"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 expe...
| Publicado en: | Pediatric Nephrology Vol. 40; no. 4; pp. 971 - 978 |
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| Autores principales: | , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Springer Nature
Apr2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=183485123&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 183485123 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 0931041X EF1 jtl: Pediatric Nephrology issn: 0931041X maglogo: N pubinfo: dt: Apr2025 vid: 40 iid: 4 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 183485123 180793923 183485123 183485123 10.1007/s00467-024-06589-x 183485123 ppf: 971 ppct: 7 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: "None of us asked to be in this community." Understanding nephrotic syndrome through TikTok: patient and caregiver perspectives. aug: au: Grad, Veronica M. Khan, Ahmad D'Mello, Keegan Kirpalani, Amrit affil: https://ror.org/02grkyz14 Department of Paediatrics, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada sug: subj: Nephrotic Syndrome Social Media Patient Attitudes Caregiver Attitudes Human Convenience Sample Videorecording Discourse Analysis Content Analysis Social Isolation Mental Health ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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