Benham-Hutchins Marge, Brown Sharon A, Donovan Erin E, Guevara Henry, Johnson Alisha H
School of Nursing, University of Texas at Austin, Austin, TX, United States.
Center for Health Communication, Moody College of Communication and Dell Medical School, University of Texas at Austin, Austin, TX, United States.
J Particip Med. 2018 Dec 6;10(4):e10782. doi: 10.2196/10782.
Self-management of chronic conditions, such as cancer or diabetes, requires the coordination of care across multiple care settings. Current patient-centered, hospital-based care initiatives, including bedside nursing handoff and multidisciplinary rounds, often focus on provider information exchange and roles but fall short of the goals of participatory medicine, which recognize the right of patients to partner in their own care and play an active role in self-management.
This study aimed to elicit Spanish-speaking Hispanic patients' perspectives on the exchange and sharing of information during hospitalization.
This exploratory pilot study incorporated a qualitative descriptive approach by using Spanish language focus groups, posthospitalization, to determine patient-identified information needs during hospitalization.
Participants preferred paper-based Spanish language medical information. Doctors and nurses were key information providers and communicated with participants verbally, usually with the assistance of a translator. Participants expressed a desire to be informed about medication and treatments, including side effects and why there were changes in medication during hospitalization. In addition, they expressed interest in knowing about the progress of their condition and when they could expect to go home. Emotional readiness to receive information about their condition and prognosis was identified as an individual barrier to asking questions and seeking additional information about their condition(s).
Overall, participants shared positive experiences with providers during hospitalization and the usefulness of self-care instructions. Language was not recognized as a barrier by any of the participants. Nevertheless, future research on the influence of emotional readiness on the timing of medical information is needed.
慢性病（如癌症或糖尿病）的自我管理需要在多个护理环境中协调护理。当前以患者为中心的医院护理举措，包括床边护理交接和多学科查房，通常侧重于医护人员之间的信息交流和职责，但未达到参与式医疗的目标，参与式医疗承认患者有权参与自身护理并在自我管理中发挥积极作用。
本研究旨在了解讲西班牙语的西班牙裔患者对住院期间信息交流与共享的看法。
这项探索性试点研究采用定性描述方法，通过使用西班牙语焦点小组，在患者出院后确定患者在住院期间确定的信息需求。
参与者更喜欢纸质的西班牙语医疗信息。医生和护士是关键的信息提供者，通常在翻译的协助下与参与者进行口头沟通。参与者表示希望了解药物和治疗情况，包括副作用以及住院期间药物为何发生变化。此外，他们有兴趣了解自己病情的进展以及何时可以出院。对了解自身病情和预后信息的情感准备程度被确定为患者提问和寻求更多病情信息的个人障碍。
总体而言，参与者在住院期间与医护人员分享了积极的经历以及自我护理指导的有用性。没有一位参与者认为语言是障碍。然而，未来需要研究情感准备程度对医疗信息获取时机的影响。
