title: Autism genetic testing information needs among parents of affected children: A qualitative study.
abstract: Leading health agencies recommend physicians to provide information regarding genetic testing for autism spectrum disorders (ASD) to parents of affected children. How to effectively provide this information, however, is unclear for physicians. This qualitative study examined the information needs regarding ASD genetic testing among parents of affected children.
  
  
  
  Semi-structured, in-depth interviews were conducted with 42 parents who had at least one child with ASD. Content analysis was utilized to analyze the interview data.
  
  
  
  The majority of parents (83%) reported they had never received information regarding ASD genetic testing from their doctors. Nevertheless, most parents (86%) expressed an interest to learn about this information. Their preferred topics included: cost (60%), benefits (48%), accuracy (38%), test procedure (29%), potential physical harms from the test (29%), confidentiality (12%), previous utilization by other affected families (2%), and eligibility criteria for this genetic testing (2%). Moreover, parents mentioned various methods to facilitate their learning, including Web-based approaches (43%), workshops/seminars (36%), brochures and flyers (31%), and videos (10%).
  
  
  
  To promote parental informed decision-making regarding ASD genetic testing, educational materials should be developed based on our findings.
  
  
  
  Application of these needs assessment findings will subsequently improve the delivery of healthcare services.
authors: Texas A&M University, Department of Health and Kinesiology, College Station, USA.
authors: Ming
authors: M
authors: Li
authors: Texas Woman's University, College of Health Sciences, Denton, USA.
authors: Ann
authors: A
authors: Amuta
authors: East Carolina University, Department of Health Education and Promotion, Greenville, USA.
authors: Lei
authors: L
authors: Xu
authors: Baylor College of Medicine, Department of Molecular & Human Genetics, Houston, USA.
authors: Shweta U
authors: SU
authors: Dhar
authors: Texas A&M University, Department of Health and Kinesiology, College Station, USA.
authors: Divya
authors: D
authors: Talwar
authors: Indiana University, Department of Curriculum and Instruction, Bloomington, USA.
authors: Eunju
authors: E
authors: Jung
authors: Texas A&M University, Department of Health and Kinesiology, College Station, USA. Electronic address: lace@hlkn.tamu.edu.
authors: Lei-Shih
authors: LS
authors: Chen
mesh_terms: D000067877:Autism Spectrum Disorder / Q000175:diagnosis* / Q000235:genetics* / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000379:methods; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D020380:Needs Assessment; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D011795:Surveys and Questionnaires
keywords: Autism spectrum disorders; Genetic testing; Needs assessment