Addressing online-facilitated stigma: a co-design workshop among patients with lived experiences of dyspareunia.

Dyspareunia, the medical term for sexual pain, refers to recurrent discomfort experienced before, during or after sexual intercourse. 1 2 The prevalence of dyspareunia is not fully understood, as estimates vary depending on the population studied and the definitions used. Nonetheless, available evidence suggests that dyspareunia affects approximately 12% of females, 3 4 3% of males 5 and an unknown number of gender-diverse individuals. Dyspareunia can significantly impact a person’s physical health, self-image, 4 anxiety and stress levels, 4 6 7 body image 4 7 and romantic relationships. 4 Notably, the concept of dyspareunia and related symptoms is commonly accompanied by stigma, 8 9 a social phenomenon characterised by negative attitudes, shame or disapproval directed toward individuals or groups with certain health conditions. 10 Stigma related to dyspareunia often manifests in three primary forms, including public, structural and internalised stigma. Public stigma refers to widespread negative stereotypes and societal disapproval of people who experience dyspareunia. 11 Structural stigma occurs when public stigma and the negative attitudes associated with it are embedded into policies and laws. 11 Finally, internalised stigma occurs when individuals adopt these negative beliefs and apply them to themselves, leading to feelings of shame, guilt and other negative emotions. 11 Due to the personal nature of dyspareunia, individuals may be more predisposed to internalised stigma. They may also be predisposed to public and structural stigma as discussions of dyspareunia enter the public domain. Given the various types of stigma that impact people with dyspareunia, they often feel excluded and are more likely to avoid seeking care from healthcare professionals, which can lead to poor health outcomes. 8 12 13 As internet usage continues to surge across the world, 14 many individuals have turned to online platforms as an alternative or complementary source of sexual health information and services. 15 16 This is especially relevant for individuals with sexual health conditions that are often perceived as stigmatising or embarrassing to discuss in face-to-face interactions. 17 With an estimated 59% of the global population now accessing the internet, 14 digital health platforms have created opportunities for individuals to obtain sexual health information and services without the need for in-person interactions. 15 While online platforms enhance healthcare access and enable anonymous engagement with sexual health resources and services, 18 19 there is concern that their design may inadvertently reinforce stigma among end users. 20 This challenge is further compounded by the fact that those responsible for the design and development of digital health interventions (ie, software designers) may not fully understand the complexities of stigma related to dyspareunia or how certain design choices could trigger, perpetuate or exacerbate stigma. Design and content choices made by developers may unintentionally reinforce public stigma. This can undermine well-being and exacerbate health inequities among individuals who rely on online platforms as alternative sources of healthcare. 20 22 For instance, visual elements such as images that fail to reflect body, racial or gender diversity may alienate users and perpetuate marginalisation. In contrast, inclusive design features such as representative imagery and inclusive language may help mitigate emotional harm 23 and promote psychological safety. To address this challenge, our study builds on prior qualitative work with individuals affected by dyspareunia 24 and applies a co-design methodology, a participatory approach that engages end users as creators, to identify how online platforms can be designed to actively reduce stigma and improve the digital health experience for this population. By inviting participants to design visual layouts of stigma-sensitive digital interfaces, we aimed to identify patient-driven strategies for creating more inclusive, supportive and destigmatising sexual health resources.

