"我们都不愿意来到这个社区"。通过 TikTok 了解肾病综合征:患者和护理人员的观点。

IF 2.6 3区 医学 Q1 PEDIATRICS Pediatric Nephrology Pub Date : 2024-11-11 DOI:10.1007/s00467-024-06589-x
Veronica M Grad, Ahmad Khan, Keegan D'Mello, Amrit Kirpalani
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引用次数: 0

摘要

背景:TikTok是一个流行的社交媒体平台,越来越多地被用于传播健康信息;然而,医疗内容的准确性和质量仍不确定,包括肾病综合征(NS)方面的内容。本研究旨在确定患者和护理人员在 TikTok 上与肾病综合征有关的突出经历,并展示这些经历可能存在的差异:对 2020 年 7 月 1 日至 2024 年 2 月 29 日期间发布的包含 "肾病综合征 "标签的 TikTok 视频进行了方便抽样分析。对视频进行循环和归纳编码,然后进行内容和话语分析,以确定共同的主题和叙事:共有 123 个视频被纳入分析。62.6%的视频(N = 77)由护理人员分享其子女患病的经历组成。三个突出的主题包括(1) 医疗保健和疾病管理,用户分享了他们的疾病历程;(2) 情感和身体健康,照顾者关注身体疾病的征兆,而患者则强调疾病对心理健康造成的伤害;(3) 教育、意识和支持系统,用户分享了诊断后的社会隔离感。话语分析揭示了将患者描绘成 "勇士 "的语言,反映了 TikTok 支持系统所倡导的复原力:我们发现了与影响日常生活的 NS 相关的隐性疾病负担,从而强调了患者和护理人员在临床医生办公室之外所经历的旅程和压力的重要性。我们的研究结果还强调,患者的优先考虑事项可能与护理人员报告的不同,尤其是在儿科。TikTok 也可能是缓解孤独感和建立 NS 社区的一个途径。
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"None of us asked to be in this community." Understanding nephrotic syndrome through TikTok: patient and caregiver perspectives.

Background: TikTok, a popular social media platform, is increasingly used for health information dissemination; however, the accuracy and quality of medical content remain uncertain, including in the context of nephrotic syndrome (NS). This study aims to identify prominent patient and caregiver experiences with NS on TikTok and demonstrate how they may vary.

Methods: A convenience sample of TikTok videos containing the hashtag "nephrotic syndrome" posted between July 1, 2020, and February 29, 2024, was analyzed. Videos underwent cyclical and inductive coding, followed by content and discourse analysis to identify common themes and narratives.

Results: One hundred twenty-three videos were included in the analysis. 62.6% of videos (N = 77) consisted of caregivers sharing their experiences of their child's disease. Three prominent topics included: (1) navigating healthcare and managing illness, where users shared their disease journeys; (2) emotional and physical wellbeing, where caregivers focused on physical disease signs while patients highlighted the mental health toll of the illness; and (3) education, awareness, and support systems, where users shared feelings of social isolation post-diagnosis. The discourse analysis revealed language portraying patients as "warriors," reflecting the resiliency promoted by TikTok support systems.

Conclusions: We uncovered a hidden disease burden associated with NS that affects everyday life, reinforcing the importance of the journey and stress patients and caregivers experience outside of the clinician's office. Our findings also highlight that patient priorities may differ from those reported by caregivers, particularly in pediatrics. TikTok may also be an outlet for feelings of isolation and community-building within NS.

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来源期刊
Pediatric Nephrology
Pediatric Nephrology 医学-泌尿学与肾脏学
CiteScore
4.70
自引率
20.00%
发文量
465
审稿时长
1 months
期刊介绍: International Pediatric Nephrology Association Pediatric Nephrology publishes original clinical research related to acute and chronic diseases that affect renal function, blood pressure, and fluid and electrolyte disorders in children. Studies may involve medical, surgical, nutritional, physiologic, biochemical, genetic, pathologic or immunologic aspects of disease, imaging techniques or consequences of acute or chronic kidney disease. There are 12 issues per year that contain Editorial Commentaries, Reviews, Educational Reviews, Original Articles, Brief Reports, Rapid Communications, Clinical Quizzes, and Letters to the Editors.
期刊最新文献
Concurrent use of continuous kidney replacement therapy during extracorporeal membrane oxygenation: what pediatric nephrologists need to know-PCRRT-ICONIC practice points. Furosemide stress test to predict acute kidney injury progression in critically ill children. A better future for children with STEC-hemolytic uremic syndrome: news from Argentina. Acetaminophen induced high anion gap metabolic acidosis: a potentially under-recognized consequence from a common medication. Malnutrition management in children with chronic kidney disease.
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