Endometriosis is a chronic inflammatory condition characterized by the presence of endometrial-like tissue outside the uterus [1]. The symptoms may vary, but they often include severe pelvic pain, painful periods, painful sexual intercourse, and infertility [2]. Despite affecting approximately 10% of reproductive-aged women and girls, and an unmeasured number of gender diverse people, endometriosis remains significantly underdiagnosed and misunderstood [1,3]. Although diagnostic delays average 5 years in Canada, some individuals have reported a formal diagnosis taking up to 20 years [3,4]. The invisibility of symptoms, stigma surrounding sexual and menstrual health, and dismissal of women’s pain all contribute to misinformation and present barriers to timely diagnosis and treatment [3,5,6]. Ultimately, these aspects all affect the mental and physical health of those with endometriosis. Furthermore, racialized populations may experience additional barriers to endometriosis diagnosis and care [7]. For instance, one study found that East and/or Southeast Asian women were 8 times more likely than their White counterparts to experience severe disease before being referred to more specialized care [8].

Globally, the COVID-19 pandemic further exacerbated the gaps in endometriosis care as it upended the health care system, causing resource redirection toward patients with COVID-19 and interrupting the continuity of care for patients with chronic conditions like endometriosis [9,10]. In Canada, appointments and surgeries for people with endometriosis were postponed or canceled as hospitals became overwhelmed and health care providers transitioned to virtual environments [11]. Concurrently, mandatory self-isolation measures dramatically altered people’s levels of social support, contributing to worsening psychological symptoms such as depression and anxiety [12]. Additionally, the COVID-19 pandemic was marked by a global rise in anti-Asian sentiment, with people of Asian descent reporting increasing episodes of violence and feelings of vulnerability to discrimination [13].

Given these compounding factors, our team conducted a study—the EndoPhoto Study—with 22 South, East, and/or Southeast Asian cisgender women with endometriosis in Canada to better understand the experiences of people in these communities during the COVID-19 pandemic. This study used photovoice, an art-based methodology that provides opportunities to use photos to share experiences and emotions related to stigmatized or hidden conditions [14]. Results from the EndoPhoto Study are published elsewhere [15,16] and highlight several key themes. These themes include the ways in which the pandemic exacerbated feelings of isolation and created additional challenges in accessing health care for those living with endometriosis. Participants also built resilience during the pandemic by accepting social support from peers, advocating for themselves in health care interactions, and taking empowering actions to self-manage their conditions. More details on the methodology and data analysis of the EndoPhoto Study are available in other studies [15,16]. The EndoPhoto Study was approved by the University of British Columbia Children’s and Women’s Research Ethics Board (reference number: H22-02390).

Findings from the EndoPhoto Study and our team’s previous research highlight the importance of sharing evidence that validates the experiences of people affected by endometriosis, helps people feel they are not alone, fosters hope, and recognizes the strengths of those affected. Our team’s pre-existing website showcased EndoPhoto results via images and quotes (EndoPhoto website [17]). The original website was co-created by researchers, clinicians, and patient partners to disseminate information and resources related to endometriosis. As guided by our Patient Research Advisory Board (PRAB; a group of people with lived experience of endometriosis), we chose to disseminate the EndoPhoto Study findings and EndoPhoto website to a public audience through a social media campaign. The goal of the campaign was to amplify the stories shared by Asian women regarding their experiences during the COVID-19 pandemic while focusing on disrupting silence related to the medical dismissal, social isolation, and cultural stigma of pelvic pain and endometriosis. As such, we recognized the relevance of using a trauma-informed approach to develop and implement the campaign. See Figure 1 for a project overview and the campaign development process.

Our primary objective is to provide information on the steps we took when developing a social media campaign informed by the principles of a trauma-informed approach. Our secondary objective is to share the engagement results of the social media campaign. The target audience includes individuals and teams interested in trauma-informed social media campaigns, particularly those disseminating health-adjacent research findings. We begin by sharing information about our team, followed by information on trauma-informed approaches and social media dissemination. Lastly, we share the four steps that can be taken when developing a trauma-informed social media campaign: (1) frame the campaign, (2) create content and manage the campaign, (3) measure campaign impact, and (4) conduct postcampaign reflections.

We are a multigenerational team with diverse genders, sexualities, and ethnicities, and are committed to improving the understanding and awareness of endometriosis through cutting-edge interdisciplinary research and knowledge translation. We recognize the importance of disseminating intentionally curated, evidence-based, and nuanced research findings to the endometriosis community and the public. Our team includes researchers, clinicians, health care trainees, and patient partners who are part of our PRAB. We are affiliated with the Endometriosis and Pelvic Pain Laboratory at the University of British Columbia, Canada.

