Eapen Valsamma, Karlov Lisa, John James Rufus, Beneytez Carmen, Grimes Poppy Z, Kang Ying Qi, Mardare Ileana, Minca Dana Galieta, Voicu Laura, Malek Khasnur Abd, Ramkumar Aishworiya, Stefanik Krisztina, Gyori Miklos, Volgyesi-Molnar Marta
Discipline of Psychiatry, Faculty of Medicine, University of New South Wales, Sydney, NSW, Australia.
Equipo Especifico Alteraciones Graves del Desarrollo, Consejería de Educación de Madrid, Madrid, Spain.
Front Psychol. 2023 Feb 23;14:1022094. doi: 10.3389/fpsyg.2023.1022094. eCollection 2023.
The concepts of health, illness, and disability as well as the perceptions of autism and quality of life (QoL) vary greatly across cultures and across time. This study sought to explore the interplay of culture on QoL and impact on parents caring for autistic children.
We used a transcultural dataset from seven countries (Australia, Hungary, Malaysia, Romania, Singapore, Spain, and the United Kingdom) with participating parents/carers reporting on the Quality of Life in Autism (QoLA) questionnaire. The QoLA questionnaire is a validated measure of QoL for parents of autistic children, with Part A subscale measuring parental QoL and part B subscale assessing the parental impact of the child's autism spectrum disorder (ASD) symptoms or features. We used the Quade's ranked analysis of covariance to determine significant differences between the countries in relation to QoLA Part A and Part B scores while adjusting for baseline differences using covariates such as parents' gender, child's age, and gender. Additionally, a analysis with Bonferroni correction was also conducted to examine multiple pairwise comparisons.
We found that while the effect of features of ASD (Part B subscale) stayed strongly comparable between cultures, the self-reported parental QoL was most likely determined by different aspects of culture in different countries. It is concluded that while the ASD symptoms or features appear to affect parents in the same way across different countries, the parental QoL may be a culturally informed construct.
健康、疾病和残疾的概念,以及对自闭症和生活质量(QoL)的认知在不同文化和不同时期差异很大。本研究旨在探讨文化对生活质量的相互作用以及对照顾自闭症儿童的父母的影响。
我们使用了来自七个国家(澳大利亚、匈牙利、马来西亚、罗马尼亚、新加坡、西班牙和英国)的跨文化数据集,参与的父母/照顾者报告了自闭症生活质量(QoLA)问卷。QoLA问卷是一种经过验证的自闭症儿童父母生活质量测量工具,A部分子量表测量父母的生活质量,B部分子量表评估孩子自闭症谱系障碍(ASD)症状或特征对父母的影响。我们使用Quade的协方差排序分析来确定各国在QoLA A部分和B部分得分方面的显著差异,同时使用父母性别、孩子年龄和性别等协变量调整基线差异。此外,还进行了带有Bonferroni校正的分析,以检验多个成对比较。
我们发现,虽然ASD特征(B部分子量表)的影响在不同文化之间保持高度可比,但自我报告的父母生活质量很可能由不同国家文化的不同方面决定。得出的结论是,虽然ASD症状或特征在不同国家似乎以相同方式影响父母,但父母的生活质量可能是一个受文化影响的概念。