Peter Mac Callum Cancer Centre, Victoria 8006, Australia.
Support Care Cancer. 2010 Sep;18(9):1123-36. doi: 10.1007/s00520-010-0863-4. Epub 2010 Mar 25.
The Internet is an expanding source of information and support for cancer patients and their families. Studies mostly report patient Internet use. Little is known about how carers (families/informal caregivers/friends) use the Internet and what they find useful.
The aim of this paper was to review the literature on the role of the Internet in supporting and informing carers of people with cancer.
Findings are based on a review of published studies identified from 1996-2009 Ovid MEDLINE, CINAHL, EMBASE and 2002-2009 PsycINFO, Cochrane database and Google Scholar. Key search words used were cancer, patient, information, Internet, online, web, support, family, carer, caregiver and friend.
One hundred forty-five abstracts were reviewed. Fifty-two articles were retrieved in full text. Twenty of the 52 articles were critically appraised using the appropriate Critical Appraisal Skills Programme tool. All studies retrieved were level IV evidence. Most compared carer and patient Internet use with other cancer information sources or analysed content of postings to web sites. Some reported on patient 'indirect' Internet use through carers. Heterogeneity of results related to different study aims, diversity in study tools, varying sample sizes and differing cancer populations. Broadly, Internet use can be divided into information searching and support group activity. Carers access Internet information to problem solve; however, they report doctors as their most preferred information source. They would like to have e-mail communication with Health Care Professionals to ask questions and clarify information. Participation in online support groups provides information tailored to individual needs and peer support.
The Internet may be a primary or secondary source of information and can be used to access services. Routine assessment of carers' Internet use, prescribing of Internet sites and e-mail communication with carers are possible areas for practice improvement. The current level of evidence is not ideal to influence policy development.
Research is required to evaluate carer Internet use in the rapidly changing world of health and technology. Interactive Internet applications developed specifically for carer use have the potential to prepare, inform and support the carer in their ever-expanding health care role. The impact of these services on carer quality of life also requires investigation.
互联网是癌症患者及其家属获取信息和支持的一个不断扩展的来源。研究主要报告了患者对互联网的使用。然而，对于照顾者（家庭/非正式照顾者/朋友）如何使用互联网以及他们认为哪些内容有用，我们知之甚少。
本文旨在回顾有关互联网在支持和告知癌症患者照顾者方面作用的文献。
研究结果基于对从 1996 年至 2009 年 Ovid MEDLINE、CINAHL、EMBASE 和 2002 年至 2009 年 PsycINFO、Cochrane 数据库和 Google Scholar 中确定的已发表研究的综述。使用的关键搜索词包括癌症、患者、信息、互联网、在线、网络、支持、家庭、照顾者、护理者和朋友。
共审查了 145 份摘要，检索到 52 篇全文。其中 20 篇文章使用适当的批判性评估技能计划工具进行了批判性评估。检索到的所有研究均为四级证据。大多数研究将照顾者和患者的互联网使用与其他癌症信息来源进行了比较，或分析了网站上的帖子内容。有些研究报告了通过照顾者进行的患者“间接”互联网使用。结果的异质性与不同的研究目的、研究工具的多样性、不同的样本量以及不同的癌症人群有关。广义而言，互联网的使用可分为信息搜索和支持小组活动。照顾者使用互联网获取信息以解决问题；然而，他们报告医生是他们最喜爱的信息来源。他们希望通过电子邮件与医疗保健专业人员进行交流，以提出问题并澄清信息。参与在线支持小组提供了针对个人需求的信息和同行支持。
互联网可能是信息的主要或次要来源，并且可以用于访问服务。改善实践的可能领域包括常规评估照顾者的互联网使用、规定互联网网站和与照顾者进行电子邮件通信。目前的证据水平还不足以影响政策制定。
需要研究在健康和技术快速变化的世界中照顾者的互联网使用情况。专门为照顾者开发的交互式互联网应用程序有可能使照顾者在不断扩大的医疗保健角色中做好准备、知情并得到支持。这些服务对照顾者生活质量的影响也需要调查。
