How Women with Endometriosis Use Social Media for Support and Self-Management: An Analysis of Reddit Content

Alaina Loughran; Kirstie Daken; Carol du Plessis; Amy B Mullens

doi:10.3390/ijerph22111706

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How Women with Endometriosis Use Social Media for Support and Self-Management: An Analysis of Reddit Content

Journal article

Open access

Peer reviewed

How Women with Endometriosis Use Social Media for Support and Self-Management: An Analysis of Reddit Content

Alaina Loughran, Kirstie Daken, Carol du Plessis and Amy B Mullens

International Journal of Environmental Research and Public Health, Vol.22(11), pp.1-21

2025

DOI: https://doi.org/10.3390/ijerph22111706

PMID: 41302652

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Abstract

endometriosis

Information-Motivation-Behavioural (IMB) skills model

self-management

women

Women with endometriosis often experience insufficient knowledge and support regarding their condition within the healthcare system. Women use social media to obtain information, share personal experiences, and establish connections with others. This study examined how women with endometriosis-like symptoms use Reddit to seek support and acquire knowledge for self-management, with three research questions guided by the Information-Motivation-Behavioural skills model. A total of 194 threads were analysed from the r/endo subreddit, and a reflexive thematic analysis was conducted. Three overarching themes were identified (information, motivation, and behavioural skills) and six subthemes emerged from the data (endometriosis experience, endometriosis medical care, personal life impacts, social existence impacts, management strategies negative, and management strategies positive). Findings highlight that Reddit functions as a source of shared knowledge, symptom validation, emotional support, supplementing gaps in traditional healthcare services. This study provides insights into how healthcare systems and professionals can support women with endometriosis, including timely diagnosis and management strategies, in addition to a framework for an endometriosis Information-Motivation-Behavioural skills model. Future research could expand on study findings by implementing this conceptualised model in a mixed-methods context to gain insight into women's endometriosis experiences within healthcare systems to understand how they can be empowered and supported.

Details

Title: How Women with Endometriosis Use Social Media for Support and Self-Management: An Analysis of Reddit Content
Authors: Alaina Loughran - University of Southern Queensland
Kirstie Daken (Corresponding Author) - University of Southern Queensland
Carol du Plessis - University of Southern Queensland
Amy B Mullens - University of Southern Queensland
Publication details: International Journal of Environmental Research and Public Health, Vol.22(11), pp.1-21
Publisher: MDPI AG
Date published: 2025
DOI: 10.3390/ijerph22111706
ISSN: 1660-4601; 1661-7827
PMID: 41302652
Copyright note: © 2025 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Data Availability: The data that support the findings of this study are available from the corresponding author upon reasonable request. Due to ethical restrictions, some data may not be publicly shared.
Organisation Unit: School of Health - Psychology
Language: English
Record Identifier: 991201542702621
Output Type: Journal article

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