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

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.

Self-report symptom-based endometriosis prediction using machine learning

“…The survey included 56 endometriosis symptoms that were compiled based on an extensive review of relevant literature 2,5,7,[19][20][21][22][30][31][32][33][34] . Respondents indicated (true/false) whether they experienced each symptom in the past month.…”

Defining Destigmatizing Design Guidelines for Use in Sexual Health-Related Digital Technologies: A Delphi Study

“…A Delphi study was chosen because it supports the development of items through consensus-building among a group of experts on a given topic. A panel of experts in stigma and sexual health research were consulted via an online survey and asked to appraise and critique a preliminary set of design guidelines identified from the literature and from prior studies [8][9][10][11][12][13][14][15][16]18,19]. The panel of experts were also asked to comment on each guideline as well as identify additional design guidelines that they thought could help address stigma via digital platforms.…”

Recommendations for patient education in the management of persistent pelvic pain: a systematic review of clinical practice guidelines

“…57,59 Consumers who have improved or recovered from chronic pain-including those with PPP-have also stipulated the PSE content that they value, 40,41 which should be considered in future investigations. Furthermore, pain education interventions should also be developed in light of the existing evidence; providing reassurance and reducing stigmatisation and pain-related fear have all shown to be of benefit to people with persistent pain when provided in education programs 2,20,65 and may be important to include for PPP education. It would also be of benefit to translate this work for male patients with pelvic pain to better understand if similar exist in guidelines for those conditions.…”