The formal conceptualization of trauma-informed care was first introduced by Harris and Fallot [18] in the context of mental health and substance use treatment systems. However, these principles have long-standing roots in community-based practices, including those within Indigenous traditions [19]. Since its inception, trauma-informed care has been adapted to various disciplines, with the framework of the Substance Abuse and Mental Health Services Administration (SAMHSA) often cited [20]. Trauma-informed approaches often acknowledge that trauma is widespread, and they actively support creating systems that promote physical and psychological safety [20].

SAMHSA defines trauma broadly, encompassing experiences at individual and structural levels that can be considered emotionally harmful [20]. SAMHSA’s trauma-informed approach rests on four key assumptions: (1) realizing that trauma is widespread and can deeply affect individuals, communities, and societies; (2) recognizing the signs of trauma; (3) responding to trauma by integrating trauma-informed approaches; and (4) resisting retraumatization [20]. These assumptions are operationalized through six guiding principles: (1) safety; (2) trustworthiness and transparency; (3) peer support; (4) collaboration; (5) empowerment, voice, and choice; and (6) cultural, historical, and gender issues [20].

In health care settings, trauma-informed approaches in the provision of care have been shown to improve negative mental health symptoms and increase patient satisfaction, especially among populations with histories of trauma or medical dismissal [21]. Trauma-informed approaches are particularly relevant in sexual and reproductive health, where patients are frequently asked to disclose sensitive information and are more likely to have experienced prior health care–related trauma [22]. Trauma-informed approaches are relevant for people with endometriosis as they have described feelings of shame and emotional distress related to their health care encounters where their symptoms have been diminished, normalized, or dismissed [23]. Interactions with health care systems and providers—as well as with broader public discourses that minimize people’s experiences of endometriosis—have been further characterized as harmful, disempowering, and socially isolating. These experiences highlight the importance of using a trauma-informed approach that prioritizes safety, empowerment, and collaboration [23].

Social media is broadly defined as a digital space centered around information sharing and human connection [24]. Social media has increasingly become a pervasive aspect of everyday life and a powerful knowledge dissemination tool where various social media platforms, such as Facebook and TikTok, have been used by the health care community for patient education, peer support, and advocacy [25-27]. Social media platforms are participatory and easy to access, allowing the dissemination of information and rapid engagement of large, globally-connected audiences [28]. Content shared on social media platforms can provide unique opportunities to build a community, share experiences, and influence public health discourse [26].

There are also challenges with social media. For example, the nature of instant access to information and a lack of fact-verifying measures can lead to the unchecked and rapid spread of misinformation and disinformation to the public. Moreover, algorithms may incidentally lead to retraumatization and feelings of stigmatization [29-31]. Furthermore, considering people often consume social media content in isolation, it is difficult for content creators to recognize potential traumatization or retraumatization of viewers, highlighting the importance of intentionally creating and sharing content.

As knowledge dissemination of health-adjacent information increasingly moves onto social media platforms, trauma-informed approaches appear particularly relevant and potentially useful when working in these virtual environments. While there is limited guidance for applying trauma-informed approaches in digital spaces [32], the literature is emerging. We drew upon 3 frameworks that highlighted the potential of these approaches to reduce harm when sharing health-adjacent information digitally.

First, Josephs et al [33] emphasized 3 key pillars for digital trauma-informed design specific to sexual and reproductive health: privacy and confidentiality, intuitive and representative designs, and inclusive language. Second, trauma-informed computing, introduced by Chen et al [34], presents a framework guiding the adaptation of trauma-informed principles to digital design. This framework recognizes that digital tools can cause or exacerbate trauma and seeks to enable safer technological experiences [34]. Key adaptations of trauma-informed principles for online settings include safety, trustworthiness, peer support and collaboration, empowerment and choice, and cultural sensitivity.

Lastly, Scott et al [30] built upon the framework from Chen et al [34], adding specific aspects and examples to consider when applying trauma-informed approaches to social media engagement. The framework from Scott et al [30] outlines six guiding principles: (1) safety (eg, safe data collection and storage, and relaxing colors); (2) trustworthiness and transparency (eg, transparent about what user data are collected and why); (3) peer support (eg, protection for those sharing their unique stories); (4) collaboration and mutuality (eg, co-design with people having lived experience); (5) empowerment, voice, and choice (eg, no real names); and (6) cultural and historical gender issues (eg, acknowledge algorithmic biases).

