Importance: Urinary incontinence (UI) has a profound effect on aging patients, society, and the health care system. Older women's lived experiences with UI are not well described and may not be fully captured by current quality-of-life measures.
Objectives: Our primary objective was to understand the impact of UI in women aged 70 years and older.
Study design: This was a qualitative study nested within a randomized controlled trial of OnabotulinumtoxinA 50 versus 100 units. Women were intentionally sampled before treatment based on age, race/ethnicity, and primary language (Spanish or English) for pretreatment interviews, which explored patients' experiences living with UI. Transcripts were coded using a mixed inductive and deductive approach using thematic analysis.
Results: Twenty-two women, aged 70-87 years, participated. In all, 73% identified as non-Hispanic White, 9% as Black and 18% as Hispanic.The analysis revealed 3 main themes: (1) burden: UI is profoundly impactful and distressing; for many older women, in our study, UI is the biggest controlling factor in their lives; (2) Coping strategies: most women reported restricting their activities due to UI, while self-identifying as independent and positive. Strategies also included significant hygiene rituals and protection of clothing, furniture, car seats, etc; (3) Loss: UI causes worry, fear, humiliation, and shame, and for many led to "choosing" isolation and reducing activities.
Conclusion: UI causes a constant and profound burden and loss that affects emotional, physical, and relational domains of life. However, older women resiliently seek ways to overcome the havoc UI creates across all areas of life.
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