{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,3]],"date-time":"2026-10-03T04:53:02Z","timestamp":1791003182446,"version":"4.1.0"},"reference-count":41,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Form Res"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Instagram and other social media platforms provide a unique environment for people with chronic illnesses to share experiences, but posts with higher engagement may also shape behavior. The hashtag #ChronicIllness appears in over 5 million posts, reflecting the large digital community where users seek validation, connection, and support. Frameworks such as social cognitive theory, self-presentation theory, and illness identity theory suggest that highly engaging content can shift social norms and drive behavior change via observational learning. Despite the strong theoretical basis for this behavioral impact, little is known about what chronic illness\u2013related content is the most engaging.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n The aim of this study is to identify the content of Instagram posts related to chronic illness and determine if health care content is associated with higher engagement.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n This study is a mixed methods content analysis of 279 publicly available Instagram posts tagged with #chronicillness, #chronicallyill, or #spoonie. Posts were selected via convenience sampling and included if they featured original, nonvideo content. Photos, hashtags, and captions were coded for themes including location, medical equipment, health care experience, and illness identity. Quantitative metrics, such as likes, comments, and overperforming scores (a normalized metric of engagement), were extracted using CrowdTangle. Multivariate analyses assessed if health care content (posts featuring health care experiences or photos in a medical setting or with medical equipment) was associated with a higher odds of overperforming.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n Posts had a median of 25 (IQR 0-14,936) likes, 3 (IQR 0-525) comments, and 20 (IQR 1-31) hashtags. A total of 222 (80%) posts were created by women, and 110 (40%) were overperforming. Photo analysis (260 posts with 406 photos) showed 27 (10%) in health care settings, and 49 (19%) included medical equipment, with 10 (4%) featuring invasive devices (eg, intravenous lines and feeding tubes), which were strongly associated with higher engagement. Hashtag analysis revealed that 243 (87%) posts referenced a medical condition, most commonly chronic pain (n=101, 36%), fibromyalgia (n=56, 20%), and Ehlers-Danlos syndrome (n=38, 14%), while 57 (20%) included medical interventions. Captions reflected 4 main themes: medical experience, illness journey, connection, and nonillness experiences. In multivariate regression analysis, longer captions (odds ratio [OR] 2.44, 95% CI 1.05\u20105.67), health care content (OR 1.85, 95% CI 1.00\u20103.42), and invasive medical equipment (OR 6.19, 95% CI 1.16\u201032.99) were independently associated with overperforming.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n Posts featuring health care content and invasive medical equipment were associated with significantly more engagement, suggesting that medicalized portrayals of illness may be amplified on Instagram. This visibility may offer support but also risks reinforcing illness-centered identities and overmedicalization through the influence of observational learning and identity formation. Medical professionals must be aware of these trends and promote balanced, evidence-based content. Future research should explore how social media shapes health behaviors, identity, and utilization to mitigate potential harms while preserving support.