Abstract
Trauma-informed approaches promote the creation of systems that prioritize safety and empowerment to improve patient well-
being. These approaches are especially important in sexual and reproductive healthcare, where patients are often asked to
disclose sensitive and personal information. This disclosure is particularly relevant in the context of endometriosis, a condition
that affects 10% of reproductive-aged women and causes debilitating pelvic pain. Our team led a trauma-informed social media
campaign to raise awareness and improve understanding of endometriosis by sharing research findings from a photovoice study
focusing on Asian women’s experiences of endometriosis during the COVID-19 pandemic in Canada (EndoPhoto Study). In this
manuscript, we describe how we adapted and applied trauma-informed approaches to the development and implementation of the
social media campaign by following five principles: support and collaboration; trustworthiness and transparency; safety;
empowerment and voice; and cultural and gender sensitivity. We co-designed this campaign with patient partners with lived
experience of endometriosis to facilitate collaboration and mutuality. Additionally, we shared details about the funders of this
study to increase trust and transparency, moderated comments and de-identified images to promote participant safety, chose safer
platforms to enhance empowerment and voice, and avoided stereotypes and shared authentic experiences of Asian people with
endometriosis to support cultural and gender sensitivity. The campaign launched on Instagram and Pinterest in March 2025 to
coincide with Endometriosis Awareness Month. The social media campaign received 8,540,528 total impressions over the course
of the month and had a 6.23% and 1.4% engagement rates on Instagram and Pinterest, respectively.
(JMIR Preprints 04/09/2025:83491)
DOI: https://doi.org/10.2196/preprints.83491
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JMIR Preprints Marshall et al
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JMIR Preprints Marshall et al
Original Manuscript
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Title: Developing a trauma-informed social media campaign to disseminate endometriosis specific
qualitative arts-based research findings: A tutorial
Marshall, Kerry*, MN, PhD Candidate, (1, 2) 0000-0002-1327-0363
Dhillon, Hargun* (3), 0009-0009-9673-8520
Howard, A. Fuchsia, PhD, (1, 2), 0000-0001-5704-1733
Noga, Heather, MA, 0000-0002-3565-6072 (2)
Yang, Grace J, BSc, (3) 0000-0002-8219-523X
Zhu, William, BSc, (3) 0009-0005-4504-4706
Sutherland, Jessica, BA, 0000-0002-8229-2785, (4)
Lett, Sarah, 0009-0008-2944-8470, (4)
Leonova, Anna, MSc, PhD Candidate, 0000-0002-7479-3352 (3)
Yong, Paul J, MD, PhD, 0000-0001-5521-3052 (2, 3)
Orr, Natasha L, PhD, 0000-0002-7413-9369 (1, 2, 3)
*co-first authors
Affiliations:
1. School of Nursing, University of British Columbia, Vancouver, Canada
2. Women’s Health Research Institute, BC Women’s Hospital + Health Centre, Vancouver,
Canada
3. Department of Obstetrics and Gynecology, Faculty of Medicine, University of British
Columbia, Vancouver, Canada
4. Patient Research Advisory Board, University of British Columbia Endometriosis and Pelvic
Pain Lab, Vancouver, Canada
Corresponding author: A. Fuchsia Howard,
[email protected], 604-822-4372, UBC School
of Nursing, T201-2211 Wesbrook Mall, Vancouver BC, V6T2B5.
Keywords
trauma-informed approach; social media; knowledge translation; endometriosis;
information dissemination; content creation
Abstract
Trauma-informed approaches promote the creation of systems that prioritize safety and
empowerment to improve patient well-being. These approaches are especially important in sexual
and reproductive healthcare, where patients are often asked to disclose sensitive and personal
information. This disclosure is particularly relevant in the context of endometriosis, a condition that
affects 10% of reproductive-aged women and causes debilitating pelvic pain. Our team led a trauma-
informed social media campaign to raise awareness and improve understanding of endometriosis by
sharing research findings from a photovoice study focusing on Asian women’s experiences of
endometriosis during the COVID-19 pandemic in Canada (EndoPhoto Study). In this manuscript, we
describe how we adapted and applied trauma-informed approaches to the development and
implementation of the social media campaign by following five principles: support and
collaboration; trustworthiness and transparency; safety; empowerment and voice; and cultural and
gender sensitivity. We co-designed this campaign with patient partners with lived experience of
endometriosis to facilitate collaboration and mutuality. Additionally, we shared details about the
funders of this study to increase trust and transparency, moderated comments and de-identified
images to promote participant safety, chose safer platforms to enhance empowerment and voice, and
avoided stereotypes and shared authentic experiences of Asian people with endometriosis to support
cultural and gender sensitivity. The campaign launched on Instagram and Pinterest in March 2025 to
coincide with Endometriosis Awareness Month. The social media campaign received 8,540,528 total
https://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]
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impressions over the course of the month and had a 6.23% and 1.4% engagement rates on Instagram
and Pinterest, respectively.
