寻找答案：亨廷顿病高危年轻人的信息寻求行为。

Searching for Answers: Information-Seeking by Young People At-Risk for Huntington's Disease.

机构信息

Department of Human Genetics, University of Michigan, Ann Arbor, MI, USA.

Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.

出版信息

J Huntingtons Dis. 2022;11(3):337-346. doi: 10.3233/JHD-210523.

DOI:10.3233/JHD-210523

PMID:35570496

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9484118/

Abstract

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.

摘要

背景

健康信息寻求是一种应对策略，在个人或家族有医疗条件史的情况下，包括亨廷顿病（HD），全球个体都会使用这种策略。

目的

我们旨在确定在成长过程中存在 HD 风险的年轻人的信息寻求行为。

方法

参与者年龄在 18-25 岁之间，从 HD 支持组织招募。一项在线 96 项调查评估了信息寻求的动机和时间，以及访问的信息主题、来源和需求。

结果

50 名成年早期（平均年龄 22.2 岁）有 HD 风险的年轻人做出了回应。在许多家庭中，HD 通常被保密（35.4%）或被提及但难以提及（43.8%）。大多数人（78.0%）在 15 岁之前在家庭中了解到 HD。很少有人（7.1%）在披露时收到信息资源。大多数人（68.1%）首先在网上独立寻求信息，一半是在披露后的一周内。受访者的动机是了解 HD 对个人生活和家庭成员的潜在影响，获得有关该疾病的一般信息，以及了解治疗和研究。大多数人寻求有关临床特征和遗传的信息，其中>80%对症状和个人风险的信息感兴趣，>70%对生育子女的信息感兴趣。