Abstract
INTRODUCTION AND HYPOTHESIS: Fewer than 50 % of women with urinary incontinence (UI) and 30 % of women with accidental bowel leakage (ABL) seek care. We sought to describe barriers to care seeking for ABL to inform development of an instrument to measure these barriers. METHODS: We recruited women with ABL with varied prior care-seeking experiences to participate in focus groups and cognitive interviews so we could understand factors that may have prevented or delayed care seeking. Focus groups continued until thematic saturation was reached using conventional content analysis. Final themes were established and characterized by comparing within and across the focus groups and with previously described UI and ABL care-seeking barriers. Cognitive interviews were confirmatory. RESULTS: Thirty-nine women (aged 46-85) participated in six focus groups and ten cognitive interviews; 89 % were white, 8 % African American, and 3 % Latina. We identified 12 barriers to seeking care for ABL: (1) Lack of knowledge about the condition; (2) Lack of knowledge about treatment; (3) Fear of testing/treatment; (4) Normative thinking; (5) Avoidance/denial; (6) Life impact; (7) Embarrassment/shame; (8) Self-blame; (9) Stigma; (10) Isolation; (11) Provider barriers; (12) Access limitations. These 12 barriers encompassed three overarching themes: the internalized self in relation to ABL; perceptions about ABL and its treatments; and interaction with the healthcare system. CONCLUSIONS: ABL care-seeking barriers are similar to those described for UI, with the notable addition of lack of knowledge that ABL is a medical condition experienced by others. Interventions to promote access to effective treatments for ABL should include information about prevalence and treatability.