https://preprints.jmir.org/preprint/83491 [unpublished, non-peer-reviewed preprint]
JMIR Preprints Marshall et al
Background/Rationale
Endometriosis is a chronic inflammatory condition characterized by the presence of
endometrial-like tissue outside the uterus [1]. Symptoms may vary, though 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 five 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 and ultimately affect the mental and physical health of those with
endometriosis [3, 5, 6] . Furthermore, racialized populations may experience additional barriers to
endometriosis diagnosis and care [7]. For instance, one study found that East and/or Southeast Asian
people were eight 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 healthcare system, causing resource redirection towards 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 cancelled as
hospitals became overwhelmed and healthcare 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
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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 employed photovoice, an arts-based methodology that provides opportunities to use
photographs to share experiences and emotions related to stigmatized or hidden conditions [14].
Results
from the EndoPhoto Study are published elsewhere [see forthcoming 15, 16, 17] and
highlight several key themes. These themes include the ways in which the pandemic exacerbated
feelings of isolation and created additional challenges in accessing healthcare for those living with
endometriosis. Participants also built resilience during the pandemic by accepting social support
from peers, advocating for themselves in healthcare interactions, and taking empowering actions to
self-manage their conditions. The EndoPhoto Study was approved by the UBC C&W Research
Ethics Board (H22-02390).
Findings from the Endophoto Study and our previous research highlighted 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. As guided by our
Patient Research Advisory Board (PRAB; a group of people with lived experience of endometriosis),
we chose to disseminate the study findings 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 medical
dismissal, social isolation, and cultural stigma of pelvic pain and endometriosis. We recognized the
relevance of using a trauma-informed approach to develop and implement the campaign , however,
we found limited literature offering guidance on applying a trauma-informed lens in the context of a
social media campaign.
The primary aim of this manuscript is to describe our development of a social media
campaign that was informed by the core principles of a trauma-informed approach, designed to share
the findings of a qualitative, arts-based endometriosis study. Our secondary aim is to share the
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engagement results of the social media campaign. The target audience for this manuscript includes
individuals and teams interested in trauma-informed social media content creation, particularly those
disseminating health-adjacent research findings.
Our Team
We are a multigenerational team with diverse genders, sexualities, ethnicities, and
experiences, 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, healthcare
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.
What Are Trauma-Informed Approaches?
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 roots in long-standing community-based practices, including those within Indigenous
traditions [19]. Since its inception, trauma-informed care has been adapted to various other
disciplines, with the Substance Abuse and Mental Health Services Administration’s (SAMHSA)
framework often cited [20]. Trauma-informed approaches acknowledge that trauma is widespread ,
with some reports suggesting that up to 70% of the global population will experience some form of
traumatic event in their lifetime [21], and support actively creating systems that promote physical
and psychological safety [20].
SAMHSA defines trauma broadly, encompassing experiences at individual and structural
levels that stemming from experiences 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)
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responding to trauma by integrating trauma-informed approaches; and (4) resisting re-traumatization
[20]. These assumptions are operationalized through six guiding principles: safety; trustworthiness
and transparency; peer support; collaboration; empowerment, voice, and choice; and cultural,
historical, and gender issues [20].
In healthcare 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 [22]. 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 healthcare-related
trauma [23]. People with endometriosis have described feelings of shame and emotional distress
related to their healthcare encounters where their symptoms have been diminished, normalized, or
dismissed [24]. Interactions with healthcare 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
utilizing a trauma-informed approach that prioritizes safety, empowerment, and collaboration [24].
