Gonzalez, G., Vaculik, K., Khalil C., Zektser, Y., Arnold, C., Almario, C.V., Spiegel, B.M. and Anger, J.T., 2021. Using Digital Ethnography to Understand the Experience of Women With Pelvic Organ Prolapse. Female Pelvic Medicine & Reconstructive Surgery, 27(2), pp.e363-e367




Objective: To characterize the decision-making process and illness experience of women with pelvic organ prolapse (POP) using large-scale social media analysis.

Methods: Digital ethnographic analysis of online posts identified through data mining was performed. Grounded theory methodology was applied to 200 posts via traditional hand coding. To supplement our qualitative approach, we applied a Latent Dirichlet Allocation probabilistic topic modeling process to review the entire data set of identified posts to ensure thematic saturation.

Results: There were 3451 posts by 2088 unique users from 117 websites worldwide that were identified via social media data mining. We found that the anonymity of online forums allowed for information and support exchange among women with POP. Our analysis revealed that the exchange of online information aids in the decision-making process and, in some instances, appears to be the primary source of information. There was confusion about the anatomical and surgical complexities of prolapse. Our study also identified misconceptions, perceived risk factors, prevention methods, and management recommendations that were discussed online.

Conclusions: This large-scale online community-based analysis demonstrated the utility of social media to better understand women’s experiences with POP. Thematic findings highlighted essential concerns and challenges involved in the surgical decision-making process and the understating of the anatomical complexity of sector defects, specifically to cystocele, rectocele, State specific defects.


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