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OBJECTIVE: To evaluate whether endometriosis and menstrual health education improves knowledge and attitudes among adolescents and is acceptable. METHODS: We conducted a cluster randomized controlled trial in a Canadian school district. Eligible classes were Grade 8-12, co-educational, and English. Classes were randomly assigned either to a 60-minute virtual menstrual health and endometriosis education program before (intervention) or after (waitlist control) primary data collection. The primary outcome was change in endometriosis knowledge from baseline to follow-up (â¼4 weeks later, 6-item questionnaire). Secondary outcomes were changes in confidence in endometriosis knowledge, prioritization of menstrual health knowledge, and comfort discussing menstrual health, as well as intervention acceptability. The sexual health educator and statistician were masked. RESULTS: In April and May 2021, two intervention classes and two control classes completed the study. 71 students enrolled, and 48 were present on both baseline and follow-up days. Mean age was 15.7 ± 1.6 years, 55% identified as non-White ethnicities, and 53% female. The knowledge score increased by 32% in the intervention classes compared with 2% in the control classes, with an estimated mean difference of 1.56 (95% CI 1.12-2.00). The intervention classes showed increased confidence in endometriosis knowledge, prioritization of menstrual health knowledge, and comfort discussing menstrual health, compared to the control classes. The mean acceptability index was 80 (SD = 10) in the intervention classes and 70 (SD = 20) in the control classes. CONCLUSION: A brief menstrual health and endometriosis education program improved knowledge and attitudes among adolescents, who considered the program acceptable.
RESUMEN
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.
