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Autism Genetic Testing: A Qualitative Study about the Information Needs among Taiwanese Parents having Children with Autism Spectrum Disorders (ASD)
Tuesday, November 18, 2014
Lei Xu, Ph.D.
,
Department of Health Education and Promotion, East Carolina University, Greenville, NC
Chunling Li, M.A.
,
Department of Foreign Languages, WeiFang Medical University, Shandong,, China
Chen-Hui Wang, M.S.
,
Department of Special Education, National HsinChu University of Education, Hsinchu City, Taiwan
Tse-Yang Huang, Ph.D.
,
Department of Special Education, National HsinChu University of Education, HsinChu, Taiwan
Divya Talwar, M.P.H.
,
Department of Health and Kinesiology, Texas A&M University, College Station, TX
Lei-Shih Chen, Ph.D., P.T., C.H.E.S.
,
Department of Health and Kinesiology, Texas A&M University, College Station, TX
Autism Spectrum disorders (ASD) genetic testing is a routine clinical practice and an integral diagnostic process for assessing ASD in the U.S. Globally, Taiwan is anticipated to offer ASD genetic testing in the future. Before the widespread implementation of this test, it is vital to explore the information needs of the affected population. This first-of-its-kind study explored the information needs regarding ASD genetic testing among Taiwanese parents with ASD children. We adopted a qualitative research method and conducted semi-structured interviews with Taiwanese parents having ASD children from various ASD communities. Our data reached saturation with 39 parents. All interview data was audio-taped and analyzed through content analysis. Our sample consisted of 31 mothers (79.5%) and eight fathers (20.5%) with a mean age of 42 years. About 61.5% of the people in our sample have either received a college degree, or an advanced degree. Most parents (95%) were interested in receiving education about ASD genetic testing. Their five preferred topics were genetic test procedure (28.2%), cost (23.0%), test accuracy (20.5%), basic genetic information about ASD (17.9%), and test safety (17.9%). The participants preferred modes of education were DVD, Web-based education, brochures/reading materials, instructions through doctors or nurses, and workshops/seminars. The desired education length among the majority ranged from 30 minutes to two hours. Parents with ASD children in this sample were interested in genetic education associated with ASD genetic testing. Our study strongly suggests the comprehensive educational directives before the provision of ASD genetic services to Taiwanese parents with ASD children.
Learning Areas:
Advocacy for health and health education
Diversity and culture
Implementation of health education strategies, interventions and programs
Public health or related education
Learning Objectives:
Describe information needs about ASD genetic testing among parents of children with ASD in Taiwan.
List preferred mediums of educational interventions related to autism genetic testing among Taiwanese parents of children with ASD.
Keyword(s): Disabilities, International Health
Presenting author's disclosure statement:Qualified on the content I am responsible for because: During my doctoral study period, I have been engaged in high impact research focusing on public health genomics, a cutting-edge field that applies the knowledge of human genetics into health promotion and disease prevention. In particular, I am specialized in conducting community-based health education aiming at promoting the utilization of family health history and providing genomic education to underserved autism communities.
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.
