Barriers to care-seeking for accidental bowel leakage
Objectives: To 1) Identify barriers to seeking care for accidental bowel leakage (ABL); and 2) Compare with urinary incontinence (UI) care-seeking barriers.
Methods: We conducted six focus groups (FGs) with women with ABL about their barriers to seeking care. Two researchers conducted thematic analysis independently and then discussed to reach consensus. Analyses informed revisions to the script between FGs 1-2-3-4 to reflect women’s lived experience. Final themes were established and characterized by constantly comparing within and across the FGs, and with previously identified UI care-seeking barriers (1). Saturation was reached after FG 4; FGs 5-6 were confirmatory.
Results: Twenty-nine women participated in six FGs. Ages ranged from 46-85 (75% were >60); 86% were White, 10% African-American, and 4% Latina. We identified twelve barriers to seeking care for ABL. Barriers 1-8 were identical to previously identified UI care-seeking barriers: 1) fear of treatment; 2) lack of knowledge about treatment; 3) communication issues; 4) provider barriers; 5) avoidance/denial; 6) normative thinking; 7) other priority health issues; and 8) limitations to access (1). Four interrelated barriers, 9-12, were unique to ABL. 9) Isolation was expressed as being alone and not having role models, and was related to 10) Stigma, expressed generally as shame and guilt. Stigma specific to bowel leakage was described as “smelly” and “dirty,” leading to keeping ABL a secret, and was also related to 11) Self-blame, or “There’s something I did that made it happen...” including socially stigmatizing events, “Probably this is because I had anal sex…Oh my gosh, it was just two times in my whole life,” or “I was raped as a child, and I figured that’s what it was from.” Isolation, stigma and self-blame were all associated with 12) Not knowing that ABL is a common, treatable condition: “I didn’t really know that it was a condition that I should go to the doctor about,” or “How would you know whether you have it if it doesn’t have a name? How can you talk about something you don’t even know what it is?”
Conclusions: ABL care-seeking barriers include and expand upon those identified for UI. Notable differences between UI and ABL include isolation, ABL-specific stigma, self-blame, and not knowing about the prevalence, causes and treatments for ABL. Based on these findings, we suggest that public health campaigns and providers target ABL-specific barriers to care-seeking to promote awareness of the prevalence, causes, and treatments for ABL.
References: 1. Int Urogynecol J 2014;25(S1):S195-196.