{"paper_id":"8bb9e299-7662-462b-b6f1-0dc298d98513","body_text":"JMIR Preprints Marshall et al\nDeveloping a trauma-informed social media campaign\nto disseminate endometriosis specific qualitative arts-\nbased research findings: A tutorial\n Kerry Marshall, Hargun Dhillon, A. Fuchsia Howard, Heather Noga, Grace J Yang,\nWilliam Zhu, Jessica Sutherland, Sarah Lett, Anna Leonova, Paul Yong, Natasha L\nOrr\nSubmitted to: Journal of Medical Internet Research\non: September 04, 2025\nDisclaimer: © The authors. All rights reserved. This is a privileged document currently under peer-review/community\nreview. Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for\nreview purposes only. While the final peer-reviewed paper may be licensed under a CC BY license on publication, at this\nstage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nTable of Contents\nOriginal Manuscript ....................................................................................................................................................................... 5\nSupplementary Files ..................................................................................................................................................................... 37\nFigures ......................................................................................................................................................................................... 38\nFigure 1 ...................................................................................................................................................................................... 39\nFigure 2 ...................................................................................................................................................................................... 40\nFigure 3 ...................................................................................................................................................................................... 41\nFigure 4 ...................................................................................................................................................................................... 42\nFigure 5 ...................................................................................................................................................................................... 43\nFigure 6 ...................................................................................................................................................................................... 44\nFigure 7 ...................................................................................................................................................................................... 45\nFigure 8 ...................................................................................................................................................................................... 46\nFigure 9 ...................................................................................................................................................................................... 47\nFigure 10 .................................................................................................................................................................................... 48\nFigure 11 .................................................................................................................................................................................... 49\nFigure 12 .................................................................................................................................................................................... 50\nFigure 13 .................................................................................................................................................................................... 51\nFigure 14 .................................................................................................................................................................................... 52\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nDeveloping a trauma-informed social media campaign to disseminate\nendometriosis specific qualitative arts-based research findings: A tutorial\nKerry Marshall1, 2* RN, MN; Hargun Dhillon3*; A. Fuchsia Howard1, 2 RN, PhD; Heather Noga2 MA; Grace J Yang3\nBsc; William Zhu3 Bsc; Jessica Sutherland4 BA; Sarah Lett4; Anna Leonova3, 2 Msc; Paul Yong3, 2 MD, PhD; Natasha\nL Orr1, 3, 2 PhD\n1 School of Nursing University of British Columbia Vancouver CA\n2 Women’s Health Research Institute BC Women’s Hospital & Health Centre Vancouver CA\n3Department of Obstetrics and Gynecology Faculty of Medicine University of British Columbia Vancouver CA\n4Patient Research Advisory Board Endometriosis and Pelvic Pain Lab University of British Columbia Vancouver CA\n*these authors contributed equally\nCorresponding Author:\nA. Fuchsia Howard RN, PhD\nSchool of Nursing\nUniversity of British Columbia\nT201 2211 Wesbrook Mall\nVancouver\nCA\nAbstract\nTrauma-informed approaches promote the creation of systems that prioritize safety and empowerment to improve patient well-\nbeing. These approaches are especially important in sexual and reproductive healthcare, where patients are often asked to\ndisclose sensitive and personal information. This disclosure is particularly relevant in the context of endometriosis, a condition\nthat affects 10% of reproductive-aged women and causes debilitating pelvic pain. Our team led a trauma-informed social media\ncampaign to raise awareness and improve understanding of endometriosis by sharing research findings from a photovoice study\nfocusing on Asian women’s experiences of endometriosis during the COVID-19 pandemic in Canada (EndoPhoto Study). In this\nmanuscript, we describe how we adapted and applied trauma-informed approaches to the development and implementation of the\nsocial media campaign by following five principles: support and collaboration; trustworthiness and transparency; safety;\nempowerment and voice; and cultural and gender sensitivity. We co-designed this campaign with patient partners with lived\nexperience of endometriosis to facilitate collaboration and mutuality. Additionally, we shared details about the funders of this\nstudy to increase trust and transparency, moderated comments and de-identified images to promote participant safety, chose safer\nplatforms to enhance empowerment and voice, and avoided stereotypes and shared authentic experiences of Asian people with\nendometriosis to support cultural and gender sensitivity. The campaign launched on Instagram and Pinterest in March 2025 to\ncoincide with Endometriosis Awareness Month. The social media campaign received 8,540,528 total impressions over the course\nof the month and had a 6.23% and 1.4% engagement rates on Instagram and Pinterest, respectively.\n(JMIR Preprints 04/09/2025:83491)\nDOI: https://doi.org/10.2196/preprints.83491\nPreprint Settings\n1) Would you like to publish your submitted manuscript as preprint?\nPlease make my preprint PDF available to anyone at any time (recommended).\nPlease make my preprint PDF available only to logged-in users; I understand that my title and abstract will remain visible to all users.\nOnly make the preprint title and abstract visible.\nNo, I do not wish to publish my submitted manuscript as a preprint.\n2) If accepted for publication in a JMIR journal, would you like the PDF to be visible to the public?