College of Information and Communication, School of Information Science, The University of South Carolina Davis College, South Carolina, USA.
J Am Med Inform Assoc. 2022 Jan 12;29(2):239-248. doi: 10.1093/jamia/ocab234.
This qualitative research examines how transgender and gender nonbinary (T/GNB) persons from South Carolina navigate informational barriers within healthcare systems. This navigation can be described through the lens of information practices, or how T/GNB participants create, seek, use, and share information to achieve desired healthcare outcomes. Special focus is given to the roles of Information and Communication Technologies (ICTs) in shaping these practices.
The research utilizes participant data from semistructured interviews and focus groups conducted with 26 T/GNB individuals focusing on their health information practices. Data analysis utilized emic/etic coding and the constant comparative method to identify themes describing transexclusionary information barriers and respondent ICT-led information practices.
Findings note healthcare systems producing cisnormativity by design resulting in T/GNB individuals viewing healthcare spaces as exclusionary. Exclusionary barriers included over reliance on medical, expert authority ignoring T/GNB embodiment, and a lack of contextual perspective to identities. In response, T/GNB seek, create, use, and share information via ICTs to challenge exclusionary practices.
T/GNB ICT use addresses systemic barriers within healthcare systems suggesting a need to reframe healthcare systems through the lens of design justice, one that values T/GNB agency in understanding and producing health knowledge.
While many healthcare providers are not intentionally being transexclusionary, the design of healthcare information systems rely on cisnormative values, thus excluding many T/GNB from accessing healthcare in comfortable and safe ways. Shifting toward the values and practices of T/GNB as informed by ICT use will afford healthcare providers ways to undo barriers to care.
本定性研究考察了南卡罗来纳州的跨性别和性别非二元（T/GNB）个体如何在医疗保健系统中克服信息障碍。这种导航可以通过信息实践的视角来描述，或者 T/GNB 参与者如何创建、寻求、使用和共享信息以实现所需的医疗保健结果。特别关注信息和通信技术（ICT）在塑造这些实践中的作用。
该研究利用了 26 名 T/GNB 个体的参与数据，这些个体来自半结构化访谈和焦点小组，重点关注他们的健康信息实践。数据分析采用了内外编码和恒比比较法，以确定描述跨性别排斥信息障碍和受访者 ICT 主导信息实践的主题。
研究结果指出，医疗保健系统通过设计产生了顺性别规范，导致 T/GNB 个体将医疗保健空间视为排斥性的。排斥性障碍包括过度依赖医学、专家权威忽视 T/GNB 体现以及缺乏对身份的背景视角。作为回应，T/GNB 通过 ICT 寻求、创建、使用和共享信息，以挑战排斥性实践。
T/GNB 对 ICT 的使用解决了医疗保健系统中的系统性障碍，这表明需要通过设计正义的视角重新构建医疗保健系统，即重视 T/GNB 在理解和产生健康知识方面的代理权。
虽然许多医疗保健提供者并非故意排斥跨性别者，但医疗保健信息系统的设计依赖于顺性别规范，从而使许多 T/GNB 无法以舒适和安全的方式获得医疗保健。通过 T/GNB 对 ICT 使用的价值和实践进行转变，将为医疗保健提供者提供消除护理障碍的方法。
