Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders / Lei-Shih CHEN in Autism, 23-4 (May 2019)  

Public ISBD [article]  inAutism > 23-4 (May 2019) . - p.902-909 Titre : Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders Type de document : texte imprimé Auteurs : Lei-Shih CHEN, Auteur ; Jungkyung MIN, Auteur ; Shixi ZHAO, Auteur ; Yu-Chen YEH, Auteur ; Tse-Yang HUANG, Auteur Article en page(s) : p.902-909 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  education  genetic testing  needs assessment Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1177/1362361318778903 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397 [article] Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders [texte imprimé] / Lei-Shih CHEN, Auteur ; Jungkyung MIN, Auteur ; Shixi ZHAO, Auteur ; Yu-Chen YEH, Auteur ; Tse-Yang HUANG, Auteur . - p.902-909. Langues : Anglais (eng) in Autism > 23-4 (May 2019) . - p.902-909 Mots-clés : Autism spectrum disorders  education  genetic testing  needs assessment Index. décimale : PER Périodiques Résumé : 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. En ligne : http://dx.doi.org/10.1177/1362361318778903 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=397

A qualitative study exploring the attitudes toward prenatal genetic testing for autism spectrum disorders among parents of affected children in Taiwan / Shixi ZHAO in Research in Autism Spectrum Disorders, 48 (April 2018)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 48 (April 2018) . - p.36-43 Titre : A qualitative study exploring the attitudes toward prenatal genetic testing for autism spectrum disorders among parents of affected children in Taiwan Type de document : texte imprimé Auteurs : Shixi ZHAO, Auteur ; Chen-Hui WANG, Auteur ; Tse-Yang HUANG, Auteur ; Yann-Jang CHEN, Auteur ; Ching-Hua HSIAO, Auteur ; Chie-Chien TSENG, Auteur ; Lei XU, Auteur ; Lei-Shih CHEN, Auteur Article en page(s) : p.36-43 Langues : Anglais (eng) Mots-clés : Autism  Parents  Prenatal genetic testing  Abortion  Taiwan Index. décimale : PER Périodiques Résumé : Background Prenatal genetic testing (PGT) for Autism Spectrum Disorders (ASD) raises more complex ethical, legal, and social implications in Taiwan than in Western countries due to policy-related, practical, cultural, and familial reasons. This first qualitative study examines attitudes towards PGT for ASD among Taiwanese parents of children with ASD – an elevated risk group for having another affected child, and one that is mostly likely to be impacted by PGT for ASD. Methods We conducted in-depth, face-to-face, individual, semi-structured interviews with 39 parents of children with ASD from various ASD organizations in Taiwan. Results Most parents favored PGT for ASD mainly for terminating the affected pregnancy and receiving early intervention and treatment. Less than one-third of participants was against PGT for ASD due to perceived no value for this testing, contradiction with religion and/or personal beliefs, doubt of the test’s accuracy, or concerns about the negative consequences of the testing. Conclusion The majority of Taiwanese parents of children with ASD in this study supported PGT for ASD. Guidelines and regulations should be developed to regulate the provision and quality of this testing. Genetic counseling should also be recommended to parents of children with ASD in Taiwan. En ligne : https://doi.org/10.1016/j.rasd.2018.01.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=340 [article] A qualitative study exploring the attitudes toward prenatal genetic testing for autism spectrum disorders among parents of affected children in Taiwan [texte imprimé] / Shixi ZHAO, Auteur ; Chen-Hui WANG, Auteur ; Tse-Yang HUANG, Auteur ; Yann-Jang CHEN, Auteur ; Ching-Hua HSIAO, Auteur ; Chie-Chien TSENG, Auteur ; Lei XU, Auteur ; Lei-Shih CHEN, Auteur . - p.36-43. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 48 (April 2018) . - p.36-43 Mots-clés : Autism  Parents  Prenatal genetic testing  Abortion  Taiwan Index. décimale : PER Périodiques Résumé : Background Prenatal genetic testing (PGT) for Autism Spectrum Disorders (ASD) raises more complex ethical, legal, and social implications in Taiwan than in Western countries due to policy-related, practical, cultural, and familial reasons. This first qualitative study examines attitudes towards PGT for ASD among Taiwanese parents of children with ASD – an elevated risk group for having another affected child, and one that is mostly likely to be impacted by PGT for ASD. Methods We conducted in-depth, face-to-face, individual, semi-structured interviews with 39 parents of children with ASD from various ASD organizations in Taiwan. Results Most parents favored PGT for ASD mainly for terminating the affected pregnancy and receiving early intervention and treatment. Less than one-third of participants was against PGT for ASD due to perceived no value for this testing, contradiction with religion and/or personal beliefs, doubt of the test’s accuracy, or concerns about the negative consequences of the testing. Conclusion The majority of Taiwanese parents of children with ASD in this study supported PGT for ASD. Guidelines and regulations should be developed to regulate the provision and quality of this testing. Genetic counseling should also be recommended to parents of children with ASD in Taiwan. En ligne : https://doi.org/10.1016/j.rasd.2018.01.006 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=340

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