\nYes, please make my accepted manuscript PDF available to anyone at any time (Recommended). \nYes, but please make my accepted manuscript PDF available only to logged-in users; I understand that the title and abstract will remain visible to all users (see Important note, above). I also understand that if I later pay to participate in JMIR’s PubMed Now! service service, my accepted manuscript PDF will automatically be made openly available.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nYes, but only make the title and abstract visible (see Important note, above). I understand that if I later pay to participate in JMIR’s PubMed Now! service service, my accepted manuscript PDF will automatically be made openly available.\nNo. Please do not make my accepted manuscript PDF available to anyone. I understand that if I later pay to participate in JMIR’s PubMed Now! service, my accepted manuscript PDF will automatically be made openly available.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nOriginal Manuscript\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nTitle: Developing a trauma-informed social media campaign to disseminate endometriosis specific\nqualitative arts-based research findings: A tutorial \nMarshall, Kerry*, MN, PhD Candidate, (1, 2) 0000-0002-1327-0363 \nDhillon, Hargun* (3), 0009-0009-9673-8520\nHoward, A. Fuchsia, PhD, (1, 2), 0000-0001-5704-1733 \nNoga, Heather, MA, 0000-0002-3565-6072 (2)\nYang, Grace J, BSc, (3) 0000-0002-8219-523X\nZhu, William, BSc, (3) 0009-0005-4504-4706\nSutherland, Jessica, BA, 0000-0002-8229-2785, (4) \nLett, Sarah, 0009-0008-2944-8470, (4)\nLeonova, Anna, MSc, PhD Candidate, 0000-0002-7479-3352 (3) \nYong, Paul J, MD, PhD, 0000-0001-5521-3052 (2, 3)\nOrr, Natasha L, PhD, 0000-0002-7413-9369 (1, 2, 3)\n*co-first authors\nAffiliations: \n1. School of Nursing, University of British Columbia, Vancouver, Canada \n2. Women’s Health Research Institute, BC Women’s Hospital + Health Centre, Vancouver,\nCanada \n3. Department of Obstetrics and Gynecology, Faculty of Medicine, University of British\nColumbia, Vancouver, Canada \n4. Patient Research Advisory Board, University of British Columbia Endometriosis and Pelvic\nPain Lab, Vancouver, Canada \nCorresponding author: A. Fuchsia Howard, fuchsia.howard@ubc.ca, 604-822-4372, UBC School\nof Nursing, T201-2211 Wesbrook Mall, Vancouver BC, V6T2B5. \nKeywords: trauma-informed approach; social media; knowledge translation; endometriosis;\ninformation dissemination; content creation \nAbstract: Trauma-informed approaches promote the creation of systems that prioritize safety and\nempowerment to improve patient well-being. These approaches are especially important in sexual\nand reproductive healthcare, where patients are often asked to disclose sensitive and personal\ninformation. This disclosure is particularly relevant in the context of endometriosis, a condition that\naffects 10% of reproductive-aged women and causes debilitating pelvic pain. Our team led a trauma-\ninformed social media campaign to raise awareness and improve understanding of endometriosis by\nsharing research findings from a photovoice study focusing on Asian women’s experiences of\nendometriosis during the COVID-19 pandemic in Canada (EndoPhoto Study). In this manuscript, we\ndescribe how we adapted and applied trauma-informed approaches to the development and\nimplementation of the social media campaign by following five principles: support and\ncollaboration; trustworthiness and transparency; safety; empowerment and voice; and cultural and\ngender sensitivity. We co-designed this campaign with patient partners with lived experience of\nendometriosis to facilitate collaboration and mutuality. Additionally, we shared details about the\nfunders of this study to increase trust and transparency, moderated comments and de-identified\nimages to promote participant safety, chose safer platforms to enhance empowerment and voice, and\navoided stereotypes and shared authentic experiences of Asian people with endometriosis to support\ncultural and gender sensitivity. The campaign launched on Instagram and Pinterest in March 2025 to\ncoincide with Endometriosis Awareness Month. The social media campaign received 8,540,528 total\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nimpressions over the course of the month and had a 6.23% and 1.4% engagement rates on Instagram\nand Pinterest, respectively.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nBackground/Rationale\nEndometriosis is a chronic inflammatory condition characterized by the presence of\nendometrial-like tissue outside the uterus [1]. Symptoms may vary, though often include severe\npelvic pain, painful periods, painful sexual intercourse, and infertility [2]. Despite affecting\napproximately 10% of reproductive-aged women and girls, and an unmeasured number of gender\ndiverse people, endometriosis remains significantly underdiagnosed and misunderstood [1, 3].\nAlthough diagnostic delays average five years in Canada, some individuals have reported a formal\ndiagnosis taking up to 20 years [3, 4]. The invisibility of symptoms, stigma surrounding sexual and\nmenstrual health, and dismissal of women’s pain all contribute to misinformation and present barriers\nto timely diagnosis and treatment and ultimately affect the mental and physical health of those with\nendometriosis [3, 5, 6] . Furthermore, racialized populations may experience additional barriers to\nendometriosis diagnosis and care [7]. For instance, one study found that East and/or Southeast Asian\npeople were eight times more likely than their White counterparts to experience severe disease\nbefore being referred to more specialized care [8].\nGlobally, the COVID-19 pandemic further exacerbated the gaps in endometriosis care as it\nupended the healthcare system, causing resource redirection towards patients with COVID-19, and\ninterrupting the continuity of care for patients with chronic conditions like endometriosis [9, 10]. In\nCanada, appointments and surgeries for people with endometriosis were postponed or cancelled as\nhospitals became overwhelmed and healthcare providers transitioned to virtual environments [11].\nConcurrently, mandatory self-isolation measures dramatically altered people’s levels of social\nsupport, contributing to worsening psychological symptoms such as depression and anxiety [12].\nAdditionally, the COVID-19 pandemic was marked by a global rise in anti-Asian sentiment, with\npeople of Asian descent reporting increasing episodes of violence and feelings of vulnerability to\ndiscrimination [13]. \nGiven these compounding factors, our team conducted a study—the EndoPhoto Study—with\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\n22 South, East, and/or Southeast Asian cisgender women with endometriosis in Canada to better\nunderstand the experiences of people in these communities during the COVID-19 pandemic. This\nstudy employed photovoice, an arts-based methodology that provides opportunities to use\nphotographs to share experiences and emotions related to stigmatized or hidden conditions [14].\nResults from the EndoPhoto Study are published elsewhere [see forthcoming 15, 16, 17] and\nhighlight several key themes. These themes include the ways in which the pandemic exacerbated\nfeelings of isolation and created additional challenges in accessing healthcare for those living with\nendometriosis. Participants also built resilience during the pandemic by accepting social support\nfrom peers, advocating for themselves in healthcare interactions, and taking empowering actions to\nself-manage their conditions. The EndoPhoto Study was approved by the UBC C&W Research\nEthics Board (H22-02390).