We conducted three co-design workshops among 14 participants, including individuals with lived experience of dyspareunia and those whose partners were affected by it. The workshops were held online, organised into two groups of five and one group of four. Although we initially planned to conduct in-person workshops, we transitioned to an online format due to challenges in convening participants from outside the Greater Vancouver area. Co-design is a participatory design methodology in which end users actively contribute to the development of solutions intended for their own use. 25 26 In this study, participants moved beyond providing verbal insights by creating design prototypes, which are visual representations (eg, web interfaces) that illustrate the structure, features and intended user experience of an online platform aimed at reducing stigma. These prototypes reflected the ideas generated during the co-design workshops. This approach enabled participants to reflect on their personal experiences and translate them into tangible design concepts. We selected co-design workshops as our data collection method since they are widely recognised as an effective approach for developing patient-centred digital health interventions with strong potential for real-world adoption. 25 26 While patients were engaged in co-creating the design prototypes, they and/or anyone from the geneal public were not involved in the design, or conduct, or reporting, or dissemination plans of this research. Participants were recruited through a provincial health volunteer online platform and newsletters from major urban healthcare facilities in Western Canada. Eligibility criteria included a person who has experienced or is affected by the experiences of sexual pain, basic computer literacy and prior use of web-based health information or services. Participants were excluded if they were experiencing active pain episodes or were hospitalised at the time of data collection. This criterion was intended to minimise emotional or physical burden and to ensure that individuals could fully engage in the creative and reflective tasks required by the co-design process. Ethical approval was obtained from the University of British Columbia’s Behavioural Research Ethics Board. All participants provided written informed consent prior to their participation. Data collection occurred in two phases: (1) individual design sessions conducted in preparation for the codesign workshop and (2) group codesign workshops. Each phase is described in detail below. While patients were engaged in cocreating the design prototypes, patients or the public were not involved in the design, conduct, reporting or dissemination plans of the findings from this research Prior to the co-design workshop, each participant took part in an individual design session, during which they were asked to ‘create a design for a website addressing dyspareunia and the potential stigma surrounding the topic’, as stated in our instructions. To promote equal opportunity for participants to successfully communicate ideas, we used an online graphic design platform, Canva, 27 to create individual design prototypes. In preparation for the individual sessions, we produced a 10 min instructional video accompanied by detailed written instructions to facilitate participants’ use of Canva for prototype creation. Participants were also given the opportunity to seek clarification and ask questions regarding the instructional materials. Although basic computer literacy was required, no prior artistic or graphic design experience was necessary. To provide context for the activity, participants were provided with a link to a sample sexual health online platform, which served as a visual reference for their design work on Canva. However, they were encouraged to be creative and to base their designs on personal preferences and lived experiences. Participants were also invited to contact the research team with any questions or challenges encountered during the design process. After all participants submitted their individual prototypes, they were invited to take part in a virtual co-design workshop. Participants were divided into three small groups. Three separate days were proposed for the participants to choose which co-design session to attend. The co-design session proceeded once all three sessions were filled up. Our instructions stated that each participant was expected to ‘explain [their] individual website design that aims to alleviate potential stigma associated with dyspareunia’. Each member was asked to present their prototype and explain the rationale behind their design choices, including the selection of images, colour schemes and content organisation. Online supplemental file 1 provides more information that was given to the participants ahead of the individual and group design sessions. Following the individual presentations, each group was instructed to collaborate and ‘incorporate key elements from each individual’s design into a final group prototype’, which represents a destigmatising online platform. After completing their design prototypes, each group was given the opportunity to reflect on their work and discuss how their designs could address stigma. They explained why specific design elements were selected from individual prototypes and how these choices reflected shared priorities and perceptions about reducing stigma in digital health platforms. All sessions were conducted via Zoom and lasted approximately 2 hours each. The co-design workshops were audio-recorded and transcribed using Temi, an online transcription service. 28 Both the transcripts and design prototypes (individual and group versions) were imported into NVivo 29 for qualitative analysis. Data collection was conducted between July and September 2023, with each workshop held on a separate day. Figure 1 shows a schematic flow of the data collection process. The data were analysed using a thematic analysis approach. The first and second authors independently reviewed the design prototypes alongside the transcripts from participants’ reflections on their design prototypes. The review of the design prototypes was based on Rose’s (2016) critical visual methodology, which emphasises the compositional interpretation of visual materials. 30 In this approach, we critically evaluated design elements such as imagery, colour schemes, layout and spatial organisation on individuals’ and groups’ prototypes to understand how visual design was used to express strategies for reducing stigma. 30 Codes were generated from the visual analysis of the design prototypes and the transcripts from participants’ reflections on their respective prototypes. We compared, discussed and collaboratively refined codes to ensure coherence and accurate representation of participants’ perspectives and design intentions. Relevant themes were developed through constant comparison and organised into broader antistigma strategies for designing web-based interventions for dyspareunia. Participants’ discussions were analysed alongside their design prototypes, with discrepancies in interpretation between the first and second author resolved through consultation with the third author.