Social Media, Knowledge Dissemination, and Trauma-Informed Approaches
‘Social media’ is broadly defined as digital spaces “ built around the convergence of content
sharing, public communication, and interpersonal connection” [25:1]. 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 healthcare
community for patient education, peer support, and advocacy [26-28]. Social media platforms are
easy to access and participatory, thus they allow individuals and organizations to disseminate
information and rapidly engage large, globally-connected audiences [29]. Content shared on social
media platforms can provide unique opportunities to build community, share experiences, and
influence public health discourse [27]. Specific to endometriosis, social media has been used to
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increase advocacy, activism, and awareness of the condition [30]. Conversely, the nature of instant
access to information and a lack of fact-verifying measures can also lead to the unchecked and rapid
spread of mis- and disinformation to the public. Moreover, algorithms may incidentally lead to re-
traumatization and feelings of stigmatization [31-33]. Furthermore, considering people often
consume social media content in isolation, there is little way for content creators to recognize
potential (re)traumatization of viewers, highlighting the importance of creating and sharing content
in an intentional way to prevent content-based (re)traumatization from the outset.
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 [34], literature is emerging. We drew upon three frameworks
that highlighted the potential of these approaches to reduce harm when sharing health-adjacent
information digitally. First, Josephs et al. [35] emphasized three 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. [36], is 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 [36]. 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. [32] built upon the framework from Chen et al.
[36], adding specific aspects and examples to consider when applying trauma-informed approaches
to social media engagement. The framework from Scott et al. [32] outlined six guiding principles: (1)
safety (e.g., safe data collection and storage, relaxing colors); (2) trustworthiness and transparency
(e.g., transparent about what user data is collected and why); (3) peer support (e.g., protection for
those sharing their unique stories) ; (4) collaboration and mutuality (e.g., co-design with people with
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lived experience); (5) empowerment, voice, and choice (e.g., no real names); (6) cultural and
historical gender issues (e.g., acknowledge algorithmic biases).
Developing our Trauma-Informed Social Media Campaign
Theoretical Approaches
Throughout the development of the campaign’s design, content creation, data interpretation,
and dissemination strategies, we were primarily guided by principles of intersectional feminism and
integrated knowledge translation (IKT). An intersectional feminist perspective informed our
understanding of how overlapping identities such as race, gender, and country of origin shape
individuals’ healthcare experiences. IKT is a collaborative process that emphasizes partnership
between researchers and knowledge users throughout all stages of research [37]. IKT informed how
we identified priorities, designed methods, interpreted data, and shared results [37]. Unlike
traditional models that position researchers as the primary producers of knowledge, IKT recognizes
the expertise of both researchers and community partners, aiming to minimize power differentials
and promote equitable, contextually relevant knowledge creation [38].
With these guiding frameworks, the content that was shared during the social media
campaign was initially designed by H.D (quote posts), G.Y (image posts), and W.Z (videos/reels),
who drew upon findings from the EndoPhoto Study under the guidance of the content lead (H.N).
Before final approval, content, including images and associated captions, was reviewed and
discussed with the broader research team during bi-weekly team meetings and bi-monthly PRAB
meetings.
Campaign Goals
Our main goal for the social media campaign was to share key research findings from the
EndoPhoto Study, increase awareness of Asian women’s experiences living with endometriosis, and
direct viewers to our newly developed interactive EndoPhoto website [39]. The website showcases
images submitted by EndoPhoto Study participants alongside general endometriosis and pelvic pain
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health information and resources co-created by researchers, clinicians, and patient partners. Our
adaptation of the frameworks for a trauma-informed approach informed the formation of
partnerships, development of content, and moderation of digital spaces throughout the campaign. In
conducting the campaign, we aimed to foster a sense of validation, emotional safety, and support, for
both previous research participants and audiences, and minimize their risk of re-traumatization. The
campaign’s central message, your pain is real, you are believed, and you are not alone , matched the
overall messaging of content produced by our team and shared on the website. Additionally, this
message was consistently emphasized across all digital platforms.
Campaign Launch
We launched the campaign in March 2025 to coincide with Endometriosis Awareness Month.