\nFindings from the Endophoto Study and our previous research highlighted the importance of\nsharing evidence that validates the experiences of people affected by endometriosis, helps people feel\nthey are not alone, fosters hope, and recognizes the strengths of those affected. As guided by our\nPatient Research Advisory Board (PRAB; a group of people with lived experience of endometriosis),\nwe chose to disseminate the study findings to a public audience through a social media campaign.\nThe goal of the campaign was to amplify the stories shared by Asian women regarding their\nexperiences during the COVID-19 pandemic, while focusing on disrupting silence related to medical\ndismissal, social isolation, and cultural stigma of pelvic pain and endometriosis. We recognized the\nrelevance of using a trauma-informed approach to develop and implement the campaign , however,\nwe found limited literature offering guidance on applying a trauma-informed lens in the context of a\nsocial media campaign. \nThe primary aim of this manuscript is to describe our development of a social media\ncampaign that was informed by the core principles of a trauma-informed approach, designed to share\nthe findings of a qualitative, arts-based endometriosis study. Our secondary aim is to share the\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nengagement results of the social media campaign. The target audience for this manuscript includes\nindividuals and teams interested in trauma-informed social media content creation, particularly those\ndisseminating health-adjacent research findings. \nOur Team\nWe are a multigenerational team with diverse genders, sexualities, ethnicities, and\nexperiences, and are committed to improving the understanding and awareness of endometriosis\nthrough cutting-edge interdisciplinary research and knowledge translation. We recognize the\nimportance of disseminating intentionally curated, evidence-based, and nuanced research findings to\nthe endometriosis community and the public. Our team includes researchers, clinicians, healthcare\ntrainees, and patient partners who are part of our PRAB. We are affiliated with the Endometriosis and\nPelvic Pain Laboratory at the University of British Columbia, Canada. \nWhat Are Trauma-Informed Approaches?\nThe formal conceptualization of trauma-informed care was first introduced by Harris and\nFallot [18], in the context of mental health and substance use treatment systems, however, these\nprinciples have roots in long-standing community-based practices, including those within Indigenous\ntraditions [19]. Since its inception, trauma-informed care has been adapted to various other\ndisciplines, with the Substance Abuse and Mental Health Services Administration’s (SAMHSA)\nframework often cited [20]. Trauma-informed approaches acknowledge that trauma is widespread ,\nwith some reports suggesting that up to 70% of the global population will experience some form of\ntraumatic event in their lifetime [21], and support actively creating systems that promote physical\nand psychological safety [20]. \nSAMHSA defines trauma broadly, encompassing experiences at individual and structural\nlevels that stemming from experiences that can be considered emotionally harmful [20]. SAMHSA’s\ntrauma-informed approach rests on four key assumptions: (1) realizing that trauma is widespread and\ncan deeply affect individuals, communities, and societies; (2) recognizing the signs of trauma; (3)\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nresponding to trauma by integrating trauma-informed approaches; and (4) resisting re-traumatization\n[20]. These assumptions are operationalized through six guiding principles: safety; trustworthiness\nand transparency; peer support; collaboration; empowerment, voice, and choice; and cultural,\nhistorical, and gender issues [20].\nIn healthcare settings, trauma-informed approaches in the provision of care have been shown\nto improve negative mental health symptoms and increase patient satisfaction, especially among\npopulations with histories of trauma or medical dismissal [22]. Trauma-informed approaches are\nparticularly relevant in sexual and reproductive health, where patients are frequently asked to\ndisclose sensitive information and are more likely to have experienced prior healthcare-related\ntrauma [23]. People with endometriosis have described feelings of shame and emotional distress\nrelated to their healthcare encounters where their symptoms have been diminished, normalized, or\ndismissed [24]. Interactions with healthcare systems, and providers—as well as with broader public\ndiscourses that minimize people’s experiences of endometriosis—have been further characterized as\nharmful, disempowering, and socially isolating. These experiences highlight the importance of\nutilizing a trauma-informed approach that prioritizes safety, empowerment, and collaboration [24].\nSocial Media, Knowledge Dissemination, and Trauma-Informed Approaches \n‘Social media’ is broadly defined as digital spaces “ built around the convergence of content\nsharing, public communication, and interpersonal connection” [25:1]. Social media has increasingly\nbecome a pervasive aspect of everyday life and a powerful knowledge dissemination tool where\nvarious social media platforms, such as Facebook and TikTok, have been used by the healthcare\ncommunity for patient education, peer support, and advocacy [26-28]. Social media platforms are\neasy to access and participatory, thus they allow individuals and organizations to disseminate\ninformation and rapidly engage large, globally-connected audiences [29]. Content shared on social\nmedia platforms can provide unique opportunities to build community, share experiences, and\ninfluence public health discourse [27]. Specific to endometriosis, social media has been used to\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nincrease advocacy, activism, and awareness of the condition [30]. Conversely, the nature of instant\naccess to information and a lack of fact-verifying measures can also lead to the unchecked and rapid\nspread of mis- and disinformation to the public. Moreover, algorithms may incidentally lead to re-\ntraumatization and feelings of stigmatization [31-33]. Furthermore, considering people often\nconsume social media content in isolation, there is little way for content creators to recognize\npotential (re)traumatization of viewers, highlighting the importance of creating and sharing content\nin an intentional way to prevent content-based (re)traumatization from the outset. \nAs knowledge dissemination of health-adjacent information increasingly moves onto social\nmedia platforms, trauma-informed approaches appear particularly relevant and potentially useful\nwhen working in these virtual environments. While there is limited guidance for applying trauma-\ninformed approaches in digital spaces [34], literature is emerging. We drew upon three frameworks\nthat highlighted the potential of these approaches to reduce harm when sharing health-adjacent\ninformation digitally. First, Josephs et al. [35] emphasized three key pillars for digital trauma-\ninformed design specific to sexual and reproductive health: privacy and confidentiality, intuitive and\nrepresentative designs, and inclusive language. Second, Trauma-informed computing, introduced by\nChen et al. [36], is a framework guiding the adaptation of trauma-informed principles to digital\ndesign. This framework recognizes that digital tools can cause or exacerbate trauma and seeks to\nenable safer technological experiences [36]. Key adaptations of trauma-informed principles for\nonline settings include safety, trustworthiness, peer support and collaboration, empowerment and\nchoice, and cultural sensitivity. Lastly, Scott et al. [32] built upon the framework from Chen et al.