How women conceptualize urinary incontinence: a cultural model

Abstract

Aims: Urinary incontinence (UI) is common among women in the United States and worldwide. Although the biomedical model for female UI has been thoroughly examined, the cultural model women living with UI ascribe to has been less well described. The purpose of this study was to elicit salient features of a cultural model for long-term (>5 years) female UI and, in so doing, increase understanding of the conceptualization of female UI from an emic (patient-derived) perspective. Cultural models theory provided the overall framework for the study.

Methods: Freelist (n = 25) and pilesort (n = 13) exercises were completed by community-dwelling women with long-term UI. In the freelist exercise, participants listed 81 unique terms in response to the request: Please list all the terms you think of when you hear the phrase urinary incontinence. The most salient terms included: wet, embarrassed, diapers/pads, leakage, old age, urinate, annoyance, inconvenience. We then used the most culturally salient items from the freelist in three pilesort tasks.

Results: Results of the pilesort exercises suggest that some aspects of the cultural model are shared, whereas others are highly heterogeneous.

Conclusions: A small core of salient emic terms reflects a shared cultural understanding of female UI. The cultural model includes emotional and physical elements. These findings are important in reframing and reexamining our understanding of female UI. Next steps include testing the cultural model by including salient terms used by women living with long-term UI in focus groups and clinical encounters.