Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States / Shixi ZHAO in Autism Research, 17-12 (December 2024)  

Public ISBD [article]  inAutism Research > 17-12 (December 2024) . - p.2471-2486 Titre : Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States Type de document : Texte imprimé et/ou numérique Auteurs : Shixi ZHAO, Auteur ; Ming LI, Auteur ; Wei-Ju CHEN, Auteur ; Brandon J. RENNIE, Auteur ; Yu-Yu HSIAO, Auteur ; Yue GUAN, Auteur Article en page(s) : p.2471-2486 Langues : Anglais (eng) Mots-clés : autism spectrum disorders  experiences  genetic testing recommendations  healthcare providers  parents  perspectives Index. décimale : PER Périodiques Résumé : Abstract Although genetic testing is recommended for all children diagnosed with autism spectrum disorder (ASD) in the United States, it remains unclear how many parents have received and followed these recommendations. This study aimed to assess parental experiences and perspectives of healthcare providers' genetic testing recommendations. A total of 1043 parents of children with ASD from Simons Foundation Powering Autism Research for Knowledge completed an online survey. Only about one-third of the parents (34.2%) reported that their children's providers had recommended genetic testing. Factors associated with whether parents received these recommendations included the type of healthcare providers diagnosing ASD, parents' knowledge of genetic testing, the age of their children's diagnosis, and the presence of certain co-occurring medical conditions in their children. Our study also revealed that most parents (76.9%) who received recommendations had pursued genetic testing for their children. Adherence to the recommendations was associated with the characteristics of the parents (i.e., age and employment status) and children (i.e., gender), and their trust in the information from providers. The findings highlight the critical role of healthcare providers in facilitating genetic testing among families of children with ASD. Healthcare providers are recommended to increase their competencies and practice in providing genetic testing recommendations for ASD, assist parents in navigating testing challenges, and support parents through the testing process. En ligne : https://dx.doi.org/10.1002/aur.3262 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544 [article] Parental experiences and perspectives of healthcare providers' genetic testing recommendations for their children diagnosed with autism spectrum disorder in the United States [Texte imprimé et/ou numérique] / Shixi ZHAO, Auteur ; Ming LI, Auteur ; Wei-Ju CHEN, Auteur ; Brandon J. RENNIE, Auteur ; Yu-Yu HSIAO, Auteur ; Yue GUAN, Auteur . - p.2471-2486. Langues : Anglais (eng) in Autism Research > 17-12 (December 2024) . - p.2471-2486 Mots-clés : autism spectrum disorders  experiences  genetic testing recommendations  healthcare providers  parents  perspectives Index. décimale : PER Périodiques Résumé : Abstract Although genetic testing is recommended for all children diagnosed with autism spectrum disorder (ASD) in the United States, it remains unclear how many parents have received and followed these recommendations. This study aimed to assess parental experiences and perspectives of healthcare providers' genetic testing recommendations. A total of 1043 parents of children with ASD from Simons Foundation Powering Autism Research for Knowledge completed an online survey. Only about one-third of the parents (34.2%) reported that their children's providers had recommended genetic testing. Factors associated with whether parents received these recommendations included the type of healthcare providers diagnosing ASD, parents' knowledge of genetic testing, the age of their children's diagnosis, and the presence of certain co-occurring medical conditions in their children. Our study also revealed that most parents (76.9%) who received recommendations had pursued genetic testing for their children. Adherence to the recommendations was associated with the characteristics of the parents (i.e., age and employment status) and children (i.e., gender), and their trust in the information from providers. The findings highlight the critical role of healthcare providers in facilitating genetic testing among families of children with ASD. Healthcare providers are recommended to increase their competencies and practice in providing genetic testing recommendations for ASD, assist parents in navigating testing challenges, and support parents through the testing process. En ligne : https://dx.doi.org/10.1002/aur.3262 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=544

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 et/ou numérique 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 et/ou numérique] / 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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