\n[36], adding specific aspects and examples to consider when applying trauma-informed approaches\nto social media engagement. The framework from Scott et al. [32] outlined six guiding principles: (1)\nsafety (e.g., safe data collection and storage, relaxing colors); (2) trustworthiness and transparency\n(e.g., transparent about what user data is collected and why); (3) peer support (e.g., protection for\nthose sharing their unique stories) ; (4) collaboration and mutuality (e.g., co-design with people with\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nlived experience); (5) empowerment, voice, and choice (e.g., no real names); (6) cultural and\nhistorical gender issues (e.g., acknowledge algorithmic biases). \nDeveloping our Trauma-Informed Social Media Campaign\nTheoretical Approaches \nThroughout the development of the campaign’s design, content creation, data interpretation,\nand dissemination strategies, we were primarily guided by principles of intersectional feminism and\nintegrated knowledge translation (IKT). An intersectional feminist perspective informed our\nunderstanding of how overlapping identities such as race, gender, and country of origin shape\nindividuals’ healthcare experiences. IKT is a collaborative process that emphasizes partnership\nbetween researchers and knowledge users throughout all stages of research [37]. IKT informed how\nwe identified priorities, designed methods, interpreted data, and shared results [37]. Unlike\ntraditional models that position researchers as the primary producers of knowledge, IKT recognizes\nthe expertise of both researchers and community partners, aiming to minimize power differentials\nand promote equitable, contextually relevant knowledge creation [38]. \nWith these guiding frameworks, the content that was shared during the social media\ncampaign was initially designed by H.D (quote posts), G.Y (image posts), and W.Z (videos/reels),\nwho drew upon findings from the EndoPhoto Study under the guidance of the content lead (H.N).\nBefore final approval, content, including images and associated captions, was reviewed and\ndiscussed with the broader research team during bi-weekly team meetings and bi-monthly PRAB\nmeetings. \nCampaign Goals\nOur main goal for the social media campaign was to share key research findings from the\nEndoPhoto Study, increase awareness of Asian women’s experiences living with endometriosis, and\ndirect viewers to our newly developed interactive EndoPhoto website [39]. The website showcases\nimages submitted by EndoPhoto Study participants alongside general endometriosis and pelvic pain\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nhealth information and resources co-created by researchers, clinicians, and patient partners. Our\nadaptation of the frameworks for a trauma-informed approach informed the formation of\npartnerships, development of content, and moderation of digital spaces throughout the campaign. In\nconducting the campaign, we aimed to foster a sense of validation, emotional safety, and support, for\nboth previous research participants and audiences, and minimize their risk of re-traumatization. The\ncampaign’s central message, your pain is real, you are believed, and you are not alone , matched the\noverall messaging of content produced by our team and shared on the website. Additionally, this\nmessage was consistently emphasized across all digital platforms. \nCampaign Launch \nWe launched the campaign in March 2025 to coincide with Endometriosis Awareness Month.\nThe Endometriosis and Pelvic Pain Laboratory had a previously established Instagram profile\n(@pelvicpainendo) with approximately 1000 followers before the campaign, and a Pinterest account\n(@pelvicpainendo), which was created for this and future campaigns. These platforms aligned with\nthe campaign’s visual and trauma-informed goals, offering features such as content warnings and\ncomment moderation. Content shared was similar for both platforms but adapted in format to best\nutilize each platform’s features. For example, Instagram’s reels, stories, and carousels supported a\nbalance of educational content and personal narratives, while Pinterest enabled thematic curation\nthrough boards and infographics. Pinterest also has a different set of users and is more aligned with\nartistic communities. Please note, we chose to share the images of content only from Instagram in\nthis manuscript due to easy viewability of the entire post from Instagram versus Pinterest. In total,\nthe campaign featured 41 posts between March 1st and March 31st across Instagram and Pinterest. All\nthe posts incorporated the widely recognised community hashtag #ThisIsEndo, supplemented by\ntopic-relevant hashtags. The team deliberately declined to create a new hashtag for the campaign,\ngiven the objective of using social media as a mechanism to reach a wide audience of users rather\nthan share isolated content with limited reach.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nConsidering Pinterest policies restrict the use of paid advertisements for new accounts, a soft\nlaunch on the platform began on February 19th, 2025. Because of this, we published several posts\nprior to the full campaign, which allowed us to generate early interest, establish baseline\nengagement, and be considered an established account. \nEarly Challenges\nEarly in the campaign (March 3, 2025), our Instagram account was flagged by the Meta\nalgorithm into a category called ‘Health and Wellness.’ This category was designed by Meta to\nreduce ‘negative’ advertising and monetization of organizations that were using advertising to sell\nproducts and services. Although we were not advertising products, our placement in this category\nlimited what content could be promoted. Posts that included any features flagged as ‘negative’ by the\nalgorithm were prohibited from being advertised. Considering that endometriosis experiences often\ninvolve challenges, our pre-planned content required significant changes in order to meet the\nalgorithm’s criteria. Figure 1 shows the original post that was flagged. \nFigure 1. Original post on Instagram that was flagged by the algorithm as being ‘negative’.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nIncorporating Trauma-Informed Principles\nBased on the previously mentioned frameworks, we adapted our campaign to focus on the\nfollowing principles of a trauma-informed approach: (1) support and collaboration; (2)\ntrustworthiness and transparency; (3) safety; (4) empowerment and voice; and (5) cultural and\ngender sensitivity. In the following section, we discuss how we enacted these aspects. Please note,\nalthough these aspects are presented as being separate ideas, many have overlapping and related\nactions. Table 1 summarizes the approaches we took when developing this campaign. \nTable 1. Our Approach to trauma-informed principles \nTrauma informed\nguiding principle\nOur approach Considerations\nCollaboration and\nmutuality \n Co-designed with PRAB members and\ndiverse interdisciplinary team of experts \n Incorporated feedback throughout process\n Shared content from lived experiences\n Engaged with known influencers to\npromote content \n More time may be needed to include all team\nmembers’ feedback and ideas, and thus\nlonger timeline to project completion\nTrustworthiness and\ntransparency\n Shared our research team positionality\nstatement\n Created transparency around funding and\nwhat this meant \n Informed participants of purpose/content\nwhen consenting to original study\n Obtained explicit and ongoing consent\nrelated to use of data \n Viewers may have personal negative feelings\nabout funders\n Additional human resources needed to gather\nconfirmatory consent from participants \n Opt-out