"Before Facebook and before social media...we did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process
"Before Facebook and before social media...we did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process
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DOI：
10.1007/s12687-018-0400-6
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发表时间：
2019-07-01
影响因子：
1.9
通讯作者：
Tabor, Holly K.
中科院分区：
文献类型：
--
作者：
Barton, Krysta S.;Wingerson, Andrew;Tabor, Holly K.
接受临床基因检测的儿童的父母在检测过程的不同阶段有重要的信息和情感支持需求。我们分析了父母对使用互联网和社交媒体来帮助满足这些需求的看法。我们采访了20名接受临床基因检测的儿童的父母，并分析了成绩单，以确定与互联网和社交媒体使用相关的主题。父母描述了在基因检测过程的三个阶段使用互联网搜索信息：检测前，等待结果返回，结果返回后。每个阶段对应不同的信息真空和需求。父母还描述了使用特定条件的Facebook群组来更多地了解他们孩子的状况，并以非社交媒体方法具有挑战性的方式找到具有类似经历的家庭的支持网络。互联网和社交媒体在满足儿科基因检测的信息和支持需求方面发挥着重要作用，特别是对于罕见疾病。提供者应考虑在测试过程的不同阶段让父母参与他们使用互联网和社交媒体的情况，并考虑将他们引导到经过审查的网站和团体，作为共同决策的一部分，并提高满意度和结果。
Parents of children who undergo clinical genetic testing have significant informational and emotional support needs at different stages of the testing process. We analyzed parent views about use of both the internet and social media to help meet these needs. We interviewed 20 parents of children who underwent clinical genetic testing and analyzed transcripts to identify themes related to internet and social media use. Parents described using the internet to search for information at three stages of the genetic testing process: before testing, pending results return, and after results return. Each stage corresponded to different information vacuums and needs. Parents also described using condition-specific Facebook groups to learn more about their child's condition and to find support networks of families with similar experiences in ways that were challenging using non-social media approaches. Both the internet and social media play important roles in meeting informational and support needs in pediatric genetic testing, especially for rare conditions. Providers should consider engaging parents at different stages of the testing process about their use of the internet and social media, and consider directing them to vetted sites and groups as part of shared decision making and to improve satisfaction and outcomes.