ERIC Number: EJ1217167
Record Type: Journal
Publication Date: 2019-May
Pages: 8
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: N/A
Information Needs in Genetic Testing: A Needs Assessment Survey among Taiwanese Parents of Children with Autism Spectrum Disorders
Chen, Lei-Shih; Min, Jungkyung; Zhao, Shixi; Yeh, Yu-Chen; Huang, Tse-Yang
Autism: The International Journal of Research and Practice, v23 n4 p902-909 May 2019
We conducted the first needs assessment study by examining the information needs in genetic testing for autism spectrum disorders among parents of children with autism spectrum disorders in Taiwan. Parents of children with autism spectrum disorders in 236 public elementary schools with special education services were invited to complete a survey. About two-thirds of participants (65.7%) had never heard about genetic testing for autism spectrum disorders. Yet, the majority (71.4%) expressed an interest in learning about this testing. The top three topics participants identified to assist them in making informed decisions before undergoing genetic testing (for themselves, their affected children, or other family members) were testing accuracy (79.7%), genetic causes of autism spectrum disorders (79.4%), and the link between testing and treatment (79.4%). A health education brochure (47.2%) was the most desired educational approach. Our results can be utilized to develop information and counseling materials for genetic testing for autism spectrum disorders in Taiwan as well as to address the needs of parents of children with autism spectrum disorders, particularly in informed decisions-making. Moreover, to promote better communication between the providers and parents, when discussing genetic testing for autism spectrum disorders with Taiwanese parents of children with autism spectrum disorders, healthcare professionals' priorities should be in line with the preferred topics identified in this study.
Descriptors: Foreign Countries, Needs Assessment, Genetic Disorders, Screening Tests, Autism, Pervasive Developmental Disorders, Parents, Children, Elementary School Students, Accuracy, Etiology, Intervention, Publications, Information Dissemination, Parent Attitudes, Information Sources
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Publication Type: Journal Articles; Reports - Research
Education Level: Elementary Education
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Taiwan
Grant or Contract Numbers: N/A