The Endometriosis and Pelvic Pain Laboratory had a previously established Instagram profile
(@pelvicpainendo) with approximately 1000 followers before the campaign, and a Pinterest account
(@pelvicpainendo), which was created for this and future campaigns. These platforms aligned with
the campaign’s visual and trauma-informed goals, offering features such as content warnings and
comment moderation. Content shared was similar for both platforms but adapted in format to best
utilize each platform’s features. For example, Instagram’s reels, stories, and carousels supported a
balance of educational content and personal narratives, while Pinterest enabled thematic curation
through boards and infographics. Pinterest also has a different set of users and is more aligned with
artistic communities. Please note, we chose to share the images of content only from Instagram in
this manuscript due to easy viewability of the entire post from Instagram versus Pinterest. In total,
the campaign featured 41 posts between March 1st and March 31st across Instagram and Pinterest. All
the posts incorporated the widely recognised community hashtag #ThisIsEndo, supplemented by
topic-relevant hashtags. The team deliberately declined to create a new hashtag for the campaign,
given the objective of using social media as a mechanism to reach a wide audience of users rather
than share isolated content with limited reach.
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Considering Pinterest policies restrict the use of paid advertisements for new accounts, a soft
launch on the platform began on February 19th, 2025. Because of this, we published several posts
prior to the full campaign, which allowed us to generate early interest, establish baseline
engagement, and be considered an established account.
Early Challenges
Early in the campaign (March 3, 2025), our Instagram account was flagged by the Meta
algorithm into a category called ‘Health and Wellness.’ This category was designed by Meta to
reduce ‘negative’ advertising and monetization of organizations that were using advertising to sell
products and services. Although we were not advertising products, our placement in this category
limited what content could be promoted. Posts that included any features flagged as ‘negative’ by the
algorithm were prohibited from being advertised. Considering that endometriosis experiences often
involve challenges, our pre-planned content required significant changes in order to meet the
algorithm’s criteria. Figure 1 shows the original post that was flagged.
Figure 1. Original post on Instagram that was flagged by the algorithm as being ‘negative’.
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Incorporating Trauma-Informed Principles
Based on the previously mentioned frameworks, we adapted our campaign to focus on the
following principles of a trauma-informed approach: (1) support and collaboration; (2)
trustworthiness and transparency; (3) safety; (4) empowerment and voice; and (5) cultural and
gender sensitivity. In the following section, we discuss how we enacted these aspects. Please note,
although these aspects are presented as being separate ideas, many have overlapping and related
actions. Table 1 summarizes the approaches we took when developing this campaign.
Table 1. Our Approach to trauma-informed principles
Trauma informed
guiding principle
Our approach Considerations
Collaboration and
mutuality
Co-designed with PRAB members and
diverse interdisciplinary team of experts
Incorporated feedback throughout process
Shared content from lived experiences
Engaged with known influencers to
promote content
More time may be needed to include all team
members’ feedback and ideas, and thus
longer timeline to project completion
Trustworthiness and
transparency
Shared our research team positionality
statement
Created transparency around funding and
what this meant
Informed participants of purpose/content
when consenting to original study
Obtained explicit and ongoing consent
related to use of data
Viewers may have personal negative feelings
about funders
Additional human resources needed to gather
confirmatory consent from participants
Opt-out versus opt-in could incidentally
include photos that participants did not want
to share, but did not see the email
Safety Used gentle colors in content creation
Moderated comments
Included content warnings
Grouped images and shared select images
Engaged with specific platforms (Instagram
and Pinterest)
De-identified images
Participants may provide images that violate
design principles and gentle colors
Additional human resources required for
moderating comments
Not including all experiences captured as
many images were not selected
Not as wide reach due to including only
select friendly platforms
Temporary stories reduce reach
De-identifying images or using the photos
without the original captions may alter the
intended goal and impact of the image,
limiting participant creativity
Empowerment & voice Used friendly, non-stigmatizing, and
everyday language when captioning photos
Leveraged platforms to amplify voices
Potential for less reach when only using
select platforms and also reach to certain
groups (e.g., older people who more often
use Facebook) might be reduced;
demographics can vary across platforms
Participant caption not always included with
photograph, which could change intended
meaning
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Focus on ‘positive’ aspects due to algorithm
could represent a one-sided or skewed
representation of experiences
Sharing content that is ‘trauma-informed’
may incidentally portray the information and
experiences as being neutral or positive
Cultural and Gender
Sensitivity
Ensured sharing only ‘positive’ language
and experiences due to the Meta algorithm
Avoided stereotypes and stigmatization
Avoided hyper-gendered content
Excluding images that depicted too much
pain or had identifying information may
reduce the transparency of people’s
experiences
Some people might feel the non-hyper-
gendered colors and content do not relate to
them as much
1. Support and Collaboration
We defined support and collaboration as intentional actions taken to meaningfully engage
with those with lived experience and others in the community doing similar work. As such, PRAB
members defined campaign goals, reviewed and co-developed content, and ensured that materials
were safe, empowering, and contextually relevant. The PRAB involvement created an opportunity
for safety by foregrounding lived experience and ensuring that social media content reflected their
values and perspectives. The campaign was also managed by an external communications agency,
where the partner and social media specialist (S.L) was someone with lived experience of
endometriosis who simultaneously acted as a member of the PRAB.
