寻找答案:有亨廷顿舞蹈病风险的年轻人寻求信息

IF 2.1 Q3 NEUROSCIENCES
Colby L. Chase, B. Yashar, Chandler Swope, R. Albin, W. Uhlmann
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引用次数: 0

摘要

背景:寻求健康信息是全球范围内具有个人或家族病史(包括亨廷顿舞蹈病(HD))的个体使用的应对策略。目的:我们试图确定在HD风险中长大的年轻人的信息寻求行为。方法:从HD支持组织招募年龄在18-25岁的参与者。一项包含96个项目的在线调查评估了信息寻求的动机和时间,以及获取的信息主题、来源和需求。结果:50名在HD风险中长大的年轻人(平均年龄22.2岁)有反应。在很多家庭中,HD一般被当作秘密(35.4%)或谈论但难以提起(43.8%)。大多数(78.0%)在15岁之前意识到家庭成员患有HD。只有少数人(7.1%)在披露时获得了信息资源。大多数人(68.1%)首先在网上独立寻找信息,其中一半在披露后一周内。受访者希望了解HD对其个人生活和家庭成员的潜在影响,获取有关HD的一般信息,并了解治疗和研究。大多数人寻求关于临床特征和遗传的信息,bb10 %的人对症状和个人风险的信息感兴趣,bb10 %的人对是否有孩子感兴趣。结论:当年轻人第一次被告知他们的家庭有HD时,他们获得的信息有限,导致他们独立地,主要是在网上寻找信息。资讯是用来建立有关爱滋病的知识,以协助应付和规划人生。医疗保健提供者可以引导年轻人获得可靠的资源,并指导父母与孩子交谈,以确保满足信息需求。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Searching for Answers: Information-Seeking by Young People At-Risk for Huntington’s Disease
Background: Health information-seeking is a coping strategy used globally by individuals with a personal or family history of a medical condition, including Huntington’s disease (HD). Objective: We sought to ascertain information-seeking practices of young people who grew up at-risk for HD. Methods: Participants ages 18–25 were recruited from HD support organizations. An online 96-item survey assessed information-seeking motivations and timing as well as information topics accessed, sources, and needs. Results: Fifty young adults (mean age 22.2 years) who grew up at-risk for HD responded. HD had been generally kept a secret (35.4%) or talked about but difficult to bring up (43.8%) in many families. Most (78.0%) became aware of HD in their family before age 15. Few (7.1%) received information resources at the time of disclosure. Most (68.1%) first sought information independently online, half within a week of disclosure. Respondents were motivated to understand the potential impact of HD on their personal lives and family members, obtain general information about the condition, and learn about treatments and research. Most sought information on clinical features and inheritance with > 80% interested in information on symptoms and personal risk and > 70% about having children. Conclusion: Limited information is provided to young people when first informed about HD in their families leading to independent, mostly online information-seeking. Information is used to build knowledge about HD to facilitate coping and life planning. Healthcare providers can direct young people to reliable resources and guide parents in talking with children to ensure that information needs are met.
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来源期刊
CiteScore
4.80
自引率
9.70%
发文量
60
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