JMIR Publications

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.