Salleh Noor Shuhada, Tang Li Yoong, Jayanath Subhashini, Lim Abdullah Khatijah
Department of Nursing Science, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
Developmental Pediatrics Unit, Department of Pediatrics, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
J Multidiscip Healthc. 2022 Sep 13;15:2053-2066. doi: 10.2147/JMDH.S376869. eCollection 2022.
Children diagnosed with ASD usually have impaired social functions, exhibit repetitive, stereotyped and self-stimulatory behaviors, which make them prone to be stigmatized by the public. However, stigma not only affects those with stigmatization characteristics such as children with ASD but also tends to include other people related to them including parents. This is called affiliate stigma. However, affiliate stigma is unlikely to occur if public awareness is high. Considering that awareness of ASD is still comparatively low in this region and that, as a review of the literature showed, there have been limited studies on stigma and ASD conducted in South-East Asia, particularly in Malaysia, this study is of great significance, especially in the context of the East and other developing countries. The aim of this study was to explore parents' experiences of caring and perceptions of affiliate stigma, resilience and quality of life (QoL) when caring for a child with ASD.
This paper is part of the sequential explanatory mixed-methods study in which, after a cross-sectional study of 144 parents, a qualitative approach was used to explore parents' experiences of caring and their perceptions of affiliate stigma, resilience, and QoL. Participants were recruited when they were accompanying their children to therapy at two tertiary public hospitals in one of the north-eastern states of Malaysia. Eleven parents of children with ASD aged 2-12 years participated. Qualitative data analysis followed Braun and Clarke's methodology of thematic analysis.
Four themes were identified: the meaning of QoL, ASD and life adjustment, perceived stigma, and resilience.
This is the first Southeast Asian study on parent-perceived affiliate stigma, resilience, and QoL in the context of ASD. These findings can inform healthcare personnel and policymakers into day-to-day parenting realities and therefore an effort to coordinate support services across all disciplines could be made to improve outcomes for both parents and children.
被诊断为自闭症谱系障碍（ASD）的儿童通常社交功能受损，表现出重复、刻板和自我刺激行为，这使他们容易受到公众的污名化。然而，污名化不仅影响具有污名化特征的人群，如患有ASD的儿童，还往往包括与他们相关的其他人，包括父母。这被称为附属污名。然而，如果公众意识较高，附属污名就不太可能发生。鉴于该地区对ASD的认识仍然相对较低，而且正如文献综述所示，东南亚，特别是马来西亚，针对污名与ASD的研究有限，本研究具有重要意义，尤其是在东方和其他发展中国家的背景下。本研究的目的是探讨父母在照顾患有ASD的孩子时的照顾经历、对附属污名、心理韧性和生活质量（QoL）的看法。
本文是一项顺序解释性混合方法研究的一部分，在对144名父母进行横断面研究之后，采用定性方法探讨父母的照顾经历以及他们对附属污名、心理韧性和生活质量的看法。参与者是在马来西亚东北部一个州的两家三级公立医院陪同孩子接受治疗时招募的。11名年龄在2至12岁的患有ASD儿童的父母参与了研究。定性数据分析遵循布劳恩和克拉克的主题分析方法。
确定了四个主题：生活质量的意义、ASD与生活调整、感知到的污名和心理韧性。
这是东南亚第一项关于父母在ASD背景下感知到的附属污名、心理韧性和生活质量的研究。这些发现可以让医护人员和政策制定者了解日常育儿的实际情况，因此可以努力协调所有学科的支持服务，以改善父母和孩子的结局。