A total of 14 participants from Western Canada took part in the co-design workshop. Participants’ ages ranged from 22 to 61 years, with half under the age of 30. Of the 14 participants, 7 identified as Caucasian, 4 as Middle Eastern, 2 as South Asian and 1 as Asian. Regarding sex assigned at birth, 12 participants were assigned female and two were assigned male. Furthermore, of the 14 participants, 10 identified as cisgender women, 2 as cisgender men and 2 as non-binary. Table 1 presents the demographic characteristics of the participants. Analysis of the participant-created design prototypes as well as the transcripts from their reflections on each prototype revealed four overarching themes that reflect key strategies for mitigating stigma on sexual health platforms. Where applicable, we referenced the various design prototypes ( figures2 4 ) in the themes. To reduce public and internalised stigma, participants emphasised the importance of providing comprehensive and accessible information on dyspareunia. This was reflected in prototypes 1 and 2 ( figures2 3 ), where participants included content on underlying causes, diverse treatment options and common misconceptions surrounding dyspareunia. They recommended that online platforms integrate a variety of educational resources, including multimedia content, as well as dedicated sections for support groups and personal narratives from individuals who have experienced dyspareunia. When you see someone who is going through something similar and they're so open with talking about it and sharing their experience… it makes it easier for you to talk about because you're like, oh, hey, look at how comfortable they are talking about it (female). Participants emphasised the need for website language that directly addresses the topic of dyspareunia to help prevent both stigma from the general public and internalised stigma experienced by individuals. One participant stated that, The use of ambiguous or indirect language can be problematic because you're not necessarily normalizing [dyspareunia] and you're kind of beating around the bush, which maybe isn't the right approach (female). Moreover, participants suggested including information for partners and family members, recognising that dyspareunia affects interpersonal dynamics. This was particularly noted by a participant whose partner experienced dyspareunia. According to the participants, this approach not only contributes to destigmatisation but also fosters a sense of community, helping to prevent individuals from feeling isolated within their support networks. One participant explained, It’s not just the person who experiences [dyspareunia]. It’s also the people around them, and they might be really pleased to see that there’s something to help them communicate and navigate (female). Participants expressed the need to include representations of diverse cultural backgrounds, sex and gender identities, body types, age groups, languages and various skin tones. These priorities were clearly reflected in the image choices across design prototypes 1–3 ( figures2 4 ). When participants were asked to reflect on the choice of images and icons, one participant noted, We included the trans logo as well as the woman with the hijab because it’s not just women who have vaginas, uterus, endometriosis, there’s a lot of trans men who struggle with painful sex (female). Participants also indicated that inclusive phrases such as ‘you’re not alone’ can help reduce internalised stigma and lower barriers that minority groups may face when accessing digital health resources. Some of these inclusive phrases were captured in design prototypes 2 and 3 (ie, figures2 4 ). They also noted the importance of designing websites that are accessible to individuals with varying levels of technological and English language literacy. One participant explained, Web developers can offer inclusivity by being mindful of the populations that are reading it. Since we don't know [users’] educational or cultural background, and English might be a second or third language, you want to use language that’s accessible (female). While participants acknowledged the importance of providing comprehensive information (theme 1), they also highlighted the need to present content discretely on digital platforms, as some users may access these resources in public or shared spaces. One participant suggested that, The main page can be a little bit more euphemized and general about sexual health. And then as you go further into the website, you get more specific [about dyspareunia] (female). To protect the privacy of online users, participants recommended that home pages include customisable layouts, language or imagery that avoid explicit references to dyspareunia. However, many participants preferred direct and explicit language (theme 1); thus, a balance is needed between discretion and clarity to ensure users feel safe and well-informed. The participants also noted the importance of allowing users to remain anonymous during online interactions, emphasising that anonymity can encourage open dialogue on sensitive issues related to dyspareunia. One participant stated, People may not necessarily want to identify themselves