Online Program

Are Parents Ready for Chromosomal Microarray Genetic Testing of Their Children? – A Qualitative Report from Parents of Children with Autism Spectrum Disorders in Rural Settings

Monday, November 2, 2015

Lei Xu, Ph.D., Department of Health Education and Promotion, East Carolina University, Greenville, NC
Linda Crane Mitchell, Ph.D., College of Human Ecology, East Carolina University, Greenville, NC
Alice Richman, PhD, MPH, Department of Health Education and Promotion, East Carolina University, College of Health and Human Performance, Greenville, NC
Wura Jacobs, Ph.D., Department of Health and Kinesiology, Texas A&M University, College Station, NC
Chromosomal Microarray Analysis (CMA) is a robust technology officially recommended and clinically offered to children affected with Autism Spectrum Disorders (ASD). However, CMA genetic testing might raise ethical, legal and social issues such stigmatization, health insurance concerns and test misconceptions. Therefore, it is essential to understand what might motivate or inhibit test decisions among parents of children with ASD.  We conducted semi-structured, individual, face-to-face interviews (English/Spanish) with autistic children’s parents from local autism communities in Eastern North Carolina. We audio-taped all interviews, transcribed them verbatim, and employed content analysis to identify themes and subthemes. Our final sample was comprised of 43 parents with a mean age of 40 years. Among these parents, 57% were spouses (biological mothers and fathers of the child/children with ASD). One fourth of parents were low-income, underserved and Hispanic. Our findings indicate that none of our parents had heard of CMA genetic testing or had met with a genetic counselor or other health care provider about CMA. The majority of parents (65%) reported that they would like to have their children tested if this test is offered to them. The most cited perceived benefits to having the test were having knowledge for early intervention and the benefits to aiding autism genetic research. However, our parents raised many test concerns, for instance, cost, CMA test procedure, stigmatization and transportation. Our findings highlight the need for culturally-appropriate educational interventions targeted at increasing parental knowledge of and accessibility to CMA testing among parents of children with ASD.

Learning Areas:

Public health or related education
Social and behavioral sciences

Learning Objectives:
Describe the parental opinions, attitude and intention on taking their children to undergo CMA genetic testing in low-income, and economically disadvantaged areas Discuss clinical implications and future directions for helping parents to make informed decisions

Keyword(s): Behavioral Research, Health Disparities/Inequities

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to be an abstract author because I synthesized this research ideas, conducted interviews, analyzed data and wrote the manuscript for this paper.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.