Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States / S. ZHAO in Journal of Autism and Developmental Disorders, 49-12 (December 2019)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 49-12 (December 2019) . - p.4821-4833 Titre : Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States Type de document : Texte imprimé et/ou numérique Auteurs : S. ZHAO, Auteur ; W. J. CHEN, Auteur ; S. U. DHAR, Auteur ; T. N. EBLE, Auteur ; O. M. KWOK, Auteur ; L. S. CHEN, Auteur Article en page(s) : p.4821-4833 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Experience  Genetic testing  Parents  Utilization Index. décimale : PER Périodiques Résumé : This study examined the experiences of Autism Spectrum Disorder (ASD) genetic testing among parents of children with ASD. A nationwide sample of 552 parents of children with ASD completed an online survey. Nearly one-quarter (22.5%) of the parents reported that their affected children had undergone ASD genetic testing. The testing utilization was associated with awareness of ASD genetic testing and whether information was received from healthcare providers. Among parents whose children with ASD were tested, 37.6% had negative experiences, which mainly due to lack of perceived testing benefits to their affected children and unpleasant testing experiences with healthcare providers. To provide better healthcare services, it is critical to ensure parents understand the purposes, benefits, and results of ASD genetic testing. En ligne : http://dx.doi.org/10.1007/s10803-019-04200-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=411 [article] Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States [Texte imprimé et/ou numérique] / S. ZHAO, Auteur ; W. J. CHEN, Auteur ; S. U. DHAR, Auteur ; T. N. EBLE, Auteur ; O. M. KWOK, Auteur ; L. S. CHEN, Auteur . - p.4821-4833. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 49-12 (December 2019) . - p.4821-4833 Mots-clés : Autism spectrum disorder  Experience  Genetic testing  Parents  Utilization Index. décimale : PER Périodiques Résumé : This study examined the experiences of Autism Spectrum Disorder (ASD) genetic testing among parents of children with ASD. A nationwide sample of 552 parents of children with ASD completed an online survey. Nearly one-quarter (22.5%) of the parents reported that their affected children had undergone ASD genetic testing. The testing utilization was associated with awareness of ASD genetic testing and whether information was received from healthcare providers. Among parents whose children with ASD were tested, 37.6% had negative experiences, which mainly due to lack of perceived testing benefits to their affected children and unpleasant testing experiences with healthcare providers. To provide better healthcare services, it is critical to ensure parents understand the purposes, benefits, and results of ASD genetic testing. En ligne : http://dx.doi.org/10.1007/s10803-019-04200-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=411

Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders / L. S. 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 et/ou numérique Auteurs : L. S. CHEN, Auteur ; J. MIN, Auteur ; S. ZHAO, Auteur ; Y. C. YEH, Auteur ; T. Y. 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 et/ou numérique] / L. S. CHEN, Auteur ; J. MIN, Auteur ; S. ZHAO, Auteur ; Y. C. YEH, Auteur ; T. Y. 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

Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states / S. ZHAO in Autism Research, 12-8 (August 2019)  

Public ISBD [article]  inAutism Research > 12-8 (August 2019) . - p.1162-1170 Titre : Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states Type de document : Texte imprimé et/ou numérique Auteurs : S. ZHAO, Auteur ; W. J. CHEN, Auteur ; S. U. DHAR, Auteur ; T. N. EBLE, Auteur ; O. M. KWOK, Auteur ; L. S. CHEN, Auteur Article en page(s) : p.1162-1170 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  genetic testing  health education  needs assessment  parents Index. décimale : PER Périodiques Résumé : Understanding parents' educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents' most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing. Autism Res 2019, 12: 1162-1170. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD. En ligne : http://dx.doi.org/10.1002/aur.2152 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405 [article] Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states [Texte imprimé et/ou numérique] / S. ZHAO, Auteur ; W. J. CHEN, Auteur ; S. U. DHAR, Auteur ; T. N. EBLE, Auteur ; O. M. KWOK, Auteur ; L. S. CHEN, Auteur . - p.1162-1170. Langues : Anglais (eng) in Autism Research > 12-8 (August 2019) . - p.1162-1170 Mots-clés : autism spectrum disorder  genetic testing  health education  needs assessment  parents Index. décimale : PER Périodiques Résumé : Understanding parents' educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents' most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing. Autism Res 2019, 12: 1162-1170. (c) 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD. En ligne : http://dx.doi.org/10.1002/aur.2152 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=405

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