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/57523","type":"journal-article","created":{"date-parts":[[2025,7,2]],"date-time":"2025-07-02T02:45:06Z","timestamp":1751424306000},"page":"e57523-e57523","source":"Crossref","is-referenced-by-count":4,"title":["Health Care Content and Engagement in Chronic Illness Instagram Posts: Content Analysis"],"prefix":"10.2196","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7606-5052","authenticated-orcid":false,"given":"Lindsey D","family":"Daon","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8939-9617","authenticated-orcid":false,"given":"Fu-Shiuan Whitney","family":"Lee","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5623-5218","authenticated-orcid":false,"given":"Olga","family":"Saynina","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6278-4889","authenticated-orcid":false,"given":"C Jason","family":"Wang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2025,9,26]]},"reference":[{"key":"R1","unstructured":"#chronicillness. Instagram. URL: https:\/\/www.instagram.com\/explore\/search\/keyword\/?q=%23chronicillness [Accessed 26-02-2025]"},{"issue":"9","key":"R2","doi-asserted-by":"publisher","first-page":"1175","DOI":"10.1037\/0003-066x.44.9.1175","article-title":"Human agency in social cognitive theory","volume":"44","author":"Bandura","journal-title":"Am Psychol"},{"issue":"10","key":"R3","doi-asserted-by":"publisher","first-page":"989","DOI":"10.1016\/j.biopsych.2024.12.012","article-title":"Old strategies, new environments: reinforcement learning on social media","volume":"97","author":"Turner","journal-title":"Biol Psychiatry"},{"issue":"12","key":"R4","doi-asserted-by":"publisher","first-page":"1335","DOI":"10.1016\/j.amjmed.2015.06.015","article-title":"Social media use in chronic disease: a systematic review and novel taxonomy","volume":"128","author":"Patel","journal-title":"Am J Med"},{"issue":"8","key":"R5","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.3275","article-title":"Representation of health conditions on Facebook: content analysis and evaluation of user engagement","volume":"16","author":"Hale","journal-title":"J Med Internet Res"},{"issue":"10","key":"R6","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.7656","article-title":"Consumer health-related activities on social media: exploratory study","volume":"19","author":"Benetoli","journal-title":"J Med Internet Res"},{"key":"R7","doi-asserted-by":"publisher","DOI":"10.1016\/j.techfore.2021.120574","article-title":"Social media-enabled healthcare: a conceptual model of social media affordances, online social support, and health behaviors and outcomes","volume":"166","author":"Lin","journal-title":"Technol Forecast Soc Change"},{"issue":"1","key":"R8","doi-asserted-by":"publisher","DOI":"10.2196\/30379","article-title":"Social media and health care (part II): narrative review of social media use by patients","volume":"24","author":"Farsi","journal-title":"J Med Internet Res"},{"issue":"3","key":"R9","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.5260","article-title":"Long-term condition self-management support in online communities: a meta-synthesis of qualitative papers","volume":"18","author":"Allen","journal-title":"J Med Internet Res"},{"issue":"2","key":"R10","doi-asserted-by":"publisher","first-page":"219","DOI":"10.1111\/j.1468-0009.2012.00662.x","article-title":"Health and illness in a connected world: how might sharing experiences on the internet affect people\u2019s health?","volume":"90","author":"Ziebland","journal-title":"Milbank Q"},{"issue":"1","key":"R11","doi-asserted-by":"publisher","first-page":"163","DOI":"10.1177\/1468795X12474055","article-title":"The everyday life of the self: reworking early Goffman","volume":"13","author":"Raffel","journal-title":"J Class Sociol"},{"issue":"5","key":"R12","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0286135","article-title":"Examining retweeting behavior on social networking sites from the perspective of self-presentation","volume":"18","author":"Shi","journal-title":"PLoS One"},{"issue":"7","key":"R13","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0254670","article-title":"Behavioral contagion on social media: effects of social norms, design interventions, and critical media literacy on self-disclosure","volume":"16","author":"Masur","journal-title":"PLoS One"},{"issue":"1_suppl","key":"R14","doi-asserted-by":"publisher","first-page":"31S","DOI":"10.1177\/15394492020220S105","article-title":"The