We also took a collaborative approach to promoting the campaign, leveraging our known and
existing networks. This involved approaching familiar social media accounts, including science
communicators, non-profit organisations, news outlets, and independent influencers, and asking them
to share and promote our content. The campaign also partnered with advocacy organizations,
including The Endometriosis Network Canada, to broaden outreach and ensure alignment with
existing efforts in the endometriosis advocacy landscape.
2. Trustworthiness and Transparency
We considered trustworthiness and transparency aspects that involved disclosing who is
behind the campaign, our goals, funders and where the content came from, as well as being
transparent with the participants of the EndoPhoto Study about how we were using their data. (Figure
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2)
Figure 2. Instagram post explaining our research funders.
All participants in the EndoPhoto Study provided explicit informed consent to have their
photographs used in a social media campaign. We also provided participants with a lay summary of
the results via email that included an ‘action required’ message, showing participants the website
[39] where photographs had been included in a virtual gallery, and gave participants the ability to
withdraw their photographs and quotes at any point. We also strongly encouraged EndoPhoto Study
participants to review their photos to ensure they were comfortable with these being shared. No
participants opted out of their photos being shared.
3. Safety
When considering safety, we centered the principles of privacy and confidentiality from
Josephs et al. [35], and prioritized safety and preventing re-traumatization of participants of the
EndoPhoto Study whose images we shared. First, to maintain the emotional safety of those who
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participated in the research and shared their photos, we intentionally curated visual content in a way
that still honored participants’ lived experiences. We did this by choosing images that were not
intimately personal, or overtly medical in nature, or depicted individual people in moments of visible
distress. Instead, the campaign showcased strength-based visuals such as nature scenes, symbolic
objects, and comforting moments, like participants’ pets offering support (see Figures 3 and 4).
When possible, images were paired with participant-authored captions that emphasized resilience,
healing, and other personally meaningful themes to balance narrative authenticity with emotional
safety. We also intentionally blurred faces to protect identities, or selected images that further
supported anonymity, such as the use of a surgical mask (as seen in Figures 4 and 5).
Figure 3. Collage of nature and social support.
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Figure 4. Pets providing comfort.
Second, careful consideration was given to how participant photographs were shared. We
opted to present images as collages or grouped images rather than posting them individually
(example includes Figure 6). This approach was chosen to minimize the risk of certain photos
receiving disproportionately more ‘likes’ or ‘shares’ than others, which could cause distress among
some participants who noticed their photos were less ‘liked’.
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Figure 5. Examples of identity protection on Instagram.
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Figure 6. Shared collage of participant photos from an Instagram reel.
Third, based on recommendations from our social media specialist and patient partners,
Instagram and Pinterest were specifically chosen as platforms for this campaign, given they are well-
suited to image-based storytelling and, anecdotally, were considered less volatile during the dates of
the campaign, with lower rates of reproductive-health-online-harassment compared with other well-
known platforms. Fourth, elements of safety were further considered through active moderation of
comments to identify and remove hate speech, trolling, and unsolicited medical advice; however, we
did not find these were an issue in this campaign.
4. Empowerment and Voice
We considered empowerment and voice to focus on ensuring we were truthfully representing
participant experiences of the EndoPhoto Study , opting to share content that was more strengths-
based and showcased resilience and empowerment, while also sharing the reality of experiencing
endometriosis (Figure 7 and 8). In order to accomplish this, we used non-stigmatizing, everyday
language, and often incorporated participants’ own words in explaining the context of the photos
(Figure 9).
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Figure 7. Quote-based content on strength while living with endometriosis.
Figure 8. Quote based content on living with endometriosis.
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Figure 9. Everyday language in caption.
By integrating visual narratives with participant-authored captions, the campaign created
opportunities for individuals to reclaim agency in narrating their healthcare experiences, particularly
where medical and workplace systems had previously been invalidating. For example, o ne post
focused on how cultural taboos surrounding menstruation can lead to a lack of communication and
Discussion
of pain. This caption drew attention to the compounding effects of stress, isolation, and
reduced access to care (Figure 10). Together, we intended these posts to help humanize the lived
realities of people with endometriosis, while fostering empathy, reducing stigma, and encouraging
public dialogue.
