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THE EXPERIENCES OF MATERNAL CAREGIVERS OF CHILDREN WITH AUTISM
|Title:||THE EXPERIENCES OF MATERNAL CAREGIVERS OF CHILDREN WITH AUTISM|
|Authors:||Wong, Kalma K.|
|Contributors:||Zhang, Wei (advisor)|
|Date Issued:||Dec 2018|
|Publisher:||University of Hawaiʻi at Mānoa|
|Abstract:||Autism is a complex neurobiological disorder that currently affects approximately 1 in 59 children in the United States (CDC 2018). Some common symptoms associated with autism include inappropriate and repetitive behaviors, difficulties with communication and social interaction, and gastrointestinal problems. These characteristics can make caring for a child with autism particularly challenging and stressful. Caring for children with autism has been shown to affect the well-being and mental health of parents, particularly mothers (Benson 2010; Gatzoyia et al. 2014; Peters-Scheffer, Didden, and Korzilius 2012; Stuart and McGrew 2009). In addition, autism can be a particularly expensive disability to deal with (Green 2007; Wang et al. 2013). |
The purpose of this study is to describe and understand the maternal experience of caring for children with autism. Using the Stress Process Theory as a guide, this study aims to identify the challenges and positive aspects of caring for a child with autism, as well as the financial, emotional, and physical impacts of caring for a child with autism. This study also looks at how these mothers utilize social support and coping to mediate the stress of caregiving, and how the meanings they ascribe to their caregiving experience help to explain whether the demands of caring for their children is seen as positive or burdensome.
In-depth semi-structured interviews of 21 mothers of children with autism under the age of 18 in Honolulu, Hawaii were completed for this study. The thematic analysis revealed four themes that can be categorized as stressors (concern for the child’s future independence, finding the right services for autism, safety, and trust), two themes that can be categorized as resources (social support and learning about autism), and two themes that can be classified as outcomes (emotional reactions to caring for a child with autism and mother’s self-care). The overarching theme of the study was the unclear path that the mothers must take after their children have been diagnosed with autism.
The majority of the mothers interviewed for this study expressed that they experienced stress, anxiety, depression, or anger since the diagnosis of their children. The majority of the mothers also said that they experienced some form of adverse physical effect (e.g., exhaustion or high blood pressure) since the diagnosis. The findings of this study highlight the need for more support for mothers of children with autism and the need for coordination between the medical community, the mental health resources, the behavioral analysts, and the government agencies that provide autism services.
|Description:||Ph.D. Thesis. University of Hawaiʻi at Mānoa 2018.|
|Rights:||All UHM dissertations and theses are protected by copyright. They may be viewed from this source for any purpose, but reproduction or distribution in any format is prohibited without written permission from the copyright owner.|
|Appears in Collections:||
Ph.D. - Sociology|
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