We used platform-integrated analytics (Instagram Insights and Pinterest Analytics) to monitor primary performance indicators. The metrics included reach, engagement (likes, shares, comments, profile visits, and link clicks), and website page visits (for definitions, see Table 2). We reviewed these metrics throughout the campaign to enable real-time optimization of posting frequency and timing, as well as advertising spend based on platform recommendations and observed audience behavior. Over the 31-day campaign, the website attracted 6326 unique users (for additional engagement measures, see Table 3).

Instagram generated both the greatest volume of sessions and the longest dwell time. Pinterest’s shorter dwell time likely reflected the account’s infancy (new profile, first campaign, and algorithmic learning period). The high number of impressions was largely attributed to 3 posts that “went viral” during the campaign, meaning they received over 1 million views each (Figures 12-14). These posts reflected messages of support, resiliency, and healing. Advertisements drew in the largest number of platform users to the page, accounting for most of the sessions and engagement, with arguably the least human resources.

This manuscript describes the development of a trauma-informed social media campaign designed to disseminate findings from the EndoPhoto Study, which explored the experiences of South, East, and Southeast Asian women living with endometriosis in Canada during the COVID-19 pandemic. We intend for this work to serve as a guide for others seeking to share their research findings through social media, with broader applicability for those interested in trauma-informed campaign development. By integrating trauma-informed principles, the campaign not only centered the voices of underrepresented communities but also demonstrated the potential for digital platforms to promote trauma-informed knowledge dissemination.

Upon reviewing our engagement metrics, we found that images with quote-based content (as opposed to image- or quote-only–based content) produced the highest click-through rates on both platforms; announcement posts (eg, study overview) generated the greatest engagement; and Instagram advertisements, particularly images with quotes, outperformed other creative formats (Table 4). Although it is challenging to measure how the content truly impacted viewers, some of these indicators may provide insights into the meaning viewers garnered from the content. For example, the option to “save” content on Pinterest may suggest that some of the posts resonated enough for viewers to want to share or review the content at a later date, perhaps indicating a feeling of added value.

At this time, we are unable to say definitively as to why some post types had higher levels of reach and impressions (outside of advertisements). To the best of our knowledge, there is no research literature that shows which specific types of social media content tend to perform better, as it is highly based on the content and target audience. Some social media blogs have suggested that reels, carousel-type posts or those that have multiple images (our announcement posts), and relatable content tend to have higher engagement [40]. Although these content categories are broad, they could indicate that working as a team that has lived knowledge, clinical knowledge, and social media knowledge proved beneficial in understanding the types of content that may be engaging for our audience.

While trauma-informed principles are increasingly recognized in clinical and community settings, their application to digital media, particularly social media, remains largely underexplored. This tutorial highlights how principles, such as collaboration, safety, trustworthiness, voice, and cultural and gender sensitivity, can be applied in online spaces to mitigate harm and increase engagement. Additionally, this project helps to address the critical gap in the representation of racialized individuals, particularly Asian women, in endometriosis advocacy and online discourse.

One unanticipated lesson learned was the suppression of women’s sexual and reproductive health information on Meta platforms. A recent report published by the Center for Intimacy Justice [41] highlighted that a bias exists on major Meta platforms, where organizations felt that their content and advertisements related to women’s sexual and reproductive health, including fertility and pelvic health, were being censored and overmoderated. Social media algorithms, driven by artificial intelligence, limited content visibility when posts included “sensitive” health-related terms or were deemed to violate vague platform policies such as Meta’s “Personal Health and Appearance” guidelines. This report aligned with our experience, as our content was flagged as not aligning with community standards owing to its “negative” nature and association with health care. This flag necessitated a shift toward resilience-focused and positively framed messaging only, which may have constrained the full scope of participant narratives.

Considering that platform selection was intentional, using only Instagram and Pinterest (chosen for their visual nature and perceived safety) may have excluded audiences who primarily engage with platforms like TikTok, X (formerly Twitter), or Facebook. Additionally, the metrics used to gauge success, such as views, impressions, and likes, offer limited insight into true impact. While some posts featuring animals gained viral traction, it is unclear whether the viral nature was due to their relevance to endometriosis or due to the important role that animals can play in people’s lives, prompting questions about whether high engagement with content truly reflected increased awareness or understanding of endometriosis specifically.

In addition, because the campaign relied on Meta-owned platforms, our content was influenced by algorithmic restrictions that often suppressed posts containing sexual or reproductive health terms. This may have unintentionally narrowed the range of experiences we were able to highlight. While the campaign focused on the voices of Asian women, our sample does not capture the full diversity of people living with endometriosis, including those with different cultural backgrounds, gender identities, or varying levels of access to digital spaces. Finally, even with trauma-informed strategies in place, sharing health-related stories online carries the risk of re-exposure or secondary trauma for some viewers, especially when content reflects their own experiences.

The key takeaways are as follows: