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年轻乳腺癌女性在线信息和社交媒体支持中实际获得的内容与期望获得的内容的比较。

What Young Women with Breast Cancer Get Versus What They Want in Online Information and Social Media Supports.

机构信息

1 Department of Surgery, Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, Canada.

2 Institute of Health Policy, Management, and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada.

出版信息

J Adolesc Young Adult Oncol. 2019 Jun;8(3):320-328. doi: 10.1089/jayao.2018.0125. Epub 2019 Jan 16.

Abstract

Young women are high users of social media (SM), but information is lacking on whether online supports including SM meet the needs of young women (<40 years) with breast cancer (YWBC). YWBC are a vulnerable population who experience many psychosocial challenges alongside cancer diagnosis and treatment. This study aimed to gather data on what YWBC get versus what they want in online support. Semi-structured interviews explored YWBC's perceptions and use of online information/SM, including visions for ideal support. YWBC between the ages of 18-40 were recruited via two urban oncology clinics. Recruitment continued until redundancy of responses was achieved. Thirteen YWBC participated in the study. Some reported benefits of online supports included connection with similar others, emotional support and ease of use. These benefits were balanced by drawbacks, such as a lack of appropriate/credible information and/or distressing information. Respondents spontaneously mentioned coping strategies such as managing information exposure and regulating SM use to mitigate against harms of online supports. Collectively, participants described nine facets of an ideal online support hub, which could function as a one stop shop for informational, practical and emotional supports for YWBC. Developing a multifunction online support hub may help women to find credible and useful information, rapidly, and address current limitations of online supports.

摘要

年轻女性是社交媒体(SM)的高频使用者,但关于在线支持是否满足乳腺癌年轻女性(YWBC)的需求的信息却很少。YWBC 是一个弱势群体,她们在癌症诊断和治疗过程中会经历许多心理社会挑战。本研究旨在收集关于 YWBC 在在线支持中获得的信息与他们想要的信息之间的差距的数据。半结构化访谈探讨了 YWBC 对在线信息/SM 的看法和使用情况,包括对理想支持的设想。通过两家城市肿瘤诊所招募年龄在 18-40 岁之间的 YWBC。招募工作一直持续到获得冗余的回复。13 名 YWBC 参加了这项研究。一些人报告说,在线支持的好处包括与相似的人建立联系、获得情感支持和易于使用。但这些好处也存在一些弊端,例如缺乏适当/可信的信息和/或令人痛苦的信息。受访者自发地提到了一些应对策略,例如管理信息的暴露和调节 SM 的使用,以减轻在线支持的危害。总的来说,参与者描述了理想在线支持中心的九个方面,该中心可以作为为 YWBC 提供信息、实践和情感支持的一站式服务。开发一个多功能的在线支持中心可能有助于女性快速找到可信且有用的信息,并解决当前在线支持的局限性。

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