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Figure 10. Content highlighting cultural taboos around menstruation.
5. Cultural and Gender Sensitivity
Striving for cultural and gender sensitivity, we carefully curated content to avoid
sensationalism, incidental stigmatization, stereotypes, clinical or diagnostic language, and potentially
distressing imagery. The campaign content aimed to disrupt the silence surrounding pelvic pain and
endometriosis, particularly the effects of medical dismissal, social isolation, and cultural stigma.
Considering the gendered nature of endometriosis—and although all the participants whose
photographs we shared identified as cisgender women—we intentionally avoided making the content
hyper-feminized or gendered towards women exclusively. We also aimed to avoid perpetuating
stereotypes and hyper-feminized content by choosing a colour palette that was both intentionally
calming, while not overly gendered (Figure 11).
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Figure 11. Avoidance of hyper-gendered or stigmatizing language or colours
Increasing Reach Through Advertisements
To increase the reach of the social media campaign, that is, the number of people who have
seen online content at least once, we paid for advertisements on both platforms with a total budget of
$3,000 CAD. For our paid advertisements, a detailed audience profile was developed to guide
content creation and ad targeting. The intended audience included individuals who either had a
confirmed or suspected endometriosis diagnosis, were assigned female at birth, of reproductive age
(inclusive of all gender identities, sexual orientations, and relationship statuses), with moderate
levels of health literacy, and understood English. High-frequency search terms related to pelvic pain
and endometriosis were identified to optimize advertisement discoverability (for example, pain,
symptoms, selfcare, journey, resilience, reflection).
Measuring Campaign Engagement
We used platform-integrated analytics (Instagram Insights and Pinterest Analytics) to monitor
primary performance indicators. For consolidated definitions of terms used to measure engagement
see Table 2. Metrics included reach, engagement ( likes, shares, comments, profile visits, and link
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clicks), and website page visits. 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 behaviour. Over the 31-day campaign, the website attracted
6,326 unique users. Instagram generated both the greatest volume of sessions and the longest dwell
time. Pinterest's shorter dwell times likely reflected the account’s infancy (new profile, first
campaign, algorithmic learning period). The high number of impressions was largely attributed to
three posts that ‘went viral’ during the campaign, meaning they received over 1 million views each
(Figure 12, 13, and 14). These posts reflected messages of support, resiliency, and healing. Ads 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 (for engagement measures, see Table 3).
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Figure 12. Still image from a reel that ‘went viral’ during the campaign.
Figure 13. Post that ‘went viral’ during the campaign.
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Figure 14. Still image taken from the second reel that ‘went viral’ during the campaign.
Table 2. Consolidated Definitions of Terms used to Describe Campaign Engagement
Term Definition
Reach Reach is defined as the number of unique users who have seen
online content at least once
Engagement Likes, shares, comments, profile visits, and link clicks
Impressions The total number of times the content was presented to potential
users on screen
V olume of sessions Number of visits to the website
Dwell Time How long people view the content for
Click through rates Percentage of people who click on a link to the website within your
content
Table 3. Engagement Results from Instagram and Pinterest
Platform Metric Value
Overall Total Social Impressions 8,540,528
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Instagram Engagement* 6.23%
Ad Impressions 7,941,457
Ads Reach 3,550,309
Pinterest Total Impressions 581,081
Total Engagement 5,528
*Please note, o n Instagram for ‘engagement’ anything above 6% is considered high engagement and on Pinterest
anything between 1% - 2% is considered average engagement [40, 41].
Discussion
and Lessons Learned
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
content creation. 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 quote-based content (opposed to
image-based content) produced the highest click-through rates on both platforms; announcement
posts (e.g., study overview) generated the greatest engagement; and Instagram ads, particularly quote
graphics, outperformed other creative formats. Although it is challenging to measure how the content
truly impacted viewers, some of these indicators may provide insight 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.
While trauma-informed principles are increasingly recognized in clinical and community
settings, their application to digital media, particularly social media, remains largely underexplored.
