ArticleJMIR formative research2023
Web-Based Digital Storytelling for Endometriosis and Pain: Qualitative Pilot Study.
Article in JMIR formative research, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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The trial behind it
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 11 citations in OpenAlex.
- The health-promoting experiences of storytellers in group-based digital storytelling workshops: a meta-synthesis of qualitative studies.Frontiers in digital health · 2025Pooled it
- Web-Based Group Photovoice Through the Lens of Survivors of Critical Illness Recovery: Photovoice Qualitative Pilot Study.JMIR formative research · 2026Article
- Digital health technologies in pain management for patients with endometriosis: A scoping review.PloS one · 2026Article
- Exploring endometriosis community needs to co-create the EndoZone digital health platform: a qualitative research study.BMC women's health · 2025Article
- Digital Social Stories for Teaching Earthquake Safety Skills to Individuals With Autism Spectrum Disorder.Journal of autism and developmental disorders · 2025Article
- Co-creation of a qualitative fertility research study to understand waiting time experiences through patient engagement.Research involvement and engagement · 2024Article
- The use of Arts-Based Research in Chronic Pain: A Scoping Review.Canadian journal of pain = Revue canadienne de la douleur · 2024Article
- My Kidney T.R.E.K. - Thinking, Reflecting, and Empowering Kidney Transplant Patients, through technology.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2024Article
Corrections and comments
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Authors and funding
14 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEndometriosis 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.
objectiveThe 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.
methodsThis 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.
resultsA 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.
conclusionsDespite 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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