Center for the Study of Chronic Illness and Disability, George Mason University, Fairfax, Virginia.
American Institutes for Research, Washington, DC.
Top Spinal Cord Inj Rehabil. 2021 Fall;27(4):79-98. doi: 10.46292/sci20-00032. Epub 2021 Aug 1.
To identify the information networks of caregivers and individuals with spinal cord injury (SCI) and how the health information is accessed and used. For this qualitative study, participants from the United States were recruited through hospital listservs, websites, social media, and word of mouth to participate in a phone interview. Fourteen individuals living with a traumatic SCI and 18 caregivers of individuals living with a traumatic SCI were interviewed using a semi-structured interview guide. The interviews were transcribed verbatim, coded using NVivo, and analyzed using qualitative thematic methods. Participants reported that medical resources such as SCI specialists were considered the most reliable sources, but due to accessibility barriers the Internet was used the most. The Internet and social resources, such as online and in-person support groups, provided beneficial content information and emotional support, but they posed credibility concerns and left participants feeling unsure of reliability. Information gaps such as lack of education on basic care practices during the transition from acute to chronic care were identified by the participants. Because SCI is an overwhelming experience, it is difficult for patients to retain information in the initial acute care phase, leading to gaps in knowledge about long-term care. Patients are concerned about the reliability of online sources of information; therefore, there is a need for new methods of SCI information dissemination. Potentially, using primary care providers as conduits for information distribution might improve access to reliable long-term SCI information for caregivers and patients.
确定照顾者和脊髓损伤（SCI）个体的信息网络，以及他们如何获取和使用健康信息。本研究采用定性方法，参与者来自美国，通过医院名录、网站、社交媒体和口碑招募，以参与电话访谈。使用半结构化访谈指南对 14 名外伤性 SCI 幸存者和 18 名外伤性 SCI 照顾者进行访谈。访谈内容逐字转录，使用 NVivo 进行编码，并采用定性主题方法进行分析。参与者报告称，医疗资源（如 SCI 专家）被认为是最可靠的信息来源，但由于获取障碍，互联网是最常用的信息来源。互联网和社交媒体资源（如在线和面对面的支持小组）提供了有益的内容信息和情感支持，但也存在可信度问题，让参与者对信息的可靠性感到不确定。参与者还发现存在信息空白，例如在从急性护理向慢性护理过渡期间缺乏基本护理实践方面的教育。由于 SCI 是一种压倒性的体验，患者在初始急性护理阶段很难保留信息，导致对长期护理的知识存在空白。患者担心在线信息源的可靠性；因此，需要新的 SCI 信息传播方法。可能的方法是利用初级保健提供者作为信息传播的渠道，以改善照顾者和患者获取可靠的长期 SCI 信息的机会。