self as habit: the reconstruction of self in chronic illness","volume":"22","author":"Charmaz","journal-title":"Occup Ther J Res"},{"issue":"1","key":"R15","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1007\/s12529-022-10072-y","article-title":"Illness identity in inflammatory bowel disease","volume":"30","author":"Rassart","journal-title":"Int J Behav Med"},{"issue":"5","key":"R16","doi-asserted-by":"publisher","first-page":"757","DOI":"10.2337\/dc15-2559","article-title":"Illness identity in adolescents and emerging adults with type 1 diabetes: introducing the illness identity questionnaire","volume":"39","author":"Oris","journal-title":"Diabetes Care"},{"issue":"9","key":"R17","doi-asserted-by":"publisher","DOI":"10.2196\/21204","article-title":"Factors engaging users of diabetes social media channels on Facebook, Twitter, and Instagram: observational study","volume":"22","author":"Gabarron","journal-title":"J Med Internet Res"},{"key":"R18","doi-asserted-by":"publisher","DOI":"10.1016\/j.bodyim.2022.03.007","article-title":"The dangers of the rabbit hole: reflections on social media as a portal into a distorted world of edited bodies and eating disorder risk and the role of algorithms","volume":"41","author":"Harriger","journal-title":"Body Image"},{"key":"R19","unstructured":"The Spoon Theory written by Christine Miserandino. But You Dont Look Sick? 2013. URL: https:\/\/butyoudontlooksick.com\/articles\/written-by-christine\/the-spoon-theory\/ [Accessed 27-02-2025]"},{"key":"R20","unstructured":"Sickness and lies. BBC News. URL: https:\/\/www.bbc.co.uk\/programmes\/p09r3w40 [Accessed 27-02-2025]"},{"key":"R21","unstructured":"Mulcahy L . Dying for attention: faking illness becomes an online epidemic. WebMD. URL: https:\/\/www.webmd.com\/mental-health\/features\/dying-attention-faking-illness-becomes-online-epidemic [Accessed 02-03-2025]"},{"issue":"2","key":"R22","doi-asserted-by":"publisher","first-page":"476","DOI":"10.1093\/brain\/awab316","article-title":"Stop that! It\u2019s not Tourette\u2019s but a new type of mass sociogenic illness","volume":"145","author":"M\u00fcller-Vahl","journal-title":"Brain (Bacau)"},{"issue":"8","key":"R23","doi-asserted-by":"publisher","first-page":"1200","DOI":"10.1002\/mdc3.13316","article-title":"TikTok tics: a pandemic within a pandemic","volume":"8","author":"Olvera","journal-title":"Mov Disord Clin Pract"},{"issue":"1","key":"R24","doi-asserted-by":"publisher","first-page":"41","DOI":"10.1097\/HRP.0000000000000416","article-title":"Self-diagnosed cases of dissociative identity disorder on social media: conceptualization, assessment, and treatment","volume":"33","author":"Salter","journal-title":"Harv Rev Psychiatry"},{"issue":"9","key":"R25","doi-asserted-by":"publisher","first-page":"563","DOI":"10.1080\/10810730.2023.2235563","article-title":"Normalizing anxiety on social media increases self-diagnosis of anxiety: the mediating effect of identification (but not stigma)","volume":"28","author":"Hasan","journal-title":"J Health Commun"},{"issue":"7","key":"R26","doi-asserted-by":"publisher","first-page":"551","DOI":"10.1093\/abm\/kaac081","article-title":"Peer-to-peer: the social transmission of symptoms online","volume":"57","author":"Tan","journal-title":"Ann Behav Med"},{"issue":"1","key":"R27","doi-asserted-by":"publisher","first-page":"270","DOI":"10.1177\/13591045221098522","article-title":"The tic in TikTok and (where) all systems go: mass social media induced illness and Munchausen\u2019s by internet as explanatory models for social media associated abnormal illness behavior","volume":"28","author":"Giedinghagen","journal-title":"Clin Child Psychol Psychiatry"},{"key":"R28","doi-asserted-by":"publisher","DOI":"10.1016\/j.comppsych.2022.152362","article-title":"Social media as an incubator of personality and behavioral psychopathology: symptom and disorder authenticity or psychosomatic social contagion?","volume":"121","author":"Haltigan","journal-title":"Compr Psychiatry"},{"key":"R29","unstructured":"How do you calculate overperforming scores? CrowdTangle