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An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)

Purpose: 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...

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Main Authors: Noor Suhada, Salleh, Tang, Li Yoong, Subhashini, Jayanath, Khatijah Lim, Abdullah *
Format: Article
Published: Dove Press 2022
Subjects:
HQ The family. Marriage. Woman
RJ Pediatrics
Online Access:http://eprints.sunway.edu.my/2999/
https://doi.org/10.2147/JMDH.S376869
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spelling my.sunway.eprints.29992024-08-06T01:02:51Z http://eprints.sunway.edu.my/2999/ An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD) Noor Suhada, Salleh Tang, Li Yoong Subhashini, Jayanath Khatijah Lim, Abdullah * HQ The family. Marriage. Woman RJ Pediatrics Purpose: 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. Methods: 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. Results: Four themes were identified: the meaning of QoL, ASD and life adjustment, perceived stigma, and resilience. Conclusion: 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. Dove Press 2022 Article PeerReviewed Noor Suhada, Salleh and Tang, Li Yoong and Subhashini, Jayanath and Khatijah Lim, Abdullah * (2022) An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD). Journal of Multidisciplinary Healthcare, 15. pp. 2053-2066. ISSN 1178-2390 https://doi.org/10.2147/JMDH.S376869 10.2147/JMDH.S376869
institution Sunway University
building Sunway Campus Library
collection Institutional Repository
continent Asia
country Malaysia
content_provider Sunway University
content_source Sunway Institutional Repository
url_provider http://eprints.sunway.edu.my/
topic HQ The family. Marriage. Woman
RJ Pediatrics
spellingShingle HQ The family. Marriage. Woman
RJ Pediatrics
Noor Suhada, Salleh
Tang, Li Yoong
Subhashini, Jayanath
Khatijah Lim, Abdullah *
An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)
description Purpose: 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. Methods: 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. Results: Four themes were identified: the meaning of QoL, ASD and life adjustment, perceived stigma, and resilience. Conclusion: 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.
format Article
author Noor Suhada, Salleh
Tang, Li Yoong
Subhashini, Jayanath
Khatijah Lim, Abdullah *
author_facet Noor Suhada, Salleh
Tang, Li Yoong
Subhashini, Jayanath
Khatijah Lim, Abdullah *
author_sort Noor Suhada, Salleh
title An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)
title_short An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)
title_full An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)
title_fullStr An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)
title_full_unstemmed An Explorative Study of Affiliate Stigma, Resilience, and Quality of Life Among Parents of Children with Autism Spectrum Disorder (ASD)
title_sort explorative study of affiliate stigma, resilience, and quality of life among parents of children with autism spectrum disorder (asd)
publisher Dove Press
publishDate 2022
url http://eprints.sunway.edu.my/2999/
https://doi.org/10.2147/JMDH.S376869
_version_ 1806692470585556992
score 13.211869

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