versus opt-in could incidentally\ninclude photos that participants did not want\nto share, but did not see the email\nSafety Used gentle colors in content creation\n Moderated comments \n Included content warnings \n Grouped images and shared select images\n Engaged with specific platforms (Instagram\nand Pinterest)\n De-identified images\n Participants may provide images that violate\ndesign principles and gentle colors\n Additional human resources required for\nmoderating comments\n Not including all experiences captured as\nmany images were not selected\n Not as wide reach due to including only\nselect friendly platforms\n Temporary stories reduce reach\n De-identifying images or using the photos\nwithout the original captions may alter the\nintended goal and impact of the image,\nlimiting participant creativity\nEmpowerment & voice Used friendly, non-stigmatizing, and\neveryday language when captioning photos\n Leveraged platforms to amplify voices\n Potential for less reach when only using\nselect platforms and also reach to certain\ngroups (e.g., older people who more often\nuse Facebook) might be reduced;\ndemographics can vary across platforms\n Participant caption not always included with\nphotograph, which could change intended\nmeaning\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\n Focus on ‘positive’ aspects due to algorithm\ncould represent a one-sided or skewed\nrepresentation of experiences\n Sharing content that is ‘trauma-informed’\nmay incidentally portray the information and\nexperiences as being neutral or positive\nCultural and Gender\nSensitivity \n Ensured sharing only ‘positive’ language\nand experiences due to the Meta algorithm \n Avoided stereotypes and stigmatization\n Avoided hyper-gendered content \n Excluding images that depicted too much\npain or had identifying information may\nreduce the transparency of people’s\nexperiences\n Some people might feel the non-hyper-\ngendered colors and content do not relate to\nthem as much\n1. Support and Collaboration \nWe defined support and collaboration as intentional actions taken to meaningfully engage\nwith those with lived experience and others in the community doing similar work. As such, PRAB\nmembers defined campaign goals, reviewed and co-developed content, and ensured that materials\nwere safe, empowering, and contextually relevant. The PRAB involvement created an opportunity\nfor safety by foregrounding lived experience and ensuring that social media content reflected their\nvalues and perspectives. The campaign was also managed by an external communications agency,\nwhere the partner and social media specialist (S.L) was someone with lived experience of\nendometriosis who simultaneously acted as a member of the PRAB. \nWe also took a collaborative approach to promoting the campaign, leveraging our known and\nexisting networks. This involved approaching familiar social media accounts, including science\ncommunicators, non-profit organisations, news outlets, and independent influencers, and asking them\nto share and promote our content. The campaign also partnered with advocacy organizations,\nincluding The Endometriosis Network Canada, to broaden outreach and ensure alignment with\nexisting efforts in the endometriosis advocacy landscape.\n2. Trustworthiness and Transparency\nWe considered trustworthiness and transparency aspects that involved disclosing who is\nbehind the campaign, our goals, funders and where the content came from, as well as being\ntransparent with the participants of the EndoPhoto Study about how we were using their data. (Figure\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\n2) \nFigure 2. Instagram post explaining our research funders.\nAll participants in the EndoPhoto Study provided explicit informed consent to have their\nphotographs used in a social media campaign. We also provided participants with a lay summary of\nthe results via email that included an ‘action required’ message, showing participants the website\n[39] where photographs had been included in a virtual gallery, and gave participants the ability to\nwithdraw their photographs and quotes at any point. We also strongly encouraged EndoPhoto Study\nparticipants to review their photos to ensure they were comfortable with these being shared. No\nparticipants opted out of their photos being shared. \n3. Safety\nWhen considering safety, we centered the principles of privacy and confidentiality from\nJosephs et al. [35], and prioritized safety and preventing re-traumatization of participants of the\nEndoPhoto Study whose images we shared. First, to maintain the emotional safety of those who\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nparticipated in the research and shared their photos, we intentionally curated visual content in a way\nthat still honored participants’ lived experiences. We did this by choosing images that were not\nintimately personal, or overtly medical in nature, or depicted individual people in moments of visible\ndistress. Instead, the campaign showcased strength-based visuals such as nature scenes, symbolic\nobjects, and comforting moments, like participants’ pets offering support (see Figures 3 and 4).\nWhen possible, images were paired with participant-authored captions that emphasized resilience,\nhealing, and other personally meaningful themes to balance narrative authenticity with emotional\nsafety. We also intentionally blurred faces to protect identities, or selected images that further\nsupported anonymity, such as the use of a surgical mask (as seen in Figures 4 and 5).\n Figure 3. Collage of nature and social support. \nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 4. Pets providing comfort.\nSecond, careful consideration was given to how participant photographs were shared. We\nopted to present images as collages or grouped images rather than posting them individually\n(example includes Figure 6). This approach was chosen to minimize the risk of certain photos\nreceiving disproportionately more ‘likes’ or ‘shares’ than others, which could cause distress among\nsome participants who noticed their photos were less ‘liked’. \nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 5. Examples of identity protection on Instagram.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 6. Shared collage of participant photos from an Instagram reel.\nThird, based on recommendations from our social media specialist and patient partners,\nInstagram and Pinterest were specifically chosen as platforms for this campaign, given they are well-\nsuited to image-based storytelling and, anecdotally, were considered less volatile during the dates of\nthe campaign, with lower rates of reproductive-health-online-harassment compared with other well-\nknown platforms. Fourth, elements of safety were further considered through active moderation of\ncomments to identify and remove hate speech, trolling, and unsolicited medical advice; however, we\ndid not find these were an issue in this campaign. \n4. Empowerment and Voice\nWe considered empowerment and voice to focus on ensuring we were truthfully representing\nparticipant experiences of the EndoPhoto Study , opting to share content that was more strengths-\nbased and showcased resilience and empowerment, while also sharing the reality of experiencing\nendometriosis (Figure 7 and 8). In order to accomplish this, we used non-stigmatizing, everyday\nlanguage, and often incorporated participants’ own words in explaining the context of the photos\n(Figure 9). \nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 7. Quote-based content on strength while living with endometriosis.\nFigure 8. Quote based content on living with endometriosis.