Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study

Ilias, Kartini; Liaw, Jeanette Hui Jean; Cornish, Kim; Park, Miriam Sang‐Ah; Golden, Karen Jennifer

doi:10.3109/13668250.2016.1196657

Cited by 56 publications

(63 citation statements)

References 52 publications

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“…Remarkably, more than half of the total reviewed studies were found to also investigate coping strategies/mechanism among parents of children with ASD (Liwag, 1989 ; Foronda, 2000 ; Ting and Chuah, 2010 ; Callos, 2012 ; Sian and Tan, 2012 ; Resurreccion, 2013 ; Wahyuni, 2013 ; Wisessathorn et al, 2013 ; Foo et al, 2014 ; Xue et al, 2014 ; Lai et al, 2015 ; Quilendrino et al, 2015 ; Roffeei et al, 2015 ; Santoso et al, 2015 ; Siah and Tan, 2015 , 2016 ; Chong and Kua, 2016 ; Ilias et al, 2016 ). This focus area suggests that even within the SEA region, there is awareness for the need to inclusively discuss coping strategies for parents of children with ASD as opposed to merely focusing on intervention strategies for the child diagnosed with ASD.…”

Section: Resultsmentioning

confidence: 99%

“…Severity of autism symptoms . Besides social support, severity of autism symptoms was also found to affect parenting stress among parents of children with ASD (Liwag, 1989 ; Foronda, 2000 ; Nikmat et al, 2008 ; Charnsil and Bathia, 2010 ; Yeo and Lu, 2012 ; Athari et al, 2013 ; Wisessathorn et al, 2013 ; Lai et al, 2015 ; Ilias et al, 2016 ). Using a comparison group (parents of children with typical development) in a Singaporean sample, a study was able to show that parents of children with ASD (who were found to have a greater experience of difficult child behavior) had higher levels of parenting stress (Lai et al, 2015 ).…”

Section: Resultsmentioning

confidence: 99%

“…The relatively broader research in the Western and/or European context denotes the greater awareness and support for the autism community in those countries. In contrast, the awareness of mental health and specifically ASD is still growing in the Asian region, and therefore, is still in the early stages of receiving the necessary support (Ilias et al, 2008 , 2016 ; Sun and Allison, 2010 ; Neik et al, 2014 ). Hence, it is imperative to determine how support may be catered toward the autism community in the under-investigated Asian countries.…”

Section: Introductionmentioning

confidence: 99%

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Parenting Stress and Resilience in Parents of Children With Autism Spectrum Disorder (ASD) in Southeast Asia: A Systematic Review

et al. 2018

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Background: This paper aimed to review the literature on the factors associated with parenting stress and resilience among parents of children with autism spectrum disorder (ASD) in the South East Asia (SEA) region.Methods: An extensive search of articles in multiple online databases (PsycNET, ProQuest, PudMed, EMBASE, CINAHL, Web of Science, and Google Scholar) resulted in 28 papers that met the inclusion criteria (i.e., conducted in the SEA region, specific to ASD only, published in a peer-reviewed journal, full text in English). Studies found were conducted in the following countries: Brunei, n = 1; Indonesia, n = 2; Malaysia, n = 12; Philippines, n = 5; Singapore, n = 5, Thailand, n = 2; and Vietnam, n = 1, but none from Cambodia, East Timor, Laos, and Myanmar were identified.Results: Across the studies, six main factors were found to be associated with parenting stress: social support, severity of autism symptoms, financial difficulty, parents' perception and understanding toward ASD, parents' anxiety and worries about their child's future, and religious beliefs. These six factors could also be categorized as either a source of parenting stress or a coping strategy/resilience mechanism that may attenuate parenting stress.Conclusion: The findings suggest that greater support services in Western countries may underlie the cultural differences observed in the SEA region. Limitations in the current review were identified. The limited number of studies yielded from the search suggests a need for expanded research on ASD and parenting stress, coping, and resilience in the SEA region especially in Cambodia, East Timor, Laos, and Myanmar. The identified stress and resilience factors may serve as sociocultural markers for clinicians, psychologists, and other professionals to consider when supporting parents of children with ASD.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Parenting Stress and Resilience in Parents of Children With Autism Spectrum Disorder (ASD) in Southeast Asia: A Systematic Review

et al. 2018

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“…Limited literacy around broad issues regarding mental health and development (Furnham & Hamid, 2014;Ganasen et al, 2008;Hoven et al, 2008), as well as limited autism awareness in specific (Abubakar, Ssewanyana, de Vries, et al, 2016;WHO, 2013), may affect if and when autism symptoms are recognised. A mother of a child with ASD in Malaysia was quoted (Ilias, Liaw, Cornish, Park, & Golden, 2017):…”

