Web-Based Digital Storytelling for Endometriosis and Pain: Qualitative Pilot Study (Preprint)

A. Fuchsia Howard, Heather Noga, Gurkiran Parmar, Lan Kennedy, Sarah Aragones, Roop Bassra, Lauren Gelfer, Edurne Lopez de Arbina, Jessica Sutherland, Catherine Allaire, John L. Oliffe, Leanne M. Currie, Holly Yager, Paul J. Yong
2022 · doi:10.2196/preprints.37549 · W4324272638
preprint OA: gold CC0
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⚙ AI-generated summary by claude@2026-07, 2026-07-09 ⓘ

This qualitative pilot study found that a web-based digital storytelling workshop was feasible and acceptable for participants with endometriosis, allowing for emotional healing and empowerment through story co-creation and sharing.

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⚙ AI-generated deep summary by claude@2026-07, 2026-07-09 · read from full text ⓘ

This paper piloted an online, community-based digital storytelling workshop for people with endometriosis to evaluate participants’ experiences with story co-creation and sharing, using a qualitative Interpretive Description approach. Six storytellers (five women and one non-binary person, ages 19–39, with 4–22 years of endometriosis) co-created 3–5 minute digital stories over five 2-hour sessions across six weeks, with data collected via participant observations, weekly reflective journals, and an end-of-workshop focus group. Findings characterized workshop participation as involving opportunity, commitment, connection, emotional healing/empowerment, and a desire to share, and all participants reported feeling empowered by publicly sharing their stories on social media and the Sex, Pain & Endometriosis website, though the small pilot sample and limited study design constrain generalizability. This paper is centrally about endometriosis — it reports a feasibility/pilot test of an online digital storytelling workshop focused on endometriosis-related pain, including painful sex and empowerment through shared narratives.

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Abstract

BACKGROUND Endometriosis is a complex chronic disease characterized by pain, including painful sex, that can contribute to considerable sexual function, self-esteem, and relationship challenges. Digital storytelling is an arts-based, participatory methodology wherein individuals create and share their illness experiences in detailing their lived experiences. OBJECTIVE The study objective was to pilot-test a web-based digital storytelling workshop focused on endometriosis to understand storytellers’ experiences of workshop participation. We assessed the feasibility of story cocreation and sharing, including the emotional impact of workshop participation, the acceptability of the workshop for the subject matter, and the storytellers’ willingness to share their stories with broader audiences as a method for knowledge translation. METHODS This study used a community-based participatory methodology supplemented with patient-oriented research and integrated knowledge translation. Study participants, referred to as storytellers, cocreated 3- to 5-minute individual digital stories about their lived experiences of endometriosis during a web-based workshop (comprising five 2-hour sessions over 6 weeks) facilitated by The Center for Digital Storytelling. Data were collected through participant observations at the workshop, storyteller weekly reflective journals, and an end-of-workshop focus group interview with storytellers. These data were analyzed using a qualitative interpretive description approach. RESULTS A total of 5 women and 1 nonbinary storyteller aged 19 to 39 years who had experienced endometriosis for 4 to 22 years participated in the study. We characterized storytelling workshop participation and the acceptability of story cocreation by describing participants’ experiences of opportunity, commitment, and connection; complex emotions that were healing; and a desire to share. Feasibility was demonstrated through 100% engagement in the workshops. All 6 storytellers reported feeling empowered by publicly sharing their cocreated digital stories through social media and the Sex, Pain & Endometriosis website. CONCLUSIONS Despite the complexities of the story-building process, the workshop and the cocreation and sharing of digital stories were feasible. The storytellers found that this process allowed for emotional healing and personal empowerment by offering a unique way to talk about painful sex, which also facilitated a connection among those in the workshop. The use of digital storytelling as a knowledge translation tool shows promise, and this approach also has potential as a therapeutic intervention.
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Abstract

Background: Endometriosis is a complex chronic disease characterized by pain, including painful sex, which can contribute to significant sexual function, self-esteem, and relationship challenges. Digital storytelling is an arts-based, participatory methodology wherein individuals create and share their illness experiences in detailing their lived experiences.

Objective

The study objective was to pilot-test an online digital storytelling workshop focused on endometriosis to understand storytellers’ experiences of workshop participation. We assessed the feasibility of story co-creation and sharing, including 1) the emotional impact of workshop participation, 2) the acceptability of the workshop for the subject matter, and 3) the storytellers’ willingness to share their stories with broader audiences as a method for knowledge translation.

Methods

This study employed community-based participatory methodology supplemented with patient-oriented research and integrated knowledge translation. Study participants, referred to as storytellers, co-created 3 to 5 minute individual digital stories about their lived experiences of endometriosis during an online workshop (comprising five 2-hour sessions over six weeks) facilitated by The Center for Digital Storytelling. Data were collected through participant observations at the workshop, storyteller weekly reflective journals, and an end-of-workshop focus group interview with storytellers. These data were analyzed using a qualitative Interpretive Description approach.

Results

Five women and one non-binary storytellers, 19 to 39 years of age who had experienced endometriosis for 4 to 22 years participated. We characterized storytelling workshop participation and the acceptability and feasibility of story co-creation by describing participants’ experiences of: 1) opportunity, commitment, and connection, 2) healing and empowering complex emotions, and 3) a desire to share. All six storytellers reported feeling empowered by publicly sharing their co-created digital stories through social media and the Sex, Pain & Endometriosis website.

Conclusions

Despite the complexities of the story-building process, the workshop and the co-creation and sharing of digital stories were feasible. The storytellers found this process allowed for emotional healing and personal empowerment by offering a unique way to talk about painful sex, which also facilitated a connection between those in the workshop. The use of digital storytelling as a knowledge translation tool shows promise, and this approach also has potential as a therapeutic intervention. Citation Request queued. Please wait while the file is being generated. It may take some time. Copyright © The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.

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endometriosis

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Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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