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 9. Everyday language in caption.\nBy integrating visual narratives with participant-authored captions, the campaign created\nopportunities for individuals to reclaim agency in narrating their healthcare experiences, particularly\nwhere medical and workplace systems had previously been invalidating. For example, o ne post\nfocused on how cultural taboos surrounding menstruation can lead to a lack of communication and\ndiscussion of pain. This caption drew attention to the compounding effects of stress, isolation, and\nreduced access to care (Figure 10). Together, we intended these posts to help humanize the lived\nrealities of people with endometriosis, while fostering empathy, reducing stigma, and encouraging\npublic dialogue.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 10. Content highlighting cultural taboos around menstruation. \n5. Cultural and Gender Sensitivity\n Striving for cultural and gender sensitivity, we carefully curated content to avoid\nsensationalism, incidental stigmatization, stereotypes, clinical or diagnostic language, and potentially\ndistressing imagery. The campaign content aimed to disrupt the silence surrounding pelvic pain and\nendometriosis, particularly the effects of medical dismissal, social isolation, and cultural stigma.\nConsidering the gendered nature of endometriosis—and although all the participants whose\nphotographs we shared identified as cisgender women—we intentionally avoided making the content\nhyper-feminized or gendered towards women exclusively. We also aimed to avoid perpetuating\nstereotypes and hyper-feminized content by choosing a colour palette that was both intentionally\ncalming, while not overly gendered (Figure 11). \nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 11. Avoidance of hyper-gendered or stigmatizing language or colours \nIncreasing Reach Through Advertisements\nTo increase the reach of the social media campaign, that is, the number of people who have\nseen online content at least once, we paid for advertisements on both platforms with a total budget of\n$3,000 CAD. For our paid advertisements, a detailed audience profile was developed to guide\ncontent creation and ad targeting. The intended audience included individuals who either had a\nconfirmed or suspected endometriosis diagnosis, were assigned female at birth, of reproductive age\n(inclusive of all gender identities, sexual orientations, and relationship statuses), with moderate\nlevels of health literacy, and understood English. High-frequency search terms related to pelvic pain\nand endometriosis were identified to optimize advertisement discoverability (for example, pain,\nsymptoms, selfcare, journey, resilience, reflection). \nMeasuring Campaign Engagement\nWe used platform-integrated analytics (Instagram Insights and Pinterest Analytics) to monitor\nprimary performance indicators. For consolidated definitions of terms used to measure engagement\nsee Table 2. Metrics included reach, engagement ( likes, shares, comments, profile visits, and link\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nclicks), and website page visits. We reviewed these metrics throughout the campaign to enable real-\ntime optimization of posting frequency and timing, as well as advertising spend based on platform\nrecommendations and observed audience behaviour. Over the 31-day campaign, the website attracted\n6,326 unique users. Instagram generated both the greatest volume of sessions and the longest dwell\ntime. Pinterest's shorter dwell times likely reflected the account’s infancy (new profile, first\ncampaign, algorithmic learning period). The high number of impressions was largely attributed to\nthree posts that ‘went viral’ during the campaign, meaning they received over 1 million views each\n(Figure 12, 13, and 14). These posts reflected messages of support, resiliency, and healing. Ads drew\nin the largest number of platform users to the page, accounting for most of the sessions and\nengagement, with arguably the least human resources (for engagement measures, see Table 3). \nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 12. Still image from a reel that ‘went viral’ during the campaign.\nFigure 13. Post that ‘went viral’ during the campaign. \nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigure 14. Still image taken from the second reel that ‘went viral’ during the campaign. \nTable 2. Consolidated Definitions of Terms used to Describe Campaign Engagement\nTerm Definition\nReach Reach is defined as the number of unique users who have seen\nonline content at least once\nEngagement Likes, shares, comments, profile visits, and link clicks\nImpressions The total number of times the content was presented to potential\nusers on screen\nV olume of sessions Number of visits to the website\nDwell Time How long people view the content for\nClick through rates Percentage of people who click on a link to the website within your\ncontent \nTable 3. Engagement Results from Instagram and Pinterest \nPlatform Metric Value\nOverall Total Social Impressions 8,540,528\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nInstagram Engagement* 6.23%\nAd Impressions 7,941,457\nAds Reach 3,550,309\nPinterest Total Impressions 581,081\nTotal Engagement 5,528\n*Please note, o n Instagram for ‘engagement’ anything above 6% is considered high engagement and on Pinterest\nanything between 1% - 2% is considered average engagement [40, 41].\nDiscussion and Lessons Learned \nThis manuscript describes the development of a trauma-informed social media campaign\ndesigned to disseminate findings from the EndoPhoto Study , which explored the experiences of\nSouth, East, and Southeast Asian women living with endometriosis in Canada during the COVID-19\npandemic. We intend for this work to serve as a guide for others seeking to share their research\nfindings through social media, with broader applicability for those interested in trauma-informed\ncontent creation. By integrating trauma-informed principles, the campaign not only centered the\nvoices of underrepresented communities but also demonstrated the potential for digital platforms to\npromote trauma-informed knowledge dissemination. \nUpon reviewing our engagement metrics, we found that quote-based content (opposed to\nimage-based content) produced the highest click-through rates on both platforms; announcement\nposts (e.g., study overview) generated the greatest engagement; and Instagram ads, particularly quote\ngraphics, outperformed other creative formats. Although it is challenging to measure how the content\ntruly impacted viewers, some of these indicators may provide insight into the meaning viewers\ngarnered from the content. For example, the option to ‘save’ content on Pinterest may suggest that\nsome of the posts resonated enough for viewers to want to share or review the content at a later date,\nperhaps indicating a feeling of added value. \nWhile trauma-informed principles are increasingly recognized in clinical and community\nsettings, their application to digital media, particularly social media, remains largely underexplored.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nThis tutorial highlights how principles such as collaboration, safety, trustworthiness, voice, and\ncultural and gender sensitivity can be applied in online spaces to mitigate harm and increase\nengagement. Additionally, this project helps to address the critical gap in the representation of\nracialized individuals, particularly Asian women, in endometriosis advocacy and online discourse.