when on a website like this, so you need to make sure that the website do not end up identifying them to any third party (male). Participants indicated that providing options for anonymity can help reduce barriers to accessing health-related websites and enhance users’ comfort. It also promotes equitable access to information and fosters a sense of belonging within an online community. Participants across all three groups recommended adding interactive features such as educational tools and community support forums to raise awareness and reduce the public and internalised stigma surrounding dyspareunia. A recurring suggestion from all three groups involved the addition of moderated discussion forums to encourage user interaction and promote a sense of community. While participants could not accurately depict user-interaction features on their design prototypes, they nevertheless indicated how important it was to integrate these into their design prototypes. One participant stated, I think there’s a lot of power in destigmatizing issues like this when you have a community of like-minded individuals to talk to. So having a section where people can connect with each other or talk with each other will be helpful (male). Participants also recommended self-assessment quizzes and interactive anatomy diagrams to improve users’ understanding of dyspareunia, as demonstrated in design prototype 2 ( figure 3 ). One participant stated, One of the things I really liked were the diagrams… you could click on them, and it would explain the different parts of the anatomy and why that was hurting (female). This interactive feature was identified as particularly useful in helping users gain a clearer understanding of how conditions such as endometriosis manifest within the body.

This study employed a patient-centred approach by engaging individuals with lived experiences of dyspareunia, along with partners of those affected, to create design prototypes for an online platform intended to reduce stigma. We believe the findings of this study will contribute to a deeper understanding of how digital platforms can be leveraged to support the destigmatisation of not just dyspareunia but other stigmatised sexual and reproductive health conditions. The four key themes that emerged from this study are consistent with prior research on user engagement in digital health projects. 31 33 These previous studies urged intervention developers to develop accurate and accessible online information that increases awareness of topics related to sexual health. These prior studies also recommended that online platforms be sensitive to people’s concerns about privacy while accessing web-based content. 31 33 Unlike our prior work on addressing stigma in digital health interventions, 24 34 35 this study enabled participants to take an active role in shaping stigma-reducing design strategies through a structured co-design process. These patient-centred, collaborative approaches encouraged participants to see themselves as experts in their own experiences, 36 fostering mutual decision-making, creativity and deeper engagement in the design process. 36 40 This resulted in the development of resources that are more responsive to users’ needs. 36 41 42 These insights highlight the importance of involving end users in the development of digital health resources, particularly for sensitive topics such as sexual health. Our study also highlights the under-representation of male perspectives in sexual pain research. Although only two male participants were involved, limiting generalisability, their perspectives shed light on an underexplored dimension of dyspareunia, which is often framed as a female-specific health issue. Their contribution may help initiate broader recognition of the condition as relevant across sex and gender identities. However, given the limited representation of males in this study, further studies are needed to explore male experiences of dyspareunia and how web-based platforms can support destigmatisation efforts. A key observation from the co-design workshop was that many valuable ideas for destigmatising platform design were not fully reflected in their group’s design prototypes. This discrepancy may be attributed to time constraints, or limited familiarity with the design software, or the inability of participants to fully translate all their ideas into the design prototypes. Nevertheless, the four key themes identified: providing extensive information on dyspareunia, designing for inclusivity, protecting users’ identities and offering interactive features closely align with existing literature on promoting user engagement in digital health platforms. 31 33 Although these destigmatising design strategies have yet to be implemented, our findings offer guidance for developers of sexual health interventions in creating online platforms that are responsive to user needs while minimising the risk of reinforcing stigma. 43 For example, strategies such as using culturally sensitive content, ensuring accessibility for diverse users and designing user-friendly web interfaces can improve engagement and provide clear, relevant information that demystifies dyspareunia. 