Seo Hyunjin, Burkett K Macy, Okocha Moses, Ha Huong, Chaif Rim, Izhar Nazra, Coelho Michaella Barros, Jona Blessing, Iqbal Azhar
William Allen White School of Journalism and Mass Communications, University of Kansas, Lawrence, KS, USA.
Grady College of Mass Communication & Journalism, University of Georgia, Athens, GA, USA.
Digit Health. 2025 Jan 21;11:20552076251314905. doi: 10.1177/20552076251314905. eCollection 2025 Jan-Dec.
While endometriosis is estimated to affect 1 in 10 women globally, awareness of the disease as well as research and funding to fight the disease remains lacking as compared with other chronic diseases. This study examines how social media users utilized Instagram to raise awareness of and mobilize activism around endometriosis by analyzing prominent topics, word associations, and feminism themes in endometriosis-tagged posts on Instagram.
We used a mixed-method approach of combining computational analyses (topic modeling and word association) and human coding (qualitative thematic analysis) of Instagram posts on endometriosis.
Our results show that while Instagram users discussed a variety of issues related to the disease on the social media platform, these issues tend to focus on four topic areas: (i) living with endometriosis, (ii) pregnancy and endometriosis, (iii) awareness and empowerment, and (iv) women's health and wellbeing. In addition, social media users widely incorporated three feminism themes: (i) bringing attention to invisible disability, (ii) solidarity and support among women, and (iii) advocacy and activism around women's health.
People with endometriosis use Instagram to create an online public sphere for raising awareness of the disease, offering networking and support to other endometriosis patients, and creating a movement for enhancing women's health and wellness. In doing so, they are also addressing sexism and misconceptions about endometriosis that have traditionally contributed to normalizing women's experience of pain associated with endometriosis and consequently delaying endometriosis diagnoses.
虽然据估计全球每10名女性中就有1人受子宫内膜异位症影响，但与其他慢性病相比，对该疾病的认识以及对抗该疾病的研究和资金投入仍然不足。本研究通过分析Instagram上带有子宫内膜异位症标签的帖子中的突出主题、词汇关联和女权主义主题，考察社交媒体用户如何利用Instagram提高对子宫内膜异位症的认识并动员围绕该疾病的行动主义。
我们采用了一种混合方法，将对Instagram上关于子宫内膜异位症的帖子的计算分析（主题建模和词汇关联）与人工编码（定性主题分析）相结合。
我们的结果表明，虽然Instagram用户在社交媒体平台上讨论了与该疾病相关的各种问题，但这些问题往往集中在四个主题领域：（i）患有子宫内膜异位症的生活，（ii）怀孕与子宫内膜异位症，（iii）认识与赋权，以及（iv）女性健康与福祉。此外，社交媒体用户广泛融入了三个女权主义主题：（i）关注隐形残疾，（ii）女性之间的团结与支持，以及（iii）围绕女性健康的倡导与行动主义。
患有子宫内膜异位症的人利用Instagram创建了一个在线公共领域，以提高对该疾病的认识，为其他子宫内膜异位症患者提供网络和支持，并发起一场增强女性健康的运动。通过这样做，他们也在解决传统上导致女性与子宫内膜异位症相关疼痛经历正常化从而延迟子宫内膜异位症诊断的性别歧视和对子宫内膜异位症的误解。
