Content analysis of patient support groups related to myositis on Facebook

Aiman Perween Afsar; Shounak Ghosh; Renil Sinu Titus; Karen Cheng; Arundati A. Kanawala; Peter Kerkhof; Jessica Day; Latika Gupta

doi:10.1007/s10067-023-06854-8

Content analysis of patient support groups related to myositis on Facebook

Aiman Perween Afsar, Shounak Ghosh, Renil Sinu Titus, Karen Cheng, Arundati A. Kanawala, Peter Kerkhof, Jessica Day, Latika Gupta^*

^*Corresponding author for this work

Research output: Contribution to Journal › Article › Academic › peer-review

Abstract

Idiopathic inflammatory myopathies (IIM) are heterogeneous and complex, and routine consultation can be overwhelming for patients, or sometimes so rushed that patients feel unable to discuss their needs and wishes adequately. As a result, online patient support groups (PSGs) on social media platforms like Facebook may help provide them with information they are seeking, and the support of the patient community who are living with this condition. Our goal is to explore the current landscape of PSGs in IIM to discuss the future of such groups and their role in supporting patient-driven self-management of complex connective tissue diseases.

Original language	English
Pages (from-to)	725–732
Number of pages	8
Journal	Clinical Rheumatology
Volume	43
Issue number	2
DOIs	https://doi.org/10.1007/s10067-023-06854-8
Publication status	Published - 2024

Funding

JD is the recipient of the Sylvia and Charles Viertel Charitable Foundation Clinical Investigator Award, the John T Reid Charitable Trust Centenary Fellowship and the RACP Australian Rheumatology Association & D.E.V Starr Research Establishment Fellowship.

Funders	Funder number
Sylvia and Charles Viertel Charitable Foundation
John T. Reid Charitable Trusts

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1007/s10067-023-06854-8

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title = "Content analysis of patient support groups related to myositis on Facebook",

abstract = "Idiopathic inflammatory myopathies (IIM) are heterogeneous and complex, and routine consultation can be overwhelming for patients, or sometimes so rushed that patients feel unable to discuss their needs and wishes adequately. As a result, online patient support groups (PSGs) on social media platforms like Facebook may help provide them with information they are seeking, and the support of the patient community who are living with this condition. Our goal is to explore the current landscape of PSGs in IIM to discuss the future of such groups and their role in supporting patient-driven self-management of complex connective tissue diseases.",

author = "Afsar, {Aiman Perween} and Shounak Ghosh and Titus, {Renil Sinu} and Karen Cheng and Kanawala, {Arundati A.} and Peter Kerkhof and Jessica Day and Latika Gupta",

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doi = "10.1007/s10067-023-06854-8",

language = "English",

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AU - Afsar, Aiman Perween

AU - Ghosh, Shounak

AU - Titus, Renil Sinu

AU - Cheng, Karen

AU - Kanawala, Arundati A.

AU - Kerkhof, Peter

AU - Day, Jessica

AU - Gupta, Latika

PY - 2024

Y1 - 2024

N2 - Idiopathic inflammatory myopathies (IIM) are heterogeneous and complex, and routine consultation can be overwhelming for patients, or sometimes so rushed that patients feel unable to discuss their needs and wishes adequately. As a result, online patient support groups (PSGs) on social media platforms like Facebook may help provide them with information they are seeking, and the support of the patient community who are living with this condition. Our goal is to explore the current landscape of PSGs in IIM to discuss the future of such groups and their role in supporting patient-driven self-management of complex connective tissue diseases.

AB - Idiopathic inflammatory myopathies (IIM) are heterogeneous and complex, and routine consultation can be overwhelming for patients, or sometimes so rushed that patients feel unable to discuss their needs and wishes adequately. As a result, online patient support groups (PSGs) on social media platforms like Facebook may help provide them with information they are seeking, and the support of the patient community who are living with this condition. Our goal is to explore the current landscape of PSGs in IIM to discuss the future of such groups and their role in supporting patient-driven self-management of complex connective tissue diseases.

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DO - 10.1007/s10067-023-06854-8

M3 - Article

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JO - Clinical Rheumatology

JF - Clinical Rheumatology

IS - 2

ER -

Content analysis of patient support groups related to myositis on Facebook

Abstract

Funding

UN SDGs

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