34 Similarly, incorporating privacy-focused design elements that protect users’ anonymity can be especially beneficial for marginalised populations, offering a safe environment to explore resources, ask questions and connect with others facing similar challenges. This approach can empower users to seek information without fear of judgement or discrimination, 32 44 which is especially important for those navigating sensitive or stigmatised disorders like dyspareunia. Furthermore, participants suggested that interactive features such as discussion forums, anatomical diagrams and self-assessment tools could enhance users’ experience, facilitate engagement with web-based content and demystify misconceptions that often fuel stigma. Prior studies suggest that these tools can foster interpersonal interaction among users. 45 46 For individuals experiencing dyspareunia, anonymous interaction through digital platforms may not only improve understanding and engagement with relevant content but also help reduce feelings of isolation and increase awareness of sexual health conditions. Given that public stigma remains a significant barrier to accessing sexual health services, 47 50 the design strategies recommended by participants can offer valuable guidance on developing more inclusive and effective online platforms. Incorporating these patient-informed approaches may facilitate open conversations about dyspareunia and extend the reach of sexual health resources to individuals who might otherwise avoid traditional healthcare settings. Moreover, online platforms can serve as avenues for providing patient-centred information that demystifies dyspareunia, addressing the myths and misconceptions that often perpetuate stigma and hinder care. For instance, providing comprehensive information on dyspareunia may enhance the accessibility of accurate health information and foster non-judgmental discussions. Thus, destigmatising online resources has the potential not only to reduce informational and psychological barriers to care but also to advance health equity by supporting marginalised populations who often face stigma and discrimination within conventional healthcare settings. 12 48 49 Finally, this study’s use of a co-design methodology aligns with the growing emphasis on involving end users in the development of digital health interventions. 51 This collaborative process generated valuable insights into how platforms can more effectively reflect and address the lived experiences of individuals with dyspareunia. The use of a co-design workshop for this study provided participants the space to create visual representations of design aspects that were most important in addressing the stigma of dyspareunia. These prototypes could serve as foundational products for initiating the design of web-based interventions on sexual health. Despite this strength, the study has several limitations that should be considered when interpreting or applying the findings. First, our sample consisted mostly of participants whose gender identities matched their sex assigned at birth, with the majority of them being female. Therefore, sampling more cismale and gender-diverse participants is needed in future studies. Second, the use of Zoom and Canva in this study may have inadvertently excluded individuals who experience stigma but lacked access to computers or stable internet connectivity. Although these digital platforms enabled participation from individuals across Western Canada and provided a degree of anonymity, they may have created participation barriers for individuals with limited access or lower levels of digital literacy. While participants created their own design prototypes in the co-design workshop, they could not translate all ideas onto the design prototypes. Some of these ideas expressed during the reflection session were quite useful but were not reflected in the prototypes. This could have been attributed to participants’ limited familiarity with the design tools or due to time constraints. Future studies may consider offering longer or multiple co-design sessions to give participants more time and support to fully express their ideas visually. Finally, while the sample website provided useful context and inspiration for the co-design exercise, relying on a single example may have influenced participants’ responses, potentially limiting originality. Future research could include multiple reference sites to encourage a broader range of responses.

With the increasing prevalence of internet use, web-based digital health platforms offer promising opportunities to improve access to resources for individuals experiencing dyspareunia. 14 15 20 Our study presents practical, patient-led strategies for designing online platforms that minimise the unintended perpetuation of stigma within digital health platforms. We believe that these findings can guide the development of inclusive and stigma-sensitive platforms that improve healthcare access, particularly for marginalised populations who frequently face stigma at the individual, community and systemic levels. While this study focuses on dyspareunia, the design principles identified may be applicable to online platforms addressing other stigmatised health conditions.