title: Barriers to seeking care for accidental bowel leakage: a qualitative study.
abstract: OBJECTIVE
  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.
authors.affiliation: Wisconsin Multidisciplinary K12 Urologic Research Career Development Program Scholar, University of Wisconsin-Madison School of Medicine and Public Health, 600 Highland Avenue, Box 6188, Madison, WI, 53792, USA. Hwbrown2@wisc.edu.
authors.forename: Heidi Wendell
authors.initials: HW
authors.lastname: Brown
authors.affiliation: University of New Mexico Health Sciences Center, Albuquerque, NM, USA.
authors.forename: Rebecca G
authors.initials: RG
authors.lastname: Rogers
authors.affiliation: University of Wisconsin-Madison School of Pharmacy, Madison, WI, USA.
authors.forename: Meg E
authors.initials: ME
authors.lastname: Wise
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D005242:Fecal Incontinence / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D008875:Middle Aged; D010342:Patient Acceptance of Health Care
keywords: Accidental bowel leakage; Barriers; Care-seeking; Fecal incontinence; Help-seeking; Patient perspective