Simon Christian, Schramm Sarah
Department of Bioethics, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH, 44106-4976, USA.
Med Health Care Philos. 2008 Sep;11(3):337-41. doi: 10.1007/s11019-008-9127-1. Epub 2008 Feb 19.
The normative dimensions of Internet use among patients and their families have not been studied in much depth in the field of clinical ethics. This study considers cancer-related Internet use among families and friends of cancer patients, and how that use of the Internet may affect patients and patient care. Interviews were conducted with 120 cancer patients, most of whom (76%) reported that family, friends, and others in their social network used the Internet in some way related to the patient's cancer. Many patients (73%) did not request this online help from their social networks, yet found it helpful and comforting nonetheless. Other patients were less positive about the helpfulness of the online efforts of friends and relatives. A significant proportion of patients (39%) also felt that the online information they received was prescreened or edited in some way. Very few patients recalled that their clinicians ever discussed these and other issues with them. The study illustrates that indirect Internet use is a central feature of the cancer experience. In contrast to other literature in this area, the study suggests that indirect Internet use may have normatively positive and negative implications for patients. These implications point towards the importance of studying and understanding indirect Internet use-and Internet use in general-in the field of clinical ethics.
在临床伦理领域,尚未对患者及其家属使用互联网的规范性维度进行深入研究。本研究关注癌症患者的家人和朋友与癌症相关的互联网使用情况,以及这种互联网使用方式如何影响患者及患者护理。研究人员对120名癌症患者进行了访谈,其中大多数患者(76%)报告称,其社交网络中的家人、朋友及其他人以某种与患者癌症相关的方式使用了互联网。许多患者(73%)并未向其社交网络请求这种在线帮助,但仍觉得它很有帮助且令人安心。其他患者对亲友在线努力的帮助性则没那么乐观。相当一部分患者(39%)还认为他们收到的在线信息在某种程度上经过了预先筛选或编辑。很少有患者记得他们的临床医生曾与他们讨论过这些及其他问题。该研究表明,间接使用互联网是癌症经历的一个核心特征。与该领域的其他文献不同,该研究表明间接使用互联网可能对患者产生规范性的积极和消极影响。这些影响表明在临床伦理领域研究和理解间接使用互联网——以及一般意义上的互联网使用——的重要性。