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.
Background Endometriosis-associated deep dyspareunia is associated with reduced sexual quality of life, lower self-esteem, and impaired sexual function. Objective The primary objective is to assess the acceptability of a phallus length reducer (brand name: Ohnut [OhnutCo]), which is a buffer worn over the penis or a penetrating object to reduce endometriosis-associated deep dyspareunia, and the feasibility of a definitive randomized controlled trial (RCT). The secondary objective is to obtain estimates of the effectiveness of the buffer. An embedded substudy will explore the acceptability and the preliminary validity and reliability of a vaginal insert for the self-assessment of deep dyspareunia. Methods Ours is an investigator-initiated, 2-arm RCT. We will recruit 40 patient participants with diagnosed endometriosis between the ages of 19 and 49 years, as well as their sexual partners. The participating couples will be randomized in a 1:1 ratio into the experimental arm or the waitlist control arm. The length of the study period will be 10 weeks, during which time all participants will record deep dyspareunia severity following each episode of sexual intercourse. In weeks 1 to 4, all patient participants will record deep dyspareunia severity at each sexual encounter. In weeks 5 to 10, participants in the experimental arm will use the buffer during vaginal penetration; participants in the waitlist control arm will continue engaging in vaginal penetration as usual. Participants will complete questionnaires for assessing measures of anxiety, depression, and sexual function at baseline, at 4 weeks, and at 10 weeks. In the substudy, patient participants will self-assess dyspareunia by using a vaginal insert on 2 occasions, at least 1 week apart. The primary outcomes—the acceptability and feasibility of the buffer—will be assessed with descriptive statistics, and the secondary outcome—phallus length reducer effectiveness—will be assessed by using an analysis of covariance–based approach. For the vaginal insert, we will assess acceptability, test-retest reliability, and convergent validity via correlation analyses comparing the use of the insert to clinical examination in terms of dyspareunia assessment outcomes. Results Our pilot will provide initial data on the acceptability and effectiveness of the buffer and the feasibility of the study methodology. The results from our study are expected to be submitted for publication by the spring of 2023. As of September 2021, we have consented 31 couples into the study. Conclusions Our study will provide preliminary evidence for the self-assessment and management of endometriosis-associated deep dyspareunia. The findings will inform the decision to proceed to a definitive RCT. Trial Registration ClinicalTrials.gov NCT04370444; https://clinicaltrials.gov/ct2/show/NCT04370444 International Registered Report Identifier (IRRID) DERR1-10.2196/39834
Background Endometriosis is a complex chronic disease characterized by pain, including painful sex, that can contribute to considerable sexual function, self-esteem, and relationship challenges. Digital storytelling is an arts-based, participatory methodology wherein individuals create and share their illness experiences in detailing their lived experiences. Objective The study objective was to pilot-test a web-based digital storytelling workshop focused on endometriosis to understand storytellers’ experiences of workshop participation. We assessed the feasibility of story cocreation and sharing, including the emotional impact of workshop participation, the acceptability of the workshop for the subject matter, and the storytellers’ willingness to share their stories with broader audiences as a method for knowledge translation. Methods This study used a community-based participatory methodology supplemented with patient-oriented research and integrated knowledge translation. Study participants, referred to as storytellers, cocreated 3- to 5-minute individual digital stories about their lived experiences of endometriosis during a web-based workshop (comprising five 2-hour sessions over 6 weeks) facilitated by The Center for Digital Storytelling. Data were collected through participant observations at the workshop, storyteller weekly reflective journals, and an end-of-workshop focus group interview with storytellers. These data were analyzed using a qualitative interpretive description approach. Results A total of 5 women and 1 nonbinary storyteller aged 19 to 39 years who had experienced endometriosis for 4 to 22 years participated in the study. We characterized storytelling workshop participation and the acceptability of story cocreation by describing participants’ experiences of opportunity, commitment, and connection; complex emotions that were healing; and a desire to share. Feasibility was demonstrated through 100% engagement in the workshops. All 6 storytellers reported feeling empowered by publicly sharing their cocreated digital stories through social media and the Sex, Pain & Endometriosis website. Conclusions Despite the complexities of the story-building process, the workshop and the cocreation and sharing of digital stories were feasible. The storytellers found that this process allowed for emotional healing and personal empowerment by offering a unique way to talk about painful sex, which also facilitated a connection among those in the workshop. The use of digital storytelling as a knowledge translation tool shows promise, and this approach also has potential as a therapeutic intervention.
BACKGROUND Endometriosis-associated deep dyspareunia is associated with reduced sexual quality of life, lower self-esteem, and impaired sexual function. OBJECTIVE The primary objective is to assess the acceptability of a buffer worn over the penis or penetrating object to reduce endometriosis-associated deep dyspareunia and the feasibility of a definitive randomized controlled trial (RCT). The secondary objective is to obtain effectiveness estimates of the buffer. An embedded sub-study seeks to explore the acceptability and preliminary validity and reliability of a vaginal insert for self-assessment of deep dyspareunia. METHODS This is an investigator-initiated, 2-arm RCT. We will recruit 40 patient participants with diagnosed endometriosis between the ages of 19-49 and their sexual partners. The participating couples will be randomized in a 1:1 ratio into the experimental arm or the waitlist control arm. The study period is 10 weeks, during which time all participants will record deep dyspareunia severity following each episode of sexual intercourse. In weeks 1-4, all patient participants will record deep dyspareunia. In weeks 5-10, participants in the experimental arm will use the buffer during vaginal penetration; participants in the waitlist control arm will continue having vaginal penetration as usual. Participants will complete questionnaires assessing measures of anxiety, depression and sexual function at baseline, at 4 weeks, and at 10 weeks. In the sub-study, patient participants will self-assess dyspareunia using a vaginal insert on two occasions, at least 1 week apart. The primary outcomes of acceptability and feasibility of the buffer will be assessed with descriptive statistics, and the secondary outcome of PLR effectiveness will be assessed using an ANCOVA-based approach. Acceptability of the vaginal insert will be assessed, as well as convergent validity and test-retest reliability through correlation to dyspareunia assessed by clinical exam. RESULTS This pilot will provide initial data on the acceptability and effectiveness of the buffer and feasibility of the study methodology. CONCLUSIONS This study will provide preliminary evidence for the self-assessment and management of endometriosis-associated deep dyspareunia. The randomized design is a strength of this study. One limitation is that definitive estimates of effectiveness of the buffer and validity for the vaginal insert will not be possible because this is a pilot trial. The findings will inform the decision to proceed to a definitive randomized controlled trial. CLINICALTRIAL ClinicalTrials.gov: NCT04370444; https://clinicaltrials.gov/ct2/show/NCT04370444
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.
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