"It Makes People Uneasy, but It's Necessary. #BTSM": Using Twitter to Explore Advance Care Planning among Brain Tumor Stakeholders
"It Makes People Uneasy, but It's Necessary. #BTSM": Using Twitter to Explore Advance Care Planning among Brain Tumor Stakeholders
复制标题
DOI：
10.1089/jpm.2019.0077
复制
发表时间：
2019-06-06
影响因子：
2.8
通讯作者：
Lum, Hillary D.
中科院分区：
文献类型：
--
作者：
Cutshall, Nathan R.;Kwan, Bethany M.;Lum, Hillary D.
背景：在脑肿瘤患者的病程中，预先护理计划（ACP）往往发生得太晚。此外，脑肿瘤利益相关者对ACP的看法也没有得到很好的描述。我们回顾了一个社交媒体推特聊天，以了解脑肿瘤利益相关者在ACP方面遇到的障碍。方法：采用定性方法对脑肿瘤利益相关者的推特聊天（实时虚拟讨论）进行分析。这一长达1小时的推特聊天于2018年1月由患者运营的推特社区“脑瘤社交媒体聊天”（@BTSMchat）主持。参与者通过在推特上加上“#BTSM”标签，对ACP的四个问题进行了反思。独特的推文和利益相关者类型（即患者，护理人员，倡导者或组织成员，临床医生或研究人员，或@BTSMchat负责人）被编码。对推特聊天进行定性分析，以确定关键主题。结果：来自四个国家的52名参与者总共贡献了336条推文。大多数参与者是患者（患有脑肿瘤的人），其次是临床医生或研究人员，以及倡导者或组织。关于脑肿瘤利益相关者对ACP的看法，出现了三个关键主题：(1)态度障碍阻碍了对死亡的讨论；(2)需要确保自己的声音被听到；(3) Goldilock担心ACP时机的方法要么太早，要么太晚。结论：包括脑肿瘤患者在内的各种利益相关者通过tweet聊天分享了对ACP的看法，并强调了重要的挑战和机遇。Twitter是患者、临床医生和倡导者相互交流的新途径，可以更好地了解彼此对ACP的看法。
Background: Advance care planning (ACP) often occurs too late in the disease course of those who are affected by brain tumors. Furthermore, the perspectives of brain tumor stakeholders on ACP are not well described. We reviewed a social media tweet chat to understand barriers to ACP experienced by brain tumor stakeholders. Methods: We used qualitative methods to analyze a tweet chat (real-time virtual discussion) of brain tumor stakeholders. The one-hour tweet chat was hosted by Brain Tumor Social Media chat (@BTSMchat), a patient-run Twitter community, in January 2018. Participants reflected on four questions about ACP by including the hashtag "#BTSM" in tweets. Unique tweets and stakeholder type (i.e., patient, caregiver, advocate or organization member, clinician or researcher, or @BTSMchat leader) were coded. The tweet chat was qualitatively analyzed to identify key themes. Results: A total of 52 participants from four countries contributed 336 tweets. Most participants were patients (people with brain tumors), followed by clinicians or researchers, and advocates or organizations. Three key themes emerged regarding brain tumor stakeholder perspectives about ACP: (1) attitudinal barriers prevent discussions of death; (2) need to ensure one's voice is heard; and (3) Goldilock's approach to timing-fearing ACP is too early or too late. Conclusions: Various stakeholders, including people with brain tumors, shared perspectives on ACP through a tweet chat and highlighted important challenges and opportunities. Twitter is a new avenue for patients, clinicians, and advocates to engage with each other to better understand each other's perspectives related to ACP.