The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence

Renee F Modica,1 Kathleen Graham Lomax,2 Pamela Batzel,3 Leah Shapardanis,3 Kimberly Compton Katzer,3 Melissa E Elder1 1Division of Pediatric Rheumatology, Immunology and Infectious Diseases, University of Florida, Gainesville, FL, USA; 2Immunology and Dermatology Medical Affairs, Novartis Pharmaceu...

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Autores principales:	Modica RF, Lomax KG, Batzel P, Shapardanis L, Katzer KC, Elder ME
Formato:	article
Lenguaje:	EN
Publicado:	Dove Medical Press 2016
Materias:	systemic juvenile idiopathic arthritis social media linguistics language frames diagnostic process Diseases of the musculoskeletal system RC925-935
Acceso en línea:	https://doaj.org/article/c703e70c5049463980865e442ada3278
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spelling	oai:doaj.org-article:c703e70c5049463980865e442ada32782021-12-02T08:39:15ZThe family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence1179-156Xhttps://doaj.org/article/c703e70c5049463980865e442ada32782016-05-01T00:00:00Zhttps://www.dovepress.com/the-family-journey-to-diagnosis-with-systemic-juvenile-idiopathic-arth-peer-reviewed-article-OARRRhttps://doaj.org/toc/1179-156XRenee F Modica,1 Kathleen Graham Lomax,2 Pamela Batzel,3 Leah Shapardanis,3 Kimberly Compton Katzer,3 Melissa E Elder1 1Division of Pediatric Rheumatology, Immunology and Infectious Diseases, University of Florida, Gainesville, FL, USA; 2Immunology and Dermatology Medical Affairs, Novartis Pharmaceuticals Corporation, East Hanover, USA; 3Treato, Princeton, NJ, USA Background: Children with systemic juvenile idiopathic arthritis (SJIA) often encounter a delay between symptom onset and disease diagnosis, partly due to the broad differential of fever and lack of symptom recognition by providers. Families often seek multiple medical opinions and post on social media about their frustrations. This linguistic analysis observed the changing language patterns and social media posting behaviors of parents in the time leading to, during, and after SJIA diagnosis. Methods: Public social media sites were manually reviewed by a linguistic team to evaluate posts about SJIA from US-based parents. Results: A total of 3,979 posts between July 2001 and January 2015 were reviewed from 108 sites. Pre-SJIA diagnosis parents sought answers and shared status updates on social media, focusing primarily on the following three site types: alternative/natural lifestyle forums (39%), Facebook (27%), and disease-specific forums (17%). Posts during early prediagnosis phases were characterized by expressive language showing confidence in health care providers and trust in parental instincts. At later prediagnosis stages, parents continued to use social media, but the posts demonstrated increased frustration with delays in diagnosis and gaps in communication with providers. More objective symptom descriptions and a greatly reduced child-centered emotional focus were observed as parents shifted into caregiving roles. Once the diagnosis of SJIA was confirmed, parents used straightforward, less expressive language, and Facebook (47%) to make "announcement" posts and increased their use of SJIA websites (30%). With treatment initiation, the posts demonstrated a slow return of expressive language and an increased parental understanding of the "new normal". Conclusion: Parents use different language styles, frames of reference, and websites before and after SJIA diagnosis. Gaps in parent–provider communication, especially before diagnosis, and their new roles as caregivers lead to parental use of social media to express frustration with the health care process. Providers should tailor their discussions with parents to address these issues. Keywords: systemic juvenile idiopathic arthritis, social media, linguistics, language frames, diagnostic processModica RFLomax KGBatzel PShapardanis LKatzer KCElder MEDove Medical Pressarticlesystemic juvenile idiopathic arthritissocial medialinguisticslanguage framesdiagnostic processDiseases of the musculoskeletal systemRC925-935ENOpen Access Rheumatology: Research and Reviews, Vol 2016, Iss Issue 1, Pp 61-71 (2016)
institution	DOAJ
collection	DOAJ
language	EN
topic	systemic juvenile idiopathic arthritis social media linguistics language frames diagnostic process Diseases of the musculoskeletal system RC925-935
spellingShingle	systemic juvenile idiopathic arthritis social media linguistics language frames diagnostic process Diseases of the musculoskeletal system RC925-935 Modica RF Lomax KG Batzel P Shapardanis L Katzer KC Elder ME The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence
description	Renee F Modica,1 Kathleen Graham Lomax,2 Pamela Batzel,3 Leah Shapardanis,3 Kimberly Compton Katzer,3 Melissa E Elder1 1Division of Pediatric Rheumatology, Immunology and Infectious Diseases, University of Florida, Gainesville, FL, USA; 2Immunology and Dermatology Medical Affairs, Novartis Pharmaceuticals Corporation, East Hanover, USA; 3Treato, Princeton, NJ, USA Background: Children with systemic juvenile idiopathic arthritis (SJIA) often encounter a delay between symptom onset and disease diagnosis, partly due to the broad differential of fever and lack of symptom recognition by providers. Families often seek multiple medical opinions and post on social media about their frustrations. This linguistic analysis observed the changing language patterns and social media posting behaviors of parents in the time leading to, during, and after SJIA diagnosis. Methods: Public social media sites were manually reviewed by a linguistic team to evaluate posts about SJIA from US-based parents. Results: A total of 3,979 posts between July 2001 and January 2015 were reviewed from 108 sites. Pre-SJIA diagnosis parents sought answers and shared status updates on social media, focusing primarily on the following three site types: alternative/natural lifestyle forums (39%), Facebook (27%), and disease-specific forums (17%). Posts during early prediagnosis phases were characterized by expressive language showing confidence in health care providers and trust in parental instincts. At later prediagnosis stages, parents continued to use social media, but the posts demonstrated increased frustration with delays in diagnosis and gaps in communication with providers. More objective symptom descriptions and a greatly reduced child-centered emotional focus were observed as parents shifted into caregiving roles. Once the diagnosis of SJIA was confirmed, parents used straightforward, less expressive language, and Facebook (47%) to make "announcement" posts and increased their use of SJIA websites (30%). With treatment initiation, the posts demonstrated a slow return of expressive language and an increased parental understanding of the "new normal". Conclusion: Parents use different language styles, frames of reference, and websites before and after SJIA diagnosis. Gaps in parent–provider communication, especially before diagnosis, and their new roles as caregivers lead to parental use of social media to express frustration with the health care process. Providers should tailor their discussions with parents to address these issues. Keywords: systemic juvenile idiopathic arthritis, social media, linguistics, language frames, diagnostic process
format	article
author	Modica RF Lomax KG Batzel P Shapardanis L Katzer KC Elder ME
author_facet	Modica RF Lomax KG Batzel P Shapardanis L Katzer KC Elder ME
author_sort	Modica RF
title	The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence
title_short	The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence
title_full	The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence
title_fullStr	The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence
title_full_unstemmed	The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence
title_sort	family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence
publisher	Dove Medical Press
publishDate	2016
url	https://doaj.org/article/c703e70c5049463980865e442ada3278
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The family journey-to-diagnosis with systemic juvenile idiopathic arthritis: a cross-sectional study of the changing social media presence

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