Moretto Gabriela, Ishihara Mariana, Ribeiro Marcos, Caetano Sheila Cavalcante, Perissinoto Jacy, Tamanaha Ana Carina
Departamento de Fonoaudiologia, Universidade Federal de São Paulo - UNIFESP - São Paulo (SP), Brasil.
Departamento de Psiquiatria, Universidade Federal de São Paulo - UNIFESP - São Paulo (SP), Brasil.
Codas. 2020 Dec 9;32(6):e20190170. doi: 10.1590/2317-1782/20202019170. eCollection 2020.
According to the World Health Organization, quality of life is defined as the perception an individual has on his/her position within the cultural context and the system of values in which he/she is contained. This perception is intrinsically related to the objectives, expectations, patterns, and concerns of such an individual. We know that when a member of a family is assailed by an ailment, the quality of life of all of those who surround him/her suffer a strong impact. One of the great concerns of the families regarding the development of a child with Autism Spectrum Disorder (ASD) is the lack or impairment of the child's speech. Thus, the objective of this study was to analyze the interference of the communicative means of children with ASD upon the quality of life of their mothers.
This was a transversal study. The sample was obtained from 41 mothers of children diagnosed with ASD by a multi-disciplinary team: the mothers were divided into two groups: 20 mothers of non-verbal children-GASD-NV; and 21 mothers of verbal children-GASD. We applied the WHOQOL-Bref questionnaire to score and analyze the quality of life of these mothers.
There was no significant difference in the maternal perception related to the domains that reflected the quality of life which we compared between these two groups of mothers. In both groups, we observed high indexes of dissatisfaction.
We verified that the quality of life of the mothers of children with ASD was affected regardless of the communicative means used by the child.
根据世界卫生组织的定义，生活质量是指个人对其在所处文化背景和价值体系中的位置的认知。这种认知与该个人的目标、期望、模式和关注点有着内在联系。我们知道，当一个家庭成员患病时，其周围所有人的生活质量都会受到强烈影响。家庭对患有自闭症谱系障碍（ASD）儿童成长的一大担忧是孩子语言能力的缺失或受损。因此，本研究的目的是分析患有ASD儿童的沟通方式对其母亲生活质量的影响。
这是一项横断面研究。样本来自一个多学科团队诊断为患有ASD儿童的41位母亲：这些母亲被分为两组：20位非言语儿童的母亲——GASD-NV组；以及21位言语儿童的母亲——GASD组。我们应用世界卫生组织生活质量简表问卷对这些母亲的生活质量进行评分和分析。
在这两组母亲中，我们比较的反映生活质量的各个领域的母亲认知方面没有显著差异。在两组中，我们都观察到了较高的不满指数。
我们证实，无论孩子使用何种沟通方式，患有ASD儿童的母亲的生活质量都会受到影响。
