使用社交媒体表达和处理先天性角化障碍的医疗不确定性:内容分析》(The Use of Social Media to Expression and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis)。

IF 3.5 Q1 HEALTH CARE SCIENCES & SERVICES
JMIR infodemiology Pub Date : 2024-01-15 DOI:10.2196/46693
Emily Pearce, Hannah Raj, Ngozika Emezienna, Melissa B Gilkey, Allison J Lazard, Kurt M Ribisl, Sharon A Savage, Paul Kj Han
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引用次数: 0

摘要

背景:社交媒体有可能为罕见病社区提供社会支持;然而,人们对利用社交媒体表达医疗不确定性知之甚少,而医疗不确定性是罕见病的常见特征:本研究旨在评估在先天性角化不良(一种罕见的易患癌症的遗传性骨髓衰竭和端粒生物学疾病(TBD))的背景下,社交媒体对医疗不确定性的表达:我们对该罕见病患者权益组织 Telomere 团队管理的 Facebook 和 Twitter 上与不确定性相关的帖子进行了内容分析。我们评估了不确定性相关帖子的频率、不确定性来源、问题和管理以及不确定性与社会支持之间的关联:在所有 TBD 社交媒体平台上,45.98%(1269/2760)的帖子与不确定性有关。Telomere 团队在 Twitter 上发布的与不确定性相关的帖子主要集中在科学(306/434,70.5%)或个人(230/434,53%)问题上,反映了由概率、模糊性或复杂性引起的不确定性。在 Facebook 社区小组中,患者和护理人员对话中与不确定性相关的帖子主要集中在科学问题(429/511,84%)、个人问题(157/511,30.7%)和实际问题(114/511,22.3%)上,其中许多都与预后未知因素有关。两个平台都提出了以信息共享和社区建设为重点的不确定性管理策略。与 Facebook 社区组相比(χ21=3.9;P=.05),Twitter 上反映以反应为中心的不确定性管理策略(如情绪调节)的帖子更多,而 Facebook 社区组与 Twitter 相比(χ21=55.1;P=.05),反映以不确定性为中心的管理策略(如订购信息)的帖子更多:尽管不确定性是 TBDs 中普遍存在的多因素问题,但我们的研究结果表明,TBD 社交媒体上对医疗不确定性的讨论主要限于有关科学、个人或实际问题的简短交流,而非持续的支持性对话。不确定性相关对话的性质也因用户群体而异:患者和护理人员使用社交媒体主要是为了讨论科学上的不确定性(例如,关于预后)、建立社会联系或交流关于获取和组织医疗护理的建议,而 Telomere 团队则使用社交媒体来表达科学和个人的不确定性问题以及解决不确定性对情绪的影响。女性家长在 TBD 社交媒体上的参与度较高,这表明与其他群体相比,母亲在不确定性管理方面可能承担着更大的负担。还需要进一步研究,以了解社交媒体参与管理 TBD 社区医疗不确定性的动态。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis.

Background: Social media has the potential to provide social support for rare disease communities; however, little is known about the use of social media for the expression of medical uncertainty, a common feature of rare diseases.

Objective: This study aims to evaluate the expression of medical uncertainty on social media in the context of dyskeratosis congenita, a rare cancer-prone inherited bone marrow failure and telomere biology disorder (TBD).

Methods: We performed a content analysis of uncertainty-related posts on Facebook and Twitter managed by Team Telomere, a patient advocacy group for this rare disease. We assessed the frequency of uncertainty-related posts, uncertainty sources, issues, and management and associations between uncertainty and social support.

Results: Across all TBD social media platforms, 45.98% (1269/2760) of posts were uncertainty related. Uncertainty-related posts authored by Team Telomere on Twitter focused on scientific (306/434, 70.5%) or personal (230/434, 53%) issues and reflected uncertainty arising from probability, ambiguity, or complexity. Uncertainty-related posts in conversations among patients and caregivers in the Facebook community group focused on scientific (429/511, 84%), personal (157/511, 30.7%), and practical (114/511, 22.3%) issues, many of which were related to prognostic unknowns. Both platforms suggested uncertainty management strategies that focused on information sharing and community building. Posts reflecting response-focused uncertainty management strategies (eg, emotional regulation) were more frequent on Twitter compared with the Facebook community group (χ21=3.9; P=.05), whereas posts reflecting uncertainty-focused management strategies (eg, ordering information) were more frequent in the Facebook community group compared with Twitter (χ21=55.1; P<.001). In the Facebook community group, only 36% (184/511) of members created posts during the study period, and those who created posts did so with a low frequency (median 3, IQR 1-7 posts). Analysis of post creator characteristics suggested that most users of TBD social media are White, female, and parents of patients with dyskeratosis congenita.

Conclusions: Although uncertainty is a pervasive and multifactorial issue in TBDs, our findings suggest that the discussion of medical uncertainty on TBD social media is largely limited to brief exchanges about scientific, personal, or practical issues rather than ongoing supportive conversation. The nature of uncertainty-related conversations also varied by user group: patients and caregivers used social media primarily to discuss scientific uncertainties (eg, regarding prognosis), form social connections, or exchange advice on accessing and organizing medical care, whereas Team Telomere used social media to express scientific and personal issues of uncertainty and to address the emotional impact of uncertainty. The higher involvement of female parents on TBD social media suggests a potentially greater burden of uncertainty management among mothers compared with other groups. Further research is needed to understand the dynamics of social media engagement to manage medical uncertainty in the TBD community.

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