Digital Long Covid Communities—Shaping Diagnoses, Treatment Strategies and Modes of Expertise.
Introduction: Despite having been created on social media, research into the effects of online engagement on long Covid (LC) as a diagnosis is scarce. Studies on other health‐related communities and patient participation argue that social media and other digital technologies have been instrumental i...
| Publicado en: | Health Expectations Vol. 28; no. 3; pp. 1 - 8 |
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| Formato: | research tables/charts Journal Article |
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Wiley-Blackwell
Jun2025
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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=186251872&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 186251872 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13696513 EVY jtl: Health Expectations issn: 13696513 maglogo: Y pubinfo: dt: Jun2025 vid: 28 iid: 3 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 186251872 186251872 186251872 10.1111/hex.70279 186251872 ppf: 1 ppct: 7 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Digital Long Covid Communities—Shaping Diagnoses, Treatment Strategies and Modes of Expertise. aug: au: Almqvist‐Ingersoll, Petter affil: Department of Thematic Studies, Linköping University, Linköping, Sweden sug: subj: Post-Acute COVID-19 Syndrome Psychosocial Factors Narratives Evaluation Post-Acute COVID-19 Syndrome Diagnosis Post-Acute COVID-19 Syndrome Therapy Social Media Communication Human Funding Source Sweden Thematic Analysis Digital Health Sociology Epistemology ab: Introduction: Despite having been created on social media, research into the effects of online engagement on long Covid (LC) as a diagnosis is scarce. Studies on other health‐related communities and patient participation argue that social media and other digital technologies have been instrumental in creating new ways for activism, advocacy and sharing of experiences. With its status as patient‐made, LC constitutes an example of how diagnoses are (re)constructed through social interactions in addition to Western biomedical science and clinical practice. The aim of the study is to investigate the ways in which lived experiences and larger narratives of LC are communicated and form understandings of the condition as a heterogeneous diagnosis/phenomenon. Methods: This study uses netnography, mainly focused on hidden observations of patient support and advocacy forums in which users' posts are individually sourced and thematically analysed. These themes are further discussed to illustrate overarching discourse that contributes to the sense‐making and creation of knowledge surrounding LC. Results: The study highlights three major themes, namely: users seeking commonalities in experienced symptoms, interpatient tinkering as a form of biohacking conceptualised as an epistemological process, and negotiating expertise. Discussion: The study finds that narratives shared in online spaces regarding LC act as critical factors that serve not just the affected individuals' sense‐making and understanding of their lived experience, but also in the construction of the diagnosis itself. Through sharing experiences, symptoms, scientific information and treatment options, forum users contribute to knowledge production processes that change the definition of LC as a diagnosis. Building on the sociology of diagnosis, I argue that LC serves as a significant example of how diagnoses are products of the entanglement between biomedicine, clinical practice, the social and the digital. Patient or Public Contribution: The project operates under the premise that patients from different social, cultural and professional backgrounds participate in online discussions about long Covid and that these individuals work towards individual as well as collective well‐being. As such, highlighting their engagement has the potential to inform and strengthen research and clinical practice in various ways. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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