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

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

Bibliographic Details
Main Author: Winslow, Hayley R.
Language:English
Published: The Ohio State University / OhioLINK 2017
Subjects:
Genetics
autism
ASD
genetic counseling
genetic testing
Online Access:http://rave.ohiolink.edu/etdc/view?acc_num=osu1492505122437373
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spelling ndltd-OhioLink-oai-etd.ohiolink.edu-osu14925051224373732021-08-03T07:01:44Z Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD) Winslow, Hayley R. Genetics autism ASD genetic counseling genetic testing 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. 2017-08-02 English text The Ohio State University / OhioLINK http://rave.ohiolink.edu/etdc/view?acc_num=osu1492505122437373 http://rave.ohiolink.edu/etdc/view?acc_num=osu1492505122437373 unrestricted This thesis or dissertation is protected by copyright: all rights reserved. It may not be copied or redistributed beyond the terms of applicable copyright laws.
collection NDLTD
language English
sources NDLTD
topic Genetics
autism
ASD
genetic counseling
genetic testing
spellingShingle Genetics
autism
ASD
genetic counseling
genetic testing
Winslow, Hayley R.
Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)
author Winslow, Hayley R.
author_facet Winslow, Hayley R.
author_sort Winslow, Hayley R.
title Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)
title_short Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)
title_full Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)
title_fullStr Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)
title_full_unstemmed Pre- and Post-Test Parent Perceptions of Genetic Testing for Children with Autism Spectrum Disorder (ASD)
title_sort pre- and post-test parent perceptions of genetic testing for children with autism spectrum disorder (asd)
publisher The Ohio State University / OhioLINK
publishDate 2017
url http://rave.ohiolink.edu/etdc/view?acc_num=osu1492505122437373
work_keys_str_mv AT winslowhayleyr preandposttestparentperceptionsofgenetictestingforchildrenwithautismspectrumdisorderasd
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