\nOne unanticipated lesson learned was the suppression of women’s sexual and reproductive\nhealth information on Meta platforms. A recent report published by Center for Intimacy Justice [42]\nhighlighted that a bias exists on major Meta platforms, where organizations experienced their content\nand advertisements related to women’s sexual and reproductive health, including fertility and pelvic\nhealth, being censored and over-moderated. Social media algorithms, driven by artificial intelligence,\nlimited content visibility when posts included ‘sensitive’ health-related terms or were deemed to\nviolate vague platform policies such as Meta’s ‘Personal Health and Appearance’ guidelines. This\nreport aligned with our experience, as our content was flagged as not aligning with community\nstandards due to its ‘negative’ nature and association with healthcare. This flag necessitated a shift\ntoward resilience-focused and positively framed messaging only, which may have constrained the\nfull scope of participant narratives. \nStrengths of the Campaign \nOne of the campaign's primary strengths was its collaborative, interdisciplinary approach.\nThe involvement of patient partners through the PRAB ensured content authenticity and emotional\nsafety. As well, working with a social media specialist was invaluable in navigating the landscape of\ndigital media. The campaign also benefited from sufficient funding, allowing strategic investment in\nhigh-performing ad formats and continuous optimization based on analytics. Considering the\nexpertise of the team, content development led by those with lived, clinical, and research experience\nadded legitimacy, credibility, and multiple perspectives that countered misinformation in digital\nhealth spaces. Importantly, the campaign filled a representational void by centering the narratives of\nSouth, East, and Southeast Asian individuals with endometriosis, a demographic historically\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nunderrepresented in both research and advocacy.\nLimitations of the Campaign\nConsidering platform selection was intentional, using only Instagram and Pinterest (chosen\nfor their visual nature and perceived safety) may have excluded audiences who primarily engage\nwith platforms like TikTok, X (formerly Twitter), or Facebook. Additionally, the metrics used to\ngauge success, such as views, impressions, and likes, offer limited insight into true impact. While\nsome posts featuring animals gained viral traction, it is unclear whether the viral nature was due to\ntheir relevance to endometriosis or due to the important role that animals can play in people’s lives,\nprompting questions about whether high engagement with content truly reflected increased\nawareness or understanding of endometriosis, specifically. \nKey Takeaways\n Trauma-informed principles can be adapted for digital health communication and effectively\napplied in social media campaigns.\n Posts that featured quotes, support networks (including pets), and announcements\nconsistently maximized engagement, suggesting these formats may be prioritized to ensure\nengagement. \n Early budget reallocation toward viral creative assets improved cost-efficiency. \n Paid advertisements created opportunities for ensuring wider reach and may be helpful in\nproviding opportunities for content to be viewed by a larger audience.\n Inclusive online storytelling that prioritizes participant voice and emotional safety resonates\nwith audiences and supports effective knowledge translation.\n Algorithmic biases targeted toward women’s sexual and reproductive health may necessitate\ncreativity to avoid being flagged or framing messaging in ‘positive’ ways. This can ensure\nwider reach but highlights gender bias within social media platforms.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nAcknowledgments: We would like to thank the participants of the EndoPhoto Study who shared\ntheir stories and experiences with us. Also, we are grateful to have worked with Mass Velocity Media\nto develop this social media campaign. \nFunding: This work was funded by a 2024 Michael Smith Health Research BC Reach Award [RA-\n2024-04266]\nAuthors contributions (CRediT): \nKM: Funding acquisition, Methodology, Visualization, Supervising, Writing-Original draft, Writing-\nReview and editing.\nHD: Methodology, Visualization, Writing-Original draft, Writing-Review and editing.\nAFH: Conceptualization, Funding acquisition, Methodology, Supervision, Writing-Review and\nediting.\nHN: Conceptualization, Data curation, Methodology, Investigation, Resources, Funding acquisition,\nProject administration, Supervision, Visualization, Writing-Review and editing.\nGY: Methodology, Visualization, Writing-Original draft, Writing-Review and editing.\nWZ: Methodology, Visualization, Writing-Original draft, Writing-Review and editing.\nJS: Funding acquisition, Methodology, Writing-Review and editing.\nSL: Formal analysis, Investigation, Methodology, Writing-Review and editing.\nAL: Funding acquisition, Methodology, Visualization, Writing-Review and editing.\nPJY: Funding acquisition, Methodology, Writing-Review and editing.\nNLO: Conceptualization, Methodology, Visualization, Writing-Original draft, Writing-Review and\nediting, Project administration, Supervision, Funding acquisition. \nConflicts of interest: No major conflicts of interest; however, SL acted as a patient partner and a\npaid consultant from Mass Velocity Media who contributed to the development and strategies of the\nsocial media campaign. \nData availability: Data sharing is not applicable to this article as no data sets were generated or\nanalyzed during this study.\n \nAbbreviations: \nIKT: Integrated Knowledge Translation\nPRAB: Patient Research Advisory Board\nSAMHSA: Substance Abuse and Mental Health Services Administration’s framework\nReferences\n1. Zondervan KT, Becker CM, Missmer SA. Endometriosis. NEJM. 2020;382(13):1244-56.\n2. Johnson NP, Hummelshoj L, Adamson GD, Keckstein J, Taylor HS, Abrao MS, et al. World\nEndometriosis Society consensus on the classification of endometriosis. Human Reproduction.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\n2017;32(2):315-24.\n3. Wahl KJ, Yong PJ, Bridge-Cook P, Allaire C, EndoAct C. Endometriosis in Canada: It is time\nfor collaboration to advance patient-oriented, evidence-based policy, care, and research. JOGC.\n2021;43(1):88-90.\n4. Singh S, Soliman AM, Rahal Y , Robert C, Defoy I, Nisbet P, et al. Prevalence, Symptomatic\nBurden, and Diagnosis of Endometriosis in Canada: Cross-Sectional Survey of 30 000 Women.\nJournal of obstetrics and gynaecology Canada. 2020;42(7):829-38.\n5. Greene R, Stratton P, Cleary SD, Ballweg ML, Sinaii N. Diagnostic experience among 4,334\nwomen reporting surgically diagnosed endometriosis. Fertil Steril. 2009;91(1):32-9.\n6. Sims OT, Gupta J, Missmer SA, Aninye IO. Stigma and Endometriosis: A Brief Overview\nand Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay. Int J Environ Res\nPublic Health. 2021;18(15).\n7. Bougie O, Nwosu I, Warshafsky C. Revisiting the impact of race/ethnicity in endometriosis.\nRepro Fertil. 2022;3(2):R34-r41.\n8. Williams C, Long AJ, Noga H, Allaire C, Bedaiwy MA, Lisonkova S, et al. East and South\nEast Asian ethnicity and moderate-to-severe endometriosis. J Minim Invasive Gynecol.\n2019;26(3):507-15.\n9. Kabani Z, Ramos-Nino ME, Ramdass PV AK. Endometriosis and COVID-19: A systematic\nreview and meta-analysis. Int J Mol Sci. 2022;23(21):12951.\n10. Demetriou L, Cox E, Lunde CE, Becker CM, Invitti AL, Martínez-Burgo B, et al. The Global\nImpact of COVID-19 on the Care of People With Endometriosis. Frontiers in Global Women's\nHealth. 2021;2:662732.\n11. Leonardi M, Horne AW, Vincent K, Sinclair J, Sherman KA, Ciccia D, et al. Self-\nmanagement strategies to consider to combat endometriosis symptoms during the COVID-19\npandemic. Hum Reprod Open. 2020;2020(2):hoaa028.