Zhao, Shixi (2018-08). Autism Spectrum Disorders (ASD) Genetic Testing; Perspectives Among Parents of Children Diagnosed with ASD. Doctoral Dissertation. Thesis uri icon

abstract

  • Autism Spectrum Disorders (ASD) genetic testing has been recommended to children diagnosed with ASD for the evaluation of genetic etiology by leading medical organizations in the U.S. Yet, the utilization of ASD genetic testing for children with ASD is low. Although several studies have investigated factors associated with the underutilization of ASD genetic testing, parents' perspective regarding this testing has been overlooked. To address such issue, through four research studies, this dissertation seeks to examine parents' perception, intention, experience, and education needs related to ASD genetic testing. The first study focuses on the development and psychometric testing of a theory-based survey which measured parents' intention in taking their affected children for ASD genetic testing and related psychosocial factors. Findings of this study showed that the survey is reliable and valid in assessing parents' intention as well as associated factors. The second study examines the relationships among psychosocial factors associated with parents' test-taking intention. Data were analyzed using structural equation modeling. This study demonstrated that parental test-taking intention was significantly associated with the constructs proposed in the model. The third study investigates parents' utilization of ASD genetic testing as well as their testing experience. Results indicated that most parents have not had their affected children undergo ASD genetic testing. For parents had their affected children tested, most of them were satisfied with the testing and would recommend it to other parents of children with ASD. The fourth study explores parents' education needs regarding ASD genetic testing. Results showed that most parents were interested in receiving educational information about ASD genetic testing (e.g., accuracy, benefits, cost). Web-based approach was identified to be the most effective delivery method. The findings from the studies presented in this dissertation have direct implications for researchers and healthcare professionals. Specifically, it can potentially (1) assist researchers in examining factors associated with parents' intention in ASD genetic testing, (2) help healthcare professionals provide tailored information to parents regarding ASD genetic testing, as well as (3) contribute to the development of theory- and evidence-based interventions to improve the unitization of ASD genetic testing among parents of children with ASD.
  • Autism Spectrum Disorders (ASD) genetic testing has been recommended to children diagnosed with ASD for the evaluation of genetic etiology by leading medical organizations in the U.S. Yet, the utilization of ASD genetic testing for children with ASD is low. Although several studies have investigated factors associated with the underutilization of ASD genetic testing, parents' perspective regarding this testing has been overlooked. To address such issue, through four research studies, this dissertation seeks to examine parents' perception, intention, experience, and education needs related to ASD genetic testing.

    The first study focuses on the development and psychometric testing of a theory-based survey which measured parents' intention in taking their affected children for ASD genetic testing and related psychosocial factors. Findings of this study showed that the survey is reliable and valid in assessing parents' intention as well as associated factors. The second study examines the relationships among psychosocial factors associated with parents' test-taking intention. Data were analyzed using structural equation modeling. This study demonstrated that parental test-taking intention was significantly associated with the constructs proposed in the model. The third study investigates parents' utilization of ASD genetic testing as well as their testing experience. Results indicated that most parents have not had their affected children undergo ASD genetic testing. For parents had their affected children tested, most of them were satisfied with the testing and would recommend it to other parents of children with ASD. The fourth study explores parents' education needs regarding ASD genetic testing. Results showed that most parents were interested in receiving educational information about ASD genetic testing (e.g., accuracy, benefits, cost). Web-based approach was identified to be the most effective delivery method.

    The findings from the studies presented in this dissertation have direct implications for researchers and healthcare professionals. Specifically, it can potentially (1) assist researchers in examining factors associated with parents' intention in ASD genetic testing, (2) help healthcare professionals provide tailored information to parents regarding ASD genetic testing, as well as (3) contribute to the development of theory- and evidence-based interventions to improve the unitization of ASD genetic testing among parents of children with ASD.

publication date

  • August 2018