Developing a Trauma-Informed Social Media Campaign to Disseminate Endometriosis-Specific Qualitative Art-Based Research Findings: Tutorial

Trauma-informed approaches can promote the creation of systems that prioritize safety and empowerment to improve patient well-being. These approaches are especially important in sexual and reproductive health care, 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 the 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 paper, we describe how we adapted and applied trauma-informed approaches to the development and implementation of the social media campaign. To do this, we followed five adapted trauma-informed principles: (1) support and collaboration, (2) trustworthiness and transparency, (3) safety, (4) empowerment and voice, and (5) cultural and gender sensitivity, and four steps: (1) frame the campaign, (2) create content and manage the campaign, (3) measure campaign impact, and (4) conduct postcampaign reflections. We co-designed this campaign with patient partners having lived experience of endometriosis to facilitate support and collaboration. Additionally, we shared details about the funders of this study to increase trust and transparency, moderated comments and deidentified images to promote participant safety, chose safer platforms to enhance empowerment and voice, avoided stereotypes, and shared authentic experiences of Asian women 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 engagement rates of 6.23% and 1.4% on Instagram and Pinterest, respectively.

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Publication Details

Journal
Journal of Medical Internet Research
Published
2025-12-23
DOI
https://doi.org/10.2196/83491
Primary Topic
Endometriosis Research and Treatment
Type
article
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article

Developing a Trauma-Informed Social Media Campaign to Disseminate Endometriosis-Specific Qualitative Art-Based Research Findings: Tutorial

Heather Noga, Sarah Lett, Jessica Sutherland, Natasha L. Orr et al.
Journal of Medical Internet Research
Endometriosis Research and Treatment
article

Developing a Trauma-Informed Social Media Campaign to Disseminate Endometriosis-Specific Qualitative Art-Based Research Findings: Tutorial

Heather Noga, Sarah Lett, Jessica Sutherland, Natasha L. Orr, Kerry Marshall, Hargun Dhillon, A. Fuchsia Howard, William Zhu, Grace J Yang, Anna Leonova, Paul Yong
article en

Abstract

Trauma-informed approaches can promote the creation of systems that prioritize safety and empowerment to improve patient well-being. These approaches are especially important in sexual and reproductive health care, 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 the 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 paper, we describe how we adapted and applied trauma-informed approaches to the development and implementation of the social media campaign. To do this, we followed five adapted trauma-informed principles: (1) support and collaboration, (2) trustworthiness and transparency, (3) safety, (4) empowerment and voice, and (5) cultural and gender sensitivity, and four steps: (1) frame the campaign, (2) create content and manage the campaign, (3) measure campaign impact, and (4) conduct postcampaign reflections. We co-designed this campaign with patient partners having lived experience of endometriosis to facilitate support and collaboration. Additionally, we shared details about the funders of this study to increase trust and transparency, moderated comments and deidentified images to promote participant safety, chose safer platforms to enhance empowerment and voice, avoided stereotypes, and shared authentic experiences of Asian women 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 engagement rates of 6.23% and 1.4% on Instagram and Pinterest, respectively.

Journal of Medical Internet ResearchVol. 28
University of British Columbia (CA), Endometriosis UK (GB), Women's Health Research Institute (CA), B.C. Women's Hospital & Health Centre (CA)
Gender equality
Openalex Percentile: Top 28%
Endometriosis Research and Treatment
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