\n12. Schwab R, Stewen K, Kottmann T, Anic K, Schmidt MW, Elger T, et al. Mental Health and\nSocial Support Are Key Predictors of Resilience in German Women with Endometriosis during the\nCOVID-19 Pandemic. Journal of clinical medicine. 2022;11(13):3684.\n13. Leigh JP, Moss SJ, Tiifu F, FitzGerald E, Brundin-Mathers R, Dodds A, et al. Lived\nexperiences of Asian Canadians encountering discrimination during the COVID-19 pandemic: a\nqualitative interview study. CMAJ open. 2022;10(2):E539-E45.\n14. Han CS, Oliffe JL. Photovoice in mental illness research: A review and recommendations.\nHealth. 2016;20(2):110-26.\n15. Marshall K, Howard AF, Marshall N, Noga H, Rojas HE, Leonova A, et al. Impacts of the\nCOVID-19 pandemic on the mental health of Asian women with endometriosis in Canada: A\nphotovoice study. In review: SAGE Women’s Health n.d.\n16. Marshall N, Howard AF, Marshall K, Rojas HE, Orr NL, Noga H, et al. Endometriosis and\nexpressions of self-management and resilience among Asian women living in Canada during the\nCOVID-19 pandemic: A photovoice study. In review: SAGE Journal of Public Health Research. n.d.\n17. Leonova A, Howard AF, Marshall K, Noga H, Orr NL, Marshall N, et al. Endometriosis-\nRelated Healthcare Experiences of Asian Women During the COVID-19 Pandemic: A Photovoice\nStudy. pending submission. n.d.\n18. Harris M, Fallot RD. Envisioning a trauma-informed service system: a vital paradigm shift.\nNew Dir Ment Health Serv. 2001(89):3-22.\n19. Makosis P, Greenwood M, editors. What’s new is really old: Trauma-informed health\npractices through an understanding of historic trauma National Collaborating Centre for Indigenous\nHealth; 2017.\n20. Substance Abuse and Mental Health Services Administration [SAMHSA]. SAMHSA’s\nconcept of trauma and guidance for a trauma-informed approach 2014.\n21. World Health Organization. Post-traumatic stress disorder 2024 [Available from:\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nhttps://www.who.int/news-room/fact-sheets/detail/post-traumatic-stress-disorder.\n22. Raja S, Hasnain M, Hoersch M, Gove-Yin S, Rajagopalan C. Trauma Informed Care in\nMedicine: Current Knowledge and Future Research Directions. Family & Community Health.\n2015;38(3):216-26.\n23. American College of Obstetricians and Gynecologists. Caring for patients who have\nexperienced trauma. 2021.\n24. Parmar G, Howard AF, Noga H, Tannock L, Abdulai A-F, Allaire C, et al. Pelvic pain &\nendometriosis: the development of a patient-centred e-health resource for those affected by\nendometriosis-associated dyspareunia. BMC medical informatics and decision making.\n2025;25(1):79-12.\n25. Burgess J, Marwick A, Poell T. Editors introduction The SAGE handbook of Social media:\nSAGE Publications; 2018. p. 1-10.\n26. Davis J. Social Media. The International Encyclopedia of Political Communication2016.\n27. Moorhead SA, Hazlett DE, Harrison L, Carroll JK, Irwin A, Hoving C. A new dimension of\nhealth care: systematic review of the uses, benefits, and limitations of social media for health\ncommunication. J Med Internet Res. 2013;15(4):e85.\n28. Ezeilo CO, Leon N, Jajodia A, Han H-R. Use of Social Media for Health Advocacy for\nDigital Communities: Descriptive Study. JMIR Form Res. 2023;7:e51752.\n29. Shawky S, Kubacki K, Dietrich T, Weaven S. Using social media to create engagement: a\nsocial marketing review. Journal of social marketing. 2019;9(2):204-24.\n30. Seo H, Burkett KM, Okocha M, Ha H, Chaif R, Izhar N, et al. Social media activism and\nwomen's health: Endometriosis awareness and support. Digit Health. 2025;11:20552076251314905.\n31. Aïmeur E, Amri S, Brassard G. Fake news, disinformation and misinformation in social\nmedia: a review. Soc Netw Anal Min. 2023;13(1):30.\n32. Scott CF, Marcu G, Anderson RE, Newman MW, Schoenebeck S. Trauma-Informed Social\nMedia: Towards Solutions for Reducing and Healing Online Harm. Proceedings of the 2023 CHI\nConference on Human Factors in Computing Systems; Hamburg, Germany: Association for\nComputing Machinery; 2023. p. Article 341.\n33. Abdulai A-F, Howard AF, Yong PJ, Currie LM. Defining destigmatizing design guidelines for\nuse in sexual health-related digital technologies: A Delphi study. PLOS Digital Health.\n2023;2(7):e0000223.\n34. Zheng W, Walquist E, Datey I, Zhou X, Berishaj K, Mcdonald M, et al. “It’s Not What We\nWere Trying to Get At, but I Think Maybe It Should Be”: Learning How to Do Trauma-Informed\nDesign with a Data Donation Platform for Online Dating Sexual Violence. Proceedings of the 2024\nCHI Conference on Human Factors in Computing Systems; Honolulu, HI, USA: Association for\nComputing Machinery; 2024. p. Article 743.\n35. Josephs JC, Bungay V , Guta A, Gilbert M, Abdulai AF. Trauma-Informed Technology Design\nin Digital Sexual Health Interventions. Stud Health Technol Inform. 2024;315:773-4.\n36. Chen JX, McDonald A, Zou Y , Tseng E, Roundy KA, Tamersoy A, et al. Trauma-Informed\nComputing: Towards Safer Technology Experiences for All. 2022(Conference Proceedings):1-20.\n37. Kothari A, Wathen CN. A critical second look at integrated knowledge translation. Health\nPolicy. 2013;109(2):187-91.\n38. Crosschild C, Huynh N, De Sousa I, Bawafaa E, Brown H. Where is critical analysis of\npower and positionality in knowledge translation? Health Research Policy and Systems.\n2021;19(1):92-.\n39. Endometriosis and Pelvic Pain Laboratory. EndoPhoto 2025 [Available from:\nhttps://pelvicpainendo.ca/photovoice-endophoto/.\n40. Hudson C. What’s a good engagement rate on Pinterest? 2024.\n41. Polishchuk D. What is a good instagram engagement rate 2022 [Available from:\nhttps://promorepublic.com/en/blog/what-is-a-good-instagram-engagement-rate/.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\n42. Center for Intimacy Justice. The digital gag: Supression of sexual and reproductive health on\nMeta, Tiktok, Amazon and Google. 2025.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nSupplementary Files\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nFigures\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nOriginal post on Instagram that was flagged by the algorithm as being ‘negative’.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nInstagram post explaining our research funders.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nCollage of nature and social support.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nPets providing comfort.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nExamples of identity protection on Instagram.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nShared collage of participant photos from an Instagram reel.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nQuote-based content on strength while living with endometriosis.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nQuote based content on living with endometriosis.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nEveryday language use in caption.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nContent highlighting cultural taboos around menstruation.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nAvoidance of hyper-gendered or stigmatizing language or colours.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nStill image from a reel that ‘went viral’ during the campaign.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nPost that ‘went viral’ during the campaign.\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]\n\n\nJMIR Preprints Marshall et al\nStill image taken from the second reel that ‘went viral’ during the campaign.\nPowered by TCPDF (www.tcpdf.org)\nhttps://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]","source_license":"CC0","license_restricted":false}