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

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.

Systematizing destigmatization in the context of media and communication: a systematic literature review

“…Second, other publications refer to combating stigma (e.g., Navon, 1996;Han et al, 2015;Settles and Furgerson, 2015;Pardo, 2018;Bartsch and Kloß, 2019;. They counter stigma (e.g., Foss, 2014a;Sisson and Kimport, 2016;Dassieu et al, 2021), address stigma (e.g., Abdulai et al, 2022), challenge stigma (e.g., Rademacher, 2018), or overcome stigma (e.g., Khazaal, 2017). Furthermore, publications mention projects against stigma (e.g., Louie et al, 2019) and anti-stigma projects (e.g., Haghighat, 2001;.…”