Developing an Educational Website for Women With Endometriosis-Associated Dyspareunia: Usability and Stigma Analysis (Preprint)

Abdul‐Fatawu Abdulai, A. Fuchsia Howard, Paul J. Yong, Heather Noga, Gurkiran Parmar, Leanne M. Currie
2021 · doi:10.2196/preprints.31317 · W4231519958
preprint OA: gold CC0
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This study evaluated the usability and stigma of an endometriosis educational website, finding it easy to use and nonstigmatizing, with minor issues informing redesign.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 · read from full text ⓘ

This preprint evaluated an educational website (the Sex, Pain, and Endometriosis Website) for usability and potential destigmatizing effects among 12 women with endometriosis-associated dyspareunia, using think-aloud observations, a post-systems usability questionnaire, follow-up interviews, and a trauma-informed framework to analyze stigma-related content. Participants rated the website as simple, uncluttered, satisfying, and easy to use, but the study also identified 30 minor usability problems related to navigation, response time, comprehension of graphics/icons and tabs, content understanding, and mismatches with user expectations. The stigma assessment found the web content to be non-stigmatizing, and participants suggested design elements such as privacy/anonymity, inclusiveness, factual non-judgemental messaging, and interactive engagement. This paper is centrally about endometriosis — it focuses on usability and stigma properties of an educational website for endometriosis-associated dyspareunia.

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Abstract

BACKGROUND Endometriosis is a chronic condition that affects approximately 10% of women worldwide. Despite its wide prevalence, knowledge of endometriosis symptoms, such as pelvic pain, and treatments remains relatively low. This not only leads to a trivialization of symptoms and delayed diagnosis but also fuels myths and misconceptions about pain symptoms. At the same time, the use of web-based platforms for information seeking is particularly common among people with conditions that are perceived as stigmatizing and difficult to discuss. The Sex, Pain, and Endometriosis website is an educational resource designed to provide evidence-based information on endometriosis and sexual pain to help people understand the condition, feel empowered, dispel myths, and destigmatize endometriosis-associated sexual pain. OBJECTIVE The study objective is to evaluate the usability of the website and assess for destigmatizing properties of sexual health–related web-based resources. METHODS We conducted a usability analysis by using a think-aloud observation, a postsystem usability questionnaire, and follow-up interviews with 12 women with endometriosis. The think-aloud data were analyzed using the framework by Kushniruk and Patel for analyzing usability video data, the questionnaire data were analyzed using descriptive statistics, and the follow-up interviews were analyzed using simple content analysis. We conducted a usability assessment by deductively analyzing the interview data via a trauma-informed care framework and a content analysis approach. RESULTS Through usability analysis, we found the website to be simple, uncluttered, satisfying, and easy to use. However, 30 minor usability problems related to navigation; website response; the comprehension of graphics, icons, and tabs; the understanding of content; and mismatch between the website and users’ expectations were reported. In our stigma analysis, we found the web content to be nonstigmatizing. The participants suggested ways in which websites could be designed to address stigma, including ensuring privacy, anonymity, inclusiveness, and factual and nonjudgmental content, as well as providing opportunities for web-based engagement. CONCLUSIONS Overall, the participants found the website to be useful, easy to use, and satisfying. The usability problems identified were largely minor and informed the website redesign process. In the context of the limited literature on stigma and website design, this paper offers useful strategies on how sexual health–related websites can be designed to be acceptable and less stigmatizing to individuals with sensitive health issues. CLINICALTRIAL
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Abstract

Background: Endometriosis is a chronic condition that affects approximately 10% of women across the globe. Despite its wide prevalence, knowledge of endometriosis symptoms, such as pelvic pain, and treatments remains relatively low. This not only leads to a trivialization of symptoms and delayed diagnosis but fuels myths and misconceptions about pain symptoms. At the same time, the use of online platforms for information seeking is particularly common among people with conditions that are perceived as stigmatizing and difficult to discuss. The Sex, Pain, and Endometriosis Website is an educational resource designed to provide evidence-based information on endometriosis and sexual pain to help people understand the condition, feel empowered, dispel myths, and destigmatize endometriosis-associated sexual pain.

Objective

The study objective was to evaluate the usability of the website and assess for destigmatizing properties of sexual health-related online resources.

Methods

We conducted a usability analysis by employing a think-aloud observation, a post-systems usability questionnaire, and follow-up interviews with 12 women with endometriosis. The think-aloud data were analyzed using Kushniruk and Patel’s framework for analyzing usability video data, the questionnaire data were analyzed with descriptive statistics, and the follow-up interview was analyzed using simple content analysis. We also conducted a stigma assessment by analyzing the interview data deductively using a trauma-informed care framework and a content analysis approach.

Results

Through usability analysis, we found the website to be simple, uncluttered, satisfying, and easy to use. However, 30 minor usability problems related to navigation, website response, comprehension of graphics icons and tabs, understanding content, and mismatch between the website and users' expectations were reported. In our stigma assessment, we found the web content to be non-stigmatizing. Participants suggested ways in which websites could be designed to address stigma including ensuring privacy, anonymity, inclusiveness, and factual and non-judgemental content, as well as providing opportunities for interactive engagement.

Conclusions

Overall, participants found the website to be useful, easy to use, and satisfying. The usability problems identified were largely minor and informed the website redesign process. In the context of the limited literature on stigma and website design, this paper offers useful strategies on how sexual health-related websites can be designed to be less stigmatizing and acceptable to individuals with sensitive health issues. Citation Request queued. Please wait while the file is being generated. It may take some time. Copyright © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.

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Condition tags

endometriosisdyspareunia

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (34)

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