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亨廷顿病的基因检测:对在线支持社区信息的主题分析。

Genetic testing for Huntington's disease: A thematic analysis of online support community messages.

机构信息

University of Nottingham, UK.

出版信息

J Health Psychol. 2021 Mar;26(4):580-594. doi: 10.1177/1359105319826340. Epub 2019 Jan 30.

Abstract

Huntington's disease is a fatal late-onset genetic illness that causes motor, cognitive and psychiatric disorders. Individuals considering genetic testing may benefit from online social support. This study investigates how genetic testing is discussed within health forums. A total of 337 messages written by 58 individuals were analysed using deductive thematic analysis. Discussions examined three themes: deciding to be tested (enquiring about symptoms and starting a new family), preparing for the test (information seeking and attending appointments) and receiving the results (positive and negative results). Forums can reduce the uncertainty of ambiguous symptoms and provide ongoing personalised support before, during and after a genetic test.

摘要

亨廷顿病是一种致命的迟发性遗传疾病,会导致运动、认知和精神障碍。考虑进行基因检测的个体可能会受益于在线社交支持。本研究调查了基因检测是如何在健康论坛中进行讨论的。使用演绎主题分析对 58 名个体撰写的 337 条消息进行了分析。讨论探讨了三个主题:决定接受测试(询问症状和开始新的家庭)、准备测试(信息搜索和预约)以及接受测试结果(阳性和阴性结果)。论坛可以减少模糊症状的不确定性,并在基因检测之前、期间和之后提供持续的个性化支持。

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