PDF(Pubmed)
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.
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.
摘要：
背景：子宫内膜异位症是一种以疼痛为特征的复杂慢性疾病，包括痛苦的性爱,可以促进相当大的性功能，自尊,和关系挑战。数字讲故事是以艺术为基础的，参与式方法，个人创造和分享他们的疾病经历，详细介绍他们的生活经历。
目的：本研究的目的是对一个以子宫内膜异位症为重点的网络数字讲故事研讨会进行试点测试，以了解讲述者参与研讨会的经验。我们评估了故事共同创造和分享的可行性，包括研讨会参与的情感影响，研讨会对主题的可接受性，以及讲故事的人愿意与更广泛的受众分享他们的故事，作为知识翻译的一种方法。
方法：本研究采用以社区为基础的参与式方法，辅以以患者为导向的研究和综合知识翻译。研究参与者，被称为讲故事的人，在数字故事中心的推动下，在基于网络的研讨会（包括5个2小时的会议，为期6周）期间，共同创建了3到5分钟的个人数字故事，讲述他们对子宫内膜异位症的生活经历。数据是通过参与者在研讨会上的观察收集的，讲故事的人每周反思期刊，以及对讲故事者的研讨会结束焦点小组采访。使用定性解释描述方法对这些数据进行了分析。
结果：共有5名19至39岁的女性和1名非二元讲故事者经历了4至22年的子宫内膜异位症参与了这项研究。我们通过描述参与者的机会体验来表征故事研讨会的参与和故事共同创作的可接受性，承诺,和联系；正在愈合的复杂情绪；以及分享的愿望。通过100%参与研讨会证明了可行性。所有6位讲故事的人都报告说，通过社交媒体和性别公开分享他们共同创作的数字故事，疼痛和子宫内膜异位症网站。
结论：尽管故事构建过程很复杂，研讨会以及数字故事的共同创造和分享是可行的。讲故事的人发现，这个过程通过提供一种独特的方式来谈论痛苦的性行为，从而允许情感康复和个人赋权，这也促进了研讨会人员之间的联系。使用数字讲故事作为知识翻译工具显示出希望，这种方法也有作为治疗干预的潜力。
目的：本研究的目的是对一个以子宫内膜异位症为重点的网络数字讲故事研讨会进行试点测试，以了解讲述者参与研讨会的经验。我们评估了故事共同创造和分享的可行性，包括研讨会参与的情感影响，研讨会对主题的可接受性，以及讲故事的人愿意与更广泛的受众分享他们的故事，作为知识翻译的一种方法。
方法：本研究采用以社区为基础的参与式方法，辅以以患者为导向的研究和综合知识翻译。研究参与者，被称为讲故事的人，在数字故事中心的推动下，在基于网络的研讨会（包括5个2小时的会议，为期6周）期间，共同创建了3到5分钟的个人数字故事，讲述他们对子宫内膜异位症的生活经历。数据是通过参与者在研讨会上的观察收集的，讲故事的人每周反思期刊，以及对讲故事者的研讨会结束焦点小组采访。使用定性解释描述方法对这些数据进行了分析。
结果：共有5名19至39岁的女性和1名非二元讲故事者经历了4至22年的子宫内膜异位症参与了这项研究。我们通过描述参与者的机会体验来表征故事研讨会的参与和故事共同创作的可接受性，承诺,和联系；正在愈合的复杂情绪；以及分享的愿望。通过100%参与研讨会证明了可行性。所有6位讲故事的人都报告说，通过社交媒体和性别公开分享他们共同创作的数字故事，疼痛和子宫内膜异位症网站。
结论：尽管故事构建过程很复杂，研讨会以及数字故事的共同创造和分享是可行的。讲故事的人发现，这个过程通过提供一种独特的方式来谈论痛苦的性行为，从而允许情感康复和个人赋权，这也促进了研讨会人员之间的联系。使用数字讲故事作为知识翻译工具显示出希望，这种方法也有作为治疗干预的潜力。
