使用基于网络的信息导航癌症之旅:基于癌症患者和非正式护理人员生活经验的理论与基于网络的内容设计的含义。

IF 3.3 Q2 ONCOLOGY JMIR Cancer Pub Date : 2023-05-17 DOI:10.2196/41740
Maclean Thiessen, Shelly Raffin Bouchal, Patricia A Tang, Shane Sinclair
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引用次数: 1

摘要

背景:互联网是许多非正式护理人员和癌症患者的重要信息来源。更好地了解个人如何使用互联网来满足他们的信息需求,对于指导干预措施的发展非常重要。目的:本研究的目的是发展一种理论,描述为什么癌症患者使用互联网查找信息,描述现有网络内容面临的挑战,并为网络内容设计提供建议。方法:从加拿大阿尔伯塔省招募有癌症病史的成年人(≥18岁)或非正式照顾者。在提供知情同意后,参与者通过数字记录的一对一半结构化访谈、焦点小组、基于网络的讨论板和电子邮件进行参与。经典扎根理论指导了研究过程。结果:共有21名参与者参加了23次一对一访谈和5个焦点小组。平均年龄53岁(SD 15.3)。乳腺癌、妇科和血液癌是最常见的癌症类型(4/21,各占19%)。总共有67%(14/21)的患者、29%(6/21)的非正式护理人员和5%(1/21)的报告两种角色的个人参与了研究。参与者在他们的癌症旅程中经历了许多新的挑战,并利用互联网更好地了解他们。对于每个挑战,互联网搜索试图解决3个关键导向问题中的一个或多个:为什么会发生挑战,期望什么,以及管理它的选择。更好的定向导致了身体和心理健康的改善。布局良好、简洁、不分散注意力、解决关键定向问题的内容被认为是最有助于定向的内容。鼓励网络内容的创作者1)清楚地识别癌症挑战和内容所针对的人群,以及任何潜在的令人不安的信息的存在;2)提供不同格式的内容版本,包括打印友好、音频、视频和替代语言;3)说明内容的创造者,包括所涉及的个人、组织和过程;4)在重点导向问题解决后放置超链接;5)确保内容被搜索引擎(如Google)优化发现。结论:网络内容对许多癌症患者起着至关重要的作用。鼓励临床医生采取积极措施,帮助患者和非正式护理人员找到满足其信息需求的网络内容。内容创作者也有责任确保他们创造的内容能够帮助而不是阻碍那些正在经历癌症之旅的人。需要进行研究,以更好地了解癌症患者面临的许多挑战,包括他们是如何在时间上相关的。此外,如何针对特定的癌症挑战和人群优化基于网络的内容应被视为未来研究的重要领域。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Navigating the Cancer Journey Using Web-Based Information: Grounded Theory Emerging From the Lived Experience of Cancer Patients and Informal Caregivers With Implications for Web-Based Content Design.

Background: The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development.

Objective: The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design.

Methods: Adults (≥18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures.

Results: A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19% each). In total, 67% (14/21) of patients, 29% (6/21) of informal caregivers, and 5% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google).

Conclusions: Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research.

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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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