regular quality of life perception. The domain with the lowest mean was the environment domain (mean 3.07), and the one with the best mean was the psychological domain (3.46). Additionally, the results indicated that among the interviewees, 31.37% experience mild burden, while 35.29% experience moderate burden, and 33.33% experience severe burden. The aspects of caregivers' quality of life related to the physical, psychological, social relationships, and environment domains are compromised. As evidenced in our study, the most affected domain was the environment. In addition, the majority of caregivers experience a burden ranging from moderate to severe. These results may be correlated with factors such as a shortage of free time, highlighting the need to direct specific preventive and support measures to this population group.