Help Center. URL: http:\/\/help.crowdtangle.com\/en\/articles\/2013937-how-do-you-calculate-overperforming-scores [Accessed 14-06-2023]"},{"issue":"6","key":"R30","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0157235","article-title":"Three-quarters of persons in the US population reporting a clinical diagnosis of fibromyalgia do not satisfy fibromyalgia criteria: the 2012 National Health Interview Survey","volume":"11","author":"Walitt","journal-title":"PLoS One"},{"issue":"2","key":"R31","doi-asserted-by":"publisher","first-page":"45","DOI":"10.1055\/a-2268-5441","article-title":"Implications of online self-diagnosis in psychiatry","volume":"57","author":"Monteith","journal-title":"Pharmacopsychiatry"},{"issue":"4","key":"R32","doi-asserted-by":"publisher","first-page":"503","DOI":"10.1016\/j.amjmed.2021.10.040","article-title":"Mistaken identity: many diagnoses are frequently misattributed to Lyme disease","volume":"135","author":"Kobayashi","journal-title":"Am J Med"},{"issue":"9","key":"R33","doi-asserted-by":"publisher","first-page":"2794","DOI":"10.1111\/all.15304","article-title":"Idiopathic mast cell activation syndrome is more often suspected than diagnosed\u2014a prospective real-life study","volume":"77","author":"Buttgereit","journal-title":"Allergy"},{"issue":"1","key":"R34","doi-asserted-by":"publisher","DOI":"10.1186\/s12883-024-03872-0","article-title":"Chronic overlapping pain conditions in people with myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS): a sample from the multi-site clinical assessment of ME\/CFS (MCAM) study","volume":"24","author":"Fall","journal-title":"BMC Neurol"},{"issue":"6","key":"R35","doi-asserted-by":"publisher","DOI":"10.2196\/12876","article-title":"Mining of textual health information from Reddit: analysis of chronic diseases with extracted entities and their relations","volume":"21","author":"Foufi","journal-title":"J Med Internet Res"},{"issue":"7","key":"R36","doi-asserted-by":"publisher","first-page":"1300","DOI":"10.1080\/10410236.2024.2397268","article-title":"Health-related communication of social media influencers: a scoping review","volume":"40","author":"Ka\u0148kov\u00e1","journal-title":"Health Commun"},{"issue":"14","key":"R37","doi-asserted-by":"publisher","first-page":"3577","DOI":"10.1080\/10410236.2024.2326261","article-title":"The impact of celebrity and influencer illness disclosures","volume":"39","author":"Myrick","journal-title":"Health Commun"},{"issue":"7","key":"R38","doi-asserted-by":"publisher","DOI":"10.2196\/17338","article-title":"Assessment of adaptive engagement and support model for people with chronic health conditions in online health communities: combined content analysis","volume":"22","author":"Green","journal-title":"J Med Internet Res"},{"key":"R39","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyg.2021.808525","article-title":"Role of social media marketing activities in influencing customer intentions: a perspective of a new emerging era","volume":"12","author":"Jamil","journal-title":"Front Psychol"},{"key":"R40","unstructured":"Investigation: how TikTok\u2019s algorithm figures out your deepest desires. WSJ. URL: https:\/\/tinyurl.com\/muke5yme [Accessed 02-03-2025]"},{"key":"R41","doi-asserted-by":"publisher","DOI":"10.2196\/45858","article-title":"Peer support for chronic pain in online health communities: quantitative study on the dynamics of social interactions in a chronic pain forum","volume":"26","author":"Necaise","journal-title":"J Med Internet Res"}],"container-title":["JMIR Formative Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/formative.jmir.org\/2025\/1\/e57523","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T17:48:13Z","timestamp":1782841693000},"score":1,"resource":{"primary":{"URL":"https:\/\/formative.jmir.org\/2025\/1\/e57523"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,9,26]]},"references-count":41,"URL":"https:\/\/doi.org\/10.2196\/57523","relation":{},"ISSN":["2561-326X"],"issn-type":[{"value":"2561-326X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,9,26]]},"article-number":"v9i9e57523"}}