Living with Endometriosis: The Role of the Internet in Supporting the Diagnosis and Treatment Process
Abstract
Those living with endometriosis turn to online resources for information and support. Despite an abundance of information, delays in diagnosis and perpetuation of untruths remain. This study aims to assess and evaluate the role of the Internet in the diagnosis, treatment options and support of people living with endometriosis. The results of this mixed-methods study show that people are very active information seekers with the majority favoring national endometriosis websites and their associated Facebook accounts. There is a positive attitude toward information and sharing experiences online, but women trust official endometriosis organizations more than other resources on the Internet.
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Turning to internet-based resources and/or mobile apps for information and support has been previously identified in other aspects of women's health, such as endometriosis and pregnancy.
“Turning to internet-based resources and/or mobile apps for information and support has been previously identified in other aspects of women’s health, such as endometriosis [112] and pregnancy [113].”
From Polycystic Ovary Syndrome and the Internet of Things: A Scoping Review (2024) · cites this paper as [112]
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- Authors
- Sbaffi, L., & King, K.
- Affiliations
- University of Sheffield (GB)
- Letterkenny University Hospital (IE)
- Corresponding author
- Sbaffi, Laura
- Venue
- Journal of Consumer Health on the Internet
- Publisher
- Informa UK Limited
- Published
- 2020-10-01
- Volume
- 24
- Issue
- 4
- Pages
- 370-390
- ISSN
- 1539-8285 (ISSN-L)
- 1539-8293
- OpenAlex
- W3112210629
- Cited by
- 24
- References
- 42
- Citations by year
- 2026: 5 · 2025: 4 · 2024: 3 · 2023: 8 · 2022: 3 · 2021: 1
- FWCI
- 3.13
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Consumer Health on the Internet (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Health › Social Media in Health Education
- Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
- Keywords
- endometriosis, online health information seeking, internet health resources, endometriosis diagnosis, endometriosis treatment, patient support, Facebook, online communities, misinformation, delayed diagnosis
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