Autism genetic testing information needs among parents of affected children: A qualitative study

Li, Ming; Amuta, Ann O.; Liu, Xu; Dhar, Shweta U.; Talwar, Divya; Jung, Eunju; Chen, Lei‐Shih

doi:10.1016/j.pec.2015.12.023

Cited by 22 publications

(26 citation statements)

References 32 publications

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“…Thus, physicians may consider providing online education materials and resources, along with regular practice, to address parents' preferred genetic testing topics before and after a medical visit to help them better understand this testing. Of note, our result is in line with the previous qualitative study in the U.S. [Li et al, ]. A related study conducted in Taiwan [Chen et al, ], however, showed that most Taiwanese parents' preferred health education brochures.…”

Section: Discussionsupporting

confidence: 92%

“…As this is a quantitative and nationwide study, our findings may provide a better representation of parents' preferences in health education regarding genetic testing for children with ASD than the past research. In particular, while the previous qualitative study [Li et al, ] identified cost of genetic testing as parents' most interested topic, our study showed that the majority of the participants favored the accuracy of genetic testing as the main subject. This topic (the accuracy of genetic testing for children with ASD) is of great importance, as the clinical diagnostic yield of genetic testing varies due to different testing methods [Rossi et al, ; Schaefer & Mendelsohn, ; Tammimies et al, ].…”

Section: Discussioncontrasting

confidence: 67%

“…This area of research is of great importance, as understanding the educational needs for genetic testing is not only essential for developing tailored, evidence‐based health education programs and/or materials for physician to use and educate parents of children with ASD in clinical settings, but also in assisting parents of children with ASD in making informed decisions related to this testing. Only one qualitative study in the U.S. [Li et al, ] has assessed information needs regarding genetic testing among parents of children with ASD and provided an initial understanding of parents' education needs in this area. However, those findings may be limited due to its small sample size, state‐specific data, and lack of quantitative perspectives.…”

Section: Introductionmentioning

confidence: 99%

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Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states

et al. 2019

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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.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.

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Section: Discussionsupporting

confidence: 92%

Section: Discussioncontrasting

confidence: 67%

Section: Introductionmentioning

confidence: 99%

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Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states

et al. 2019

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“…To our knowledge, only one study has begun to look at potential delivery methods aimed to increase parental knowledge about ASD genetic testing. Parents reported their preferred medium for learning about ASD genetic testing was (1) web‐based education ( n = 18, 43%), (2) workshops or seminars ( n = 15, 36%), (3) brochures/flyers ( n = 13, 31%), and (4) video or CD ( n = 4, 10%) (Li et al., ). The field of clinical genetics would benefit from well‐designed educational programs aimed at education and facilitation of shared decision‐making.…”

Section: Discussionmentioning

confidence: 99%

Autism spectrum disorder and genetic testing: Parental perceptions and decision‐making

Hanish

Cohen

Starr

2018

Specialist Pediatric Nursing

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“…Based on past research [19,[29][30][31]35,[37][38][39][40][41][42][43][44], we developed a survey in Mandarin to examine factors associated with the mothers' intention to undergo PGT for detecting ASD susceptibility genes within their fetuses ("If you are pregnant, how likely are you to undergo PGT for detecting ASD susceptibility genes?") and their abortion decision-making in a hypothetical scenario ("If testing results indicate that you might have a fetus with ASD, what would be your choice?").…”

Section: Methodsmentioning

confidence: 99%

Autism Spectrum Disorders: Prenatal Genetic Testing and Abortion Decision-Making among Taiwanese Mothers of Affected Children

Chen

Zhao

Huang

et al. 2020

IJERPH

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With the rapid growing rate of autism spectrum disorders (ASDs), prenatal genetic testing (PGT) has been offered to detect various genomic disorders, including ASD, in Taiwan. However, disparities exist in this area, as there is limited research on factors associated with PGT utilization and relevant decision-making that may guide the regulations and ethical guidelines for culturally appropriate PGT services in Taiwan. This study proposed a comprehensively integrated theoretical framework for examining the intention to undergo PGT to detect ASD susceptibility genes and subsequent abortion decision-making among Taiwanese mothers of children affected by ASD. Survey data from 333 mothers of children with ASD in 236 elementary schools with special education services in Taiwan were collected and analyzed using structural equation modeling. Approximately two-thirds of the participants (66.6%) would undergo PGT to detect ASD susceptibility genes; more than half (53.1%) would terminate the hypothetically ASD-affected pregnancy. Abortion intention was associated with age, religion, attitudes toward PGT for detecting ASD susceptibility genes, and willingness to undergo such PGT. This study explores the potential impacts of PGT on Taiwanese society, and the findings are applicable to countries heavily influenced by Chinese culture, areas with Asian immigrants, and Western countries with such PGT services and/or research available.

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Autism genetic testing information needs among parents of affected children: A qualitative study

Cited by 22 publications

References 32 publications

Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states

Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states

Autism spectrum disorder and genetic testing: Parental perceptions and decision‐making

Autism Spectrum Disorders: Prenatal Genetic Testing and Abortion Decision-Making among Taiwanese Mothers of Affected Children

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