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Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)

Winslow, Hayley R

Abstract Details

2017, Master of Science, Ohio State University, Genetic Counseling.
Many children who are given a diagnosis of autism spectrum disorder (ASD) are offered a chromosomal microarray and often other genetic tests for conditions like Fragile X syndrome, as a routine component of a diagnostic evaluation. However, not every family has the opportunity to meet with a genetic counselor or other genetic provider to discuss the process, benefits and limitations, and the results of genetic testing for ASD. The purpose of this study was: 1) to assess the perceptions and attitudes of parents surrounding the genetic testing process, and 2) to see if these perceptions differed based on the provider that counseled the family. Participants were divided into those who had already completed genetic testing (Group A) and those who had not yet (Group B). Group A was sent one 16-question survey and Group B was sent an 8-question survey before and after testing. Responses in Group A were split into three categories: those who saw a genetic counselor, a non-genetic provider, or an unknown provider. All Group B participants saw a genetic counselor. In Group A, there was a statistically significant difference between the provider groups in participants’ ratings of the quality of the testing explanation, the explanation quality and understanding of results, and overall satisfaction with the process. The Group B data appeared consistent with these findings. However, the themes identified in the short answer survey questions were not exclusive to one provider group. Many participants displayed a limited understanding of the result interpretation, cited concerns outside of the testing discussion, or indicated the desire for greater follow-up regardless of which provider counseled them. While these data support the benefit of involving a genetic counselor, several changes could be made in this clinic to improve patient satisfaction and understanding of the genetic testing process.
Dawn Allain, MS, LGC (Advisor)
Emily Hansen-Kiss, MS, MA, LGC (Committee Member)
Anita Narayanan, MD (Committee Member)
82 p.

Recommended Citations

Citations

  • Winslow, H. R. (2017). Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD) [Master's thesis, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1492505122437373

    APA Style (7th edition)

  • Winslow, Hayley. Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD). 2017. Ohio State University, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1492505122437373.

    MLA Style (8th edition)

  • Winslow, Hayley. "Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)." Master's thesis, Ohio State University, 2017. http://rave.ohiolink.edu/etdc/view?acc_num=osu1492505122437373

    Chicago Manual of Style (17th edition)