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I leaked, then I Reddit: experiences and insight shared on urinary incontinence by Reddit users

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Abstract

Introduction and hypothesis

Urinary incontinence (UI) is a highly prevalent condition, but is often not discussed owing to social stigma. Reddit is an internet platform for anonymous information sharing, expression, and discussion. We sought to qualitatively analyze people’s behavioral, psychological, and illness experiences with UI expressed on Reddit to improve our understanding of patients’ perceptions and ultimately the care we provide.

Methods

We used the Subreddit group “Incontinence” over 5 years and “BeyondtheBump” (postpartum forum) over 1 year as transcripts for qualitative analysis. Two independent researchers read and coded relevant threads (>100 posts and >400 comments). Charmaz’s principles of grounded theory were applied. This included line-by-line coding of transcripts utilizing key phrases followed by grouping similarly coded phrases into preliminary themes. Emergent concepts were derived from these themes.

Results

A group of Reddit users with diverse UI etiologies were sampled. Qualitative analysis resulted in six preliminary themes. Users with UI were initially self-aware of their incontinence. They were interested in optimal product use. Users struggled with major life adjustments and relating to others. Nonetheless, they learned gradually to cope with their symptoms. Last, postpartum women specifically wanted additional immediate help for managing UI, often in the form of pelvic physiotherapy. Three emergent concepts were formed: the sense of isolation, acceptance over time, and self-drive to manage their UI.

Conclusions

Internet forums such as Reddit may serve as a health resource for people with UI. Physicians can strive to better understand the patient perspective and their needs in order to provide optimal care.

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Abbreviations

FPMRS:

Female Pelvic Medicine and Reconstructive Surgery

UI:

Urinary incontinence

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Acknowledgements

We thank Virginia M. Green, PhD for her assistance with the manuscript.

Author information

C. Du: protocol/project development, data collection and analysis, manuscript writing and editing; W. Lee: protocol/project development, data collection and analysis, manuscript writing and editing; D. Moskowitz: protocol/project development, manuscript writing and editing; A. Lucioni: manuscript writing and editing; K.C. Kobashi: protocol/project development, manuscript writing and editing; U.J. Lee: protocol/project development, data collection and analysis, manuscript writing and editing.

Correspondence to Una J. Lee.

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Du, C., Lee, W., Moskowitz, D. et al. I leaked, then I Reddit: experiences and insight shared on urinary incontinence by Reddit users. Int Urogynecol J 31, 243–248 (2020). https://doi.org/10.1007/s00192-019-04165-8

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Keywords

  • Urinary incontinence
  • Grounded theory
  • Patient participation
  • Qualitative analysis