Abstract
Autism spectrum disorder present challenges, stress, and burdens to caregivers. In order to ensure the quality of life especially the well-being of caregivers, they need necessary supports. This study uses a qualitative method which is in-depth interviews to explore the domains of caregivers’ burden and challenges as well as their coping mechanisms. This study has been conducted among caregivers registered with NASOM Melaka. A total of 8 respondents participated in this study voluntarily, consisting of 7 women and a man. The data was collected via a series of online interviews. The analysis was conducted based on thematic analysis. Financial, emotional, physical, and social life challenges are the domains contributing to the burden of caregiving. The financial issue is reported to be the most important challenge in caregiving. This is due to the high costs involved in the management of treatment and therapy, as well as the cost of food and daily expenses. Acceptance and spiritual aspects are the positive coping mechanisms for the management and caregiving of autistic children. In conclusion, caregivers also need emotional and practical supports from family members. Government and Non-Governmental Organisations should be more attentive to the need and constraints faced by the caregivers, especially financial constraint.
Highlights
Autism Spectrum Disorder (ASD) is one of the groups categorized as disabled under the category of learning disabilities (Department of Social Welfare, 2019)
The challenges experienced by working parents and caregivers themselves are related to their own well-being and the quality of care for autistic children
The researcher has set some parameters or conditions that needed to be met by the respondents: a. respondents must be an individual caring for or a family member who cares for autistic children
Summary
Autism Spectrum Disorder (ASD) is one of the groups categorized as disabled under the category of learning disabilities (Department of Social Welfare, 2019). The autistic characteristics of individuals categorized as ASD are still difficult to be treated due to the complexity of the condition. Given the nature of this disorder, caregiving autistic children is inevitably more challenging than caregiving normal children. In this regard, the challenges experienced by working parents and caregivers themselves are related to their own well-being and the quality of care for autistic children. According to the Family Health Division, Ministry of Health (2016), the prevalence rate of autistic children in Malaysia is estimated at 1.6 in 1000 people, while in the United States of America the prevalence rate among children is generally estimated at around 14.7 per 1000, which is 1 out of 68 children aged 8 years (CDC, 2014). Most individuals with this disorder are boys rather than girls (Karaarslan & Kully, 2015)
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