Abstract
Background: Although Chromosomal Microarray (CMA) genetic testing is currently officially recommended as a part of the routine care in the Autism Spectrum Disorders diagnostic process, little is known about parent’s emotional responses regarding taking their children to undergo CMA genetic testing. To ensure adequate access to and utilization of genetic technologies and dispel the concerns regarding CMA, it is critical to understand parents’ emotional responses to this test. Method: We conducted qualitative interviews using a purposive sampling technique with 45 parents of children with ASD in rural eastern North Carolina. This geographical location maintains one of the highest rates of families who are Medicaid-eligible and underserved parents of children with ASD in North Carolina. Results: We audio-taped all interviews, transcribed them verbatim, and conducted content analysis to identify themes and subthemes. Approximately 37% of our participants had more than one child with autism. Almost half of our parents (42.8%) were ethnic minorities and all Hispanic parents (26.3%) either had no health insurance or were Medicaid-eligible. Our preliminary results demonstrate that negative emotions, such as fear or guilt might be the factors most likely associated with parents’ decisions regarding taking their children to undergo CMA testing. Conclusion: The most salient research finding is that over half of the participants (58%) reported having negative emotions toward CMA. Among these negative emotions, the feeling of fear, worry, anxiety, self-blaming and stress were the most frequently reported responses regardless parents’ educational level, income and ethnicity. Pre-testing counseling that address parents’ negative emotions would be in urgent need to dispel parents’ concerns related to CMA.
Highlights
Autism spectrum disorder, constitutes a wide range of developmental conditions featured by impaired social development and interaction, as well as disrupted patterns of behaviors [1]
Due to the important role genetic factors play in the possible causes of ASD, clinical genetic evaluation, such as genetic tests and counseling, have the potential to bring benefits for parents and families of children with ASD [6]
Among existing genetic tests associated with ASD, Chromosomal Microarray Analysis (CMA) has been recently endorsed as a first-tier test by the American College of Medical Genetics owing to its improved detection of genomic abnormalities [7]
Summary
Autism spectrum disorder (or ASD), constitutes a wide range of developmental conditions featured by impaired social development and interaction, as well as disrupted patterns of behaviors [1]. As indicated by the International Standard Cytogenomic Array Consortium, the discovery of copy number variants through CMA testing may be stored in a database for future access and further analysis [4]. This and other types of genotypic information allow for the proposal of new candidate genes which may advance etiological knowledge. Chromosomal Microarray (CMA) genetic testing is currently officially recommended as a part of the routine care in the Autism Spectrum Disorders diagnostic process, little is known about parents’ emotional responses regarding taking their children to undergo CMA genetic testing. To ensure adequate access to and utilization of genetic technologies and dispel the concerns regarding CMA, it is critical to understand parents’ emotional responses to this test
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