Section: Literacy In Mental Health and The Typical Child Developmentamentioning

confidence: 99%

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

2020

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Autism research is heavily skewed towards western high-income countries. Culturally appropriate screening and diagnostic instruments for autism are lacking in most low-and middle-income settings where the majority of the global autism population lives. To date, a clear overview of the possible cultural and contextual factors that may affect the process of identifying and diagnosing individuals with ASD is missing. This study aims to outline these factors by proposing a conceptual framework. A multidisciplinary review approach was applied to inform the development of the conceptual framework, combining a systematic review of the relevant autism research literature with a wider literature search spanning key texts in global mental health, cultural psychiatry, cross-cultural psychology and intellectual disability research. The resulting conceptual framework considers the identification, helpseeking and diagnostic process at four interrelated levels: i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms, and describes the cultural and contextual factors associated with each of these levels, including cultural norms of typical and atypical behaviour, culture-specific approaches to parenting, mental health literacy, cultural beliefs, attitudes and stigma, as well as the affordability, availability, accessibility and acceptability of services. This framework, mapping out the cultural and contextual factors that can affect the identification, help-seeking and diagnosis of ASD, may function as a springboard for the development of culturally appropriate autism screening and diagnostic instruments, and inform future cross-cultural autism research directions. The framework also has relevance for clinicians and policy makers aiming to improve support for underserved autism populations worldwide. Lay summaryThe vast majority of autism research is conducted in western high-income settings. We therefore know relatively little of how culture and context can affect the identification, helpseeking and diagnosis of autism across the globe. This paper synthesises what is known from the autism research literature and a broader literature and maps out how culture and context may affect i) the expression, ii) recognition, iii) interpretation and iv) reporting of autism symptoms.

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“…In Malaysia, there are social incidents involving individuals with ASD that cause stigma towards them, but at the same time, heighten the awareness for a better understanding of ASD (The Star, 2018). Yet, limited studies on ASD have been conducted in South‐East Asia, including Malaysia (Chu, Tang, McConnell, Hanif, & Yuen, 2019; Clark, Brown, & Karrapaya, 2012; Ilias et al, 2018; Ilias, Liaw, Cornish, Park, & Golden, 2017; Joginder Singh, Chan, & Ahmad Rusli, 2016; Neik, Lee, Low, Chia, & Chua, 2014). Several studies on ASD in Malaysia reported in the literature focus on the well‐being of parents of children with ASD.…”

Section: Introductionmentioning

confidence: 99%

Self‐stigma and its associations with stress and quality of life among Malaysian parents of children with autism

Chu

Park

Lee

et al. 2020

Child

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Background This study explored the relationship between self‐perceived stigmatization (affiliate stigma), stress and quality of life among parents of children with autism spectrum disorder (ASD). Method Participants (N = 110) filled‐in the Affiliate Stigma Scale, the Caregiver Burden Inventory and the CarerQOL scale. Results Parents reported low scores on stigma and fair levels of stress and quality of life, indicating that parents do not feel stigmatized by affiliation with a child with ASD nor are they stressed from affiliate stigma. After controlling for demographic factors, both the relationships of affiliate stigma with stress and with quality of life were weak, indicating that stigma may have little to no effect on stress and quality of life. Conclusion Cultural and religious beliefs may play a part in the acceptance of a child's condition, resulting in less impact of stigma on the parents.

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Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study

Cited by 56 publications

References 52 publications

Parenting Stress and Resilience in Parents of Children With Autism Spectrum Disorder (ASD) in Southeast Asia: A Systematic Review

Parenting Stress and Resilience in Parents of Children With Autism Spectrum Disorder (ASD) in Southeast Asia: A Systematic Review

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

Self‐stigma and its associations with stress and quality of life among Malaysian parents of children with autism

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