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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 Center for Intimacy Justice [42]
highlighted that a bias exists on major Meta platforms, where organizations experienced their content
and advertisements related to women’s sexual and reproductive health, including fertility and pelvic
health, being censored and over-moderated. 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 due to its ‘negative’ nature and association with healthcare. This flag necessitated a shift
toward resilience-focused and positively framed messaging only, which may have constrained the
full scope of participant narratives.
Strengths of the Campaign
One of the campaign's primary strengths was its collaborative, interdisciplinary approach.
The involvement of patient partners through the PRAB ensured content authenticity and emotional
safety. As well, working with a social media specialist was invaluable in navigating the landscape of
digital media. The campaign also benefited from sufficient funding, allowing strategic investment in
high-performing ad formats and continuous optimization based on analytics. Considering the
expertise of the team, content development led by those with lived, clinical, and research experience
added legitimacy, credibility, and multiple perspectives that countered misinformation in digital
health spaces. Importantly, the campaign filled a representational void by centering the narratives of
South, East, and Southeast Asian individuals with endometriosis, a demographic historically
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underrepresented in both research and advocacy.
Limitations
of the Campaign
Considering 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.
Key Takeaways
Trauma-informed principles can be adapted for digital health communication and effectively
applied in social media campaigns.
Posts that featured quotes, support networks (including pets), and announcements
consistently maximized engagement, suggesting these formats may be prioritized to ensure
engagement.
Early budget reallocation toward viral creative assets improved cost-efficiency.
Paid advertisements created opportunities for ensuring wider reach and may be helpful in
providing opportunities for content to be viewed by a larger audience.
Inclusive online storytelling that prioritizes participant voice and emotional safety resonates
with audiences and supports effective knowledge translation.
Algorithmic biases targeted toward women’s sexual and reproductive health may necessitate
creativity to avoid being flagged or framing messaging in ‘positive’ ways. This can ensure
wider reach but highlights gender bias within social media platforms.
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Acknowledgments: We would like to thank the participants of the EndoPhoto Study who shared
their stories and experiences with us. Also, we are grateful to have worked with Mass Velocity Media
to develop this social media campaign.
Funding: This work was funded by a 2024 Michael Smith Health Research BC Reach Award [RA-
2024-04266]
Authors contributions (CRediT):
KM: Funding acquisition, Methodology, Visualization, Supervising, Writing-Original draft, Writing-
Review and editing.
HD: Methodology, Visualization, Writing-Original draft, Writing-Review and editing.
AFH: Conceptualization, Funding acquisition, Methodology, Supervision, Writing-Review and
editing.
HN: Conceptualization, Data curation, Methodology, Investigation, Resources, Funding acquisition,
Project administration, Supervision, Visualization, Writing-Review and editing.
GY: Methodology, Visualization, Writing-Original draft, Writing-Review and editing.
WZ: Methodology, Visualization, Writing-Original draft, Writing-Review and editing.
JS: Funding acquisition, Methodology, Writing-Review and editing.
SL: Formal analysis, Investigation, Methodology, Writing-Review and editing.
AL: Funding acquisition, Methodology, Visualization, Writing-Review and editing.
PJY: Funding acquisition, Methodology, Writing-Review and editing.
NLO: Conceptualization, Methodology, Visualization, Writing-Original draft, Writing-Review and
editing, Project administration, Supervision, Funding acquisition.
Conflicts of interest: No major conflicts of interest; however, SL acted as a patient partner and a
paid consultant from Mass Velocity Media who contributed to the development and strategies of the
social media campaign.
Data availability: Data sharing is not applicable to this article as no data sets were generated or
analyzed during this study.
Abbreviations:
IKT: Integrated Knowledge Translation
PRAB: Patient Research Advisory Board
SAMHSA: Substance Abuse and Mental Health Services Administration’s framework
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Supplementary Files
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Figures
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Original post on Instagram that was flagged by the algorithm as being ‘negative’.
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Instagram post explaining our research funders.
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Collage of nature and social support.
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Pets providing comfort.
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Examples of identity protection on Instagram.
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Shared collage of participant photos from an Instagram reel.
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Quote-based content on strength while living with endometriosis.
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Quote based content on living with endometriosis.
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Everyday language use in caption.
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Content highlighting cultural taboos around menstruation.
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Avoidance of hyper-gendered or stigmatizing language or colours.
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Still image from a reel that ‘went viral’ during the campaign.
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Post that ‘went viral’ during the campaign.
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Still image taken from the second reel that ‘went viral’ during the campaign.
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