Data · collection · 2018
Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders
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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.
Description
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.
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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.
Links
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- Repository landing page figshare.com/collections/Information_needs_in_genetic_testing_A_needs_asses… ↗
landing page · from DataCite
- DOI doi.org/10.25384/sage.c.4188878 ↗
DOI / persistent id · from DataCite
Documentation and papers
- CC BY 4.0 creativecommons.org/licenses/by/4.0 ↗
license · from DataCite
- IsSupplementTo 10.1177/1362361318778903 doi.org/10.1177/1362361318778903 ↗
publication · from DataCite
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- DataCite API api.datacite.org/dois/10.25384/sage.c.4188878 ↗
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- DataCite Commons commons.datacite.org/doi.org/10.25384/sage.c.4188878 ↗
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Topics
- Stated by source
- Clinical medicine · Educational sciences · Health sciences · Psychology
Related
Provenance · 1 source records, 11 field assertions
| Source | Key | Last seen | Raw |
|---|---|---|---|
| DataCite | 10.25384/sage.c.4188878 | 12 d ago | JSON v1 |
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|---|---|---|---|
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| concepts[field].fos:clinical-medicine | source · DataCite | connector:datacite@1.0.0 | |
| concepts[field].fos:educational-sciences | source · DataCite | connector:datacite@1.0.0 | |
| concepts[field].fos:health-sciences | source · DataCite | connector:datacite@1.0.0 | |
| concepts[field].fos:psychology | source · DataCite | connector:datacite@1.0.0 | |
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| title | source · DataCite | connector:datacite@1.0.0 | /data/attributes/titles/0/title |
| updated_date | source · DataCite | connector:datacite@1.0.0 |