Stigmatizing and de-Stigmatizing Properties of Web Apps for Sexual Health-Related Conditions: A Scoping Review

Abdulai, Abdul-Fatawu; Howard, A. Fuchsia; Currie, Leanne M.

doi:10.1080/19317611.2021.1949655

Cited by 10 publications

(13 citation statements)

References 51 publications

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“…Moreover, participants described feeling that their experiences were validated after reading the website and they re ected that if viewed earlier in their illness trajectory, it could have helped them feel less alone. In the context of the stigma around sexual health-related conditions, and the mental health challenges among people with endometriosis [30], the de-stigmatizing and therapeutic potential of a website such as ours deserves subsequent investigation [31]. Furthermore, the link between the provision of health information and self-management has been previously described [32].…”

Section: Discussionmentioning

confidence: 95%

Sex, Pain & Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

Parmar

Howard

Noga

et al. 2022

Preprint

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Background We recognized a paucity of accessible, evidence-based, empowering patient-centred resources for those with endometriosis-associated dyspareunia. We aimed to develop a patient-centred educational website for those affected by endometriosis-associated dyspareunia. Methods To develop a functional and meaningful website for endometriosis-associated dyspareunia, we utilized a Knowledge to Action framework, supplemented with a patient-centred research design and technology-enabled knowledge translation. Our patient partners influenced the direction and scope of the project, provided critical feedback throughout the development process, and approved website revisions prior to launch. The website was developed in five phases; 1) needs assessment interviews and focus groups with key stakeholders, 2) landscape analysis of pre-existing websites, 3) development, 4) usability testing, and qualitative interviews, and 5) revisions and launch. Results Phase 1 and 2 emphasized a need for comprehensive yet plain language explanations of pain mechanisms and strategies for pain management. Rigorous consultation with key stakeholders informed the creation of the preliminary website, which was tested in phase 4. User testing identified five main categories of usability problems, of which the majority were considered minor. Qualitative interviews identified users’ overall impressions of the preliminary website, including that the website could help people understand their pain and describe their pain to partners and healthcare providers, as well as feel empowered to seek healthcare and validated in their experiences. User suggestions, combined with usability testing informed revisions. Conclusion We developed an educational website for endometriosis-associated painful sex where people can find evidence-based etiologies for pain, pain management options, and actionable resources. Based on the data collected through qualitative interviews with patients, this website has the potential to empower people to seek health care. The strength of the website development approach used was the inclusion of qualitative user insights in addition to the commonly completed user tests. The patient interviews provided insights into the potential impact of the website and thus, ensured that we not only created a functional website that meets end users’ needs, but a website that is also meaningful to those affected by this condition.

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Section: Discussionmentioning

confidence: 95%

Sex, Pain & Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

Parmar

Howard

Noga

et al. 2022

Preprint

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“…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.…”

Section: Methodsmentioning

confidence: 99%

“…Previous studies have revealed how some digital health technologies not only fail to address the stigma of sexual health issues but may also contain interface components that could inadvertently aggravate stigma among end-users [12,15]. For instance, people living with sexual health-related conditions can link the appearance of sexual health-related content to an existing public stigma, thereby resulting in a digital health technology that elicits stigma.…”

Section: Introductionmentioning

confidence: 99%

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

Abdulai¹,

Howard²,

Yong

et al. 2023

Preprint

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ObjectiveStigma has been recognized as a significant issue in sexual health, yet no specific guidelines exist to support digital health development teams in creating stigma-alleviating sexual health digital platforms. The purpose of this study was to develop a set of design guidelines that would serve as a reference point for addressing stigma during the design of sexual health-related digital platforms.Materials and MethodsWe conducted a 3-round Delphi study among 14 researchers in stigma and sexual health. A preliminary list of 28 design guidelines was generated from a literature review. Participants appraised and critiqued the clarity and usefulness of the preliminary list and provided comments for each item and for the overall group of items at each round. At each round, a content validity index and an interquartile range were calculated to determine the level of consensus regarding the clarity and usefulness of each guideline. Items were retained if there was high consensus and discarded if there was no consensus after the three rounds.ResultsNineteen design guidelines achieved consensus. Most of them were content-related guidelines and sought to address the emotional concerns of patients that could potentially aggravate stigma. The findings also reflected modern stigma management strategies of making stigma a societal attribute by challenging, exposing, and normalizing stigma attributes via web platforms.ConclusionTo address stigma via digital platforms, developers should not just concentrate on technical solutions but seriously consider content-related and emotional design components that are likely to result in stigma

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“…We assessed for destigmatizing properties as websites on sensitive health topics are not typically assessed for their ability to address or exacerbate stigma despite stigma being an outcome of interest for content developers [16][17][18]. That is, it is unclear how the design of digital platforms for general sensitive health problems could help address stigma or inadvertently reproduce and perpetuate stigma among users [19,20].…”

Section: Sex Pain and Endometriosis Website Developmentmentioning

confidence: 99%

“…Given that some sexual health-related technologies may inadvertently exacerbate stigma [19,20], the follow-up interviews also included questions to understand the ways in which such websites can be designed to address stigma. In other words, the focus of the interviews was to use our website as a reference point to identify generalities about how destigmatizing sexual health-related websites could be designed.…”

Section: Stigma Analysismentioning

confidence: 99%

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

Abdulai¹,

Howard²,

Yong³

et al. 2022

JMIR Hum Factors

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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.

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Stigmatizing and de-Stigmatizing Properties of Web Apps for Sexual Health-Related Conditions: A Scoping Review

Cited by 10 publications

References 51 publications

Sex, Pain & Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

Sex, Pain & Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

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

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

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Stigmatizing and de-Stigmatizing Properties of Web Apps for Sexual Health-Related Conditions: A Scoping Review

Cited by 10 publications

References 51 publications

Sex, Pain &amp; Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

Sex, Pain &amp; Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

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

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

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Product

Resources

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Sex